History

Tuesday, April 2, 2013 8:15 PM CDT

Three weeks ago (on Monday evening), at approximately the same time I began writing this, we got the heartbreaking news that Benji would not be able to have a liver transplant. Because of not getting a liver soon enough, his other organs had become so badly damaged that not only could he not have a transplant, we were also told he might only have another 2 to 3 more days to live. We had run out of time. While we had been concerned that Benji was running out of time, we still had hope that he would be able to hang on till he got that liver. He had been vented earlier that day, which, both the doctors and we, were hopeful would buy him some time, and we’d just found out that afternoon that the previous Friday he’d been upgraded to a status 1B. (That upgrade signified that the surgeons felt he didn’t have much time left, but it also tremendously increased his chances of getting a liver quickly). However, after speaking with the doctors that evening, we knew that unless God performed an incredible miracle very quickly, we were at the end of the line. We had known all along that his condition could change at any moment, disqualifying him for transplant; however, it hadn’t occurred to us that his death could happen so suddenly.

At the time we were given this devastating news, one of my first questions was if he would be able to be taken off the vent so we could all say our goodbyes. The doctors told us that was their hope, but they didn’t know. At that time, I was picturing Benji waking up (as he had in the past), but because he was vented he’d be unable to talk. I wanted him to have the ability to speak to us if he wanted to, not just us to him. Benji never woke up and later, after the boys were all there, we discussed whether or not we should have them attempt to rouse Benji or keep him sedated so he didn’t have to consciously deal with the realization that he was going to die. At that time, we all decided that while WE would like the opportunity to speak to him one last time and tell him goodbye, for his sake, we should probably not attempt to wake him. Looking back, I am soooo grateful he never woke up- not just for his sake, but for ours as well. The thought of having had to tell him the devastating news that he was not going to receive the liver in time, as well as having to look in his eyes and tell him goodbye and that he most likely only had a couple days left on this earth, is an excruciatingly painful thought! I think it would have ripped all of our hearts out. (As I was writing this, it occurred to me that based on Benji’s responses in the past, if we would have had to tell him, I’m sure he would have shed some tears but I expect his demeanor would have remained calm and peaceful. We all may have had a much harder time with it than he would have. Of course, we’ll never know the answer to that.)

Another thing I think about regarding those final hours with Benji and the decision we made whether or not to wake him, were his extremely high (and climbing) ammonia levels. The one reason I was uneasy about not trying to wake him was because of the chance he could hear and understand everything we were saying and though wanting badly to respond, couldn’t. Again however, because of the ammonia levels (the last result was 415), there’s a very good chance he was entirely unable to hear us, and even if he was able to hear, he probably wouldn’t have been able to make sense of anything we said. There is also a good chance that if he had woken up he would have been so disoriented he wouldn’t even have recognized us. I’m glad that is not my memory of our last waking moments with Benji and I do take comfort in the fact that chances are great he was able to slip peacefully away, without ever having to deal with the idea that he was going to die. We are grateful that though God chose to take Benji, he allowed him to slip away quickly and peacefully, and that we were all spared some of the agony we might have gone through.

Since Benji’s death, we’ve been asked (not in an accusatory way, but because it is a common response from people in our situation) if we struggle with questions regarding whether or not we had done everything we could for Benji. Gratefully, both Allen and I can say that is something we do not struggle with and feel confident that we did all we could do to fight for Benji’s life as long as we could. For 15 years, 3 months and 4 ½ days, we did everything within our power to give him the best care possible and keep him healthy and with us as long as possible. We had also been praying, especially in recent months- along with all of you, for God to heal and spare Benji’s life- IF it was his will; and we had continued to hope and believe that God’s will WAS for Benji to live. However, after speaking with the doctors on Monday evening, though we still welcomed a miracle if that was what God wanted to do, we believed we had been given the answer to what God’s will was, and that was not to continue Benji’s life on this earth. At that moment, our focus changed from saving Benji’s life to supporting him as he made the transition into eternity. It was about encouraging Benji (if he could hear us) to not be afraid of the unknown and to trust Jesus fully, to spend as much time with him as possible, to love on him as much as we could and to keep him as comfortable as possible until the end. And, for all of us who loved him so much- the process of grieving the tremendous loss we knew was coming, began.

The grieving began that evening; however, I discovered that there isn’t a lot of time to think about grieving immediately following a death. Especially one that is sudden. Yes, Benji had been sick for quite a long time, but we were by no means expecting to have to plan a funeral at that time. I remember the jolt I experienced when my Mom asked me if we had thought about where we will bury him. I lost it! Who plans where they’re going to bury their child? That’s not the way it’s supposed to work! (at least not to our minds.) The question Mom asked was only one of many questions we had to answer over the following six days. That was a rough week. So much “business” to do and decisions to make at a time when the last thing we wanted to do was “business”. I suppose it may have been a good thing we had to stay busy; otherwise, we may have simply crashed when we got home.

We returned home from St. Louis late Tuesday night and by Wednesday morning, we had our first meeting. Fortunately, we had friends and family to help us through the process of planning how we wanted to handle the viewing times and the memorial service. My dad, having been a pastor for 40 years was very helpful and the funeral director from Miller-Stewart Funeral home was awesome and was a great help as well! With the help of so many, everything over the weekend went very smoothly and while Benji would have hated being in the spotlight like he was that weekend, it was very healing to hear from so many people how much Benji touched their lives. Deciding on a theme for the memorial service was very simple; Benji’s computer password, “inChrist,” was a symbol of his faith in God and that became the central focus of the weekend. The memorial service focused on the message of being “in Christ” and was a beautiful tribute to Benji s as well. People who were a part of Benji’s life, and who knew and loved him gave the tributes from their unique perspectives. These people were his brothers, Aaron, Tyler and Cory, Sylvan and Connie Eash-his uncle and aunt, Anthony Troyer- his cousin, a school teacher- Beverly Eash, Karmin Henley- a classmate and good friend of Benji’s, and Dr. Michelle Howenstine, his pulmonologist from Riley for the last 9 years. All of them spoke about the things we all loved about Benji, and nearly all of them also spoke of his faith and love for God and how his life reflected that. It seems that “inChrist” has become a part of Benji’s legacy and we are discovering that in his short life, the way he lived out his faith in Christ, has touched the lives of so many people. Ultimately, faith in Jesus Christ is what really matters- it determines everything about us both here and in the afterlife. There is nothing more satisfying and comforting than to hear from someone how Benji (and the way he lived out his faith) personally touched their lives; and we’ve heard this from so many, including people who never knew him.

One of the things our sons (and others) mentioned in their tributes was how selfless Benji was and how he was often concerned about being a burden. This was something he didn’t express frequently however, I believe that feeling was constantly there for him and the times he did express it just broke our hearts! I spoke about the following in my February 25th journal entry. That night (the 25th) I was sitting by Benji’s bed while he was in a rather weepy state. He looked at me with tear-filled eyes and, in his whispery voice, brokenly said, “I….can’t…tell you…how grateful…I…am…to you…and Dad…for….putting…up …with me!” My heart broke and I of course assured him how there is no way we were “putting up” with him”; that there was nowhere I’d rather be than there with him. And, I wouldn’t have wanted to spend my birthday anywhere else. He wasn’t quite convinced but didn’t keep pushing the point and a little later, again with tear-filled eyes said in a whisper that was full of emotion, “Thank you!” :’( (Oh how we miss this boy!) At the memorial service, Aaron shared something that Tyler had written: “The only burden we are losing through Benji’s death is the constant desire to take his pain from him.” That was beautiful Tyler and I couldn’t have expressed all of our thoughts better!

My big disappointment that day was that we hadn’t set something up to make sure we knew who all attended the memorial service. We have record of each person that came through the viewing lines; however, there were a number of different doors into the sanctuary and relatively few people signed the guest book at the service. Because there were so many who had come to pay their last respects (around 700), and we left very quickly for the burial, we didn’t get to see nearly everyone. :( It would be so helpful if you could drop a note saying if you were there- unless you know that we know you were there. ☺

On the morning of Benji’s memorial service and burial, I decided I wanted to read to Benji from “Jesus Calling” one last time. We decided I would read at the burial and I chose to read a passage that I had read to Benji previously, and I think I read it to him that Monday night, during his final hours. The reading was from March 24-

“This is a time in your life when you must learn to let go: of loved ones, of possessions, of control. In order to let go of something that is precious to you, you need to rest in My presence, where you are complete. Take time to bask in the light of My love. As you relax more and more, your grasping hand gradually opens up, releasing your prized possession into My care.
You can feel secure, even in the midst of cataclysmic changes, through awareness of My continual presence. The One who never leaves you is the same One who never changes: ‘I am the same yesterday, today, and forever.’ As you release more and more things into My care, remember that I never let go of your hand. Herein lies your security, which no one and no circumstance can take from you.”

Isaiah 41:13 “For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.”

I didn’t know if I’d be able to make it through the reading but I was. When it came time to read, I felt the same strength rise up in me that I had felt numerous times over the last few months, when I wanted to fall apart but knew I HAD to pull it together in order to be there for Benji. Again, God gave me the strength to read to “Benji” one last time. Even though the body in that casket couldn’t hear me, (and I don’t know if Benji could hear us from heaven or not), as had happened so many times over the last month, as I read these words to “him”, they encouraged me. This time, they were an encouragement to all of us who are experiencing the pain of letting go of someone we love. They encouraged us to let go and place our complete trust in God; allowing him to carry us through this painful time.

I inferred above that the body in that casket wasn’t actually Benji. This is something we of course all know intellectually; however, I would have expected it to be more difficult for me to separate the two. When Neil (the funeral director) first opened that casket and we saw Benji’s body lying there, it didn’t seem like Benji; and I think each time I again viewed the body, I would think or say each time before walking away, “That’s not Benji.” Even now, (though this may change), when thinking about where we buried his body, I don’t feel a strong connection- because Benji is not there. Benji, the Benji we know and love, is actually with Jesus! As we drove away from the cemetery the day of the funeral, I told Allen and the other boys that I don’t know how I could handle it if I really thought we had left all there was of Benji in that hole back there. What a blessing and comfort to know he’s actually with God! I would just so love it if I had an actual image of what that looks like. Of course, from scripture, we get glimpses, and these glimpses are comforting; and many of the cards and messages we have received refer to them. I received a FB message from Pam Doughty that especially touched me, and continues to be a comfort to me. I’d like to share it with you:

“The wonderful thing about Heaven and eternity is that time there is NOT like time here. And if a day is like a thousand years, then Benji will have really just had a couple of minutes to look around.. to be swept up first by God, then by Jesus, and THEN by all of the saints who have gone before him.. in great big hugs. He will have looked around with eyes wide with wonder.. he will have experienced the amazement of the sweet smells, the incredible sounds... and then he will turn around and you will be there with him. He will never even have a chance to wonder where you are, because for him? It will be just a blink.”

Isn’t that beautiful? Thank you Pam!

We have been learning many things over the last couple weeks since the funeral. Things like what it means to grieve. And what it looks like for me is not the same as it is for Allen, or each of the boys individually. Not only are we learning what it means to grieve; it is intertwined with learning to adjust and re-adjust to life as a family, in the community and with our church family- and doing so without Benji. Following is a paragraph out of a letter Allen and I wrote to our church family.

***We would also like to share with you where we find ourselves in a more personal way. Where do we go from here? We find ourselves with many unanswered questions, most of which will probably never be answered in this lifetime; so, we continue to work daily at placing our trust in God. Trusting, (especially when we might feel it the least), in the knowledge of his perfect love for each of us, and trusting that while we don’t understand why he chose this path for Benji and our family, his ways are ultimately best. Our lives of caring for Benji, which for the last several months consisted of living with a nearly continual rollercoaster of intense emotions, has come to an abrupt halt and we’re left floundering a bit. We (Allen and Cindy), moving back into the community and being back home together as a family is a good thing, but is also an adjustment for each of us- all in different ways. Obviously, doing so without Benji creates an additional, painful dynamic. We all love each other and are committed to each other as a family unit, but each one of us will need to feel our way through this time as we readjust to life together at home and in the community, and begin to learn a new “normal” while grieving the loss of Benji at the same time. Again, we could use and would appreciate your prayers.***

I wonder how long it will be before nearly everything I see and hear no longer reminds me of Benji. Or how long it will be before I won’t want to talk about him constantly? When will I be able to go through all his things we brought back from St. Louis? (I’ve been in his room a few times to find some things but I haven’t yet had the courage or felt ready to go through everything in there; we just piled it in the room and closed the door until we’re ready.) How long will it be till I don’t have a deep craving to see every picture and video of Benji that I can find- especially those from recent years, while he still felt good? When will I no longer think I’ve got to make sure he’s up or doing his treatment- first thing when I wake up or when we’re gone in the evening? Will the time come when we’re sitting on “our” loveseat in the living room and it won’t feel like Benji should be sitting on “his” loveseat, leaning forward while doing his treatment and talking, playing a game, reading a book or watching TV? Will I ever be able to see the Food Channel or watch Chopped without the deep pain I feel at not being able to watch it with him again? Or will I always feel like there’s something missing when the family rides somewhere together and we only need five seats? Will I ever be able to look at Jalen without feeling pain for his loss; a best friend and cousin of Benji’s, who came to our school this year, largely because of Benji, and then spent the entire year without him and never again will go to school with him? Will our family ever feel complete again? I could go on and on because as those of you who’ve experienced this must know- memories are EVERYWHERE and life goes on as it was before except… except everywhere we look something seems to be missing because one of the major players in our lives, whom we’ve loved so very much, is suddenly gone.

Our grieving has really only begun. My father, who lost his identical twin brother at the age of 18, said he recalls that it didn’t really “hit him” until about six weeks later. I wonder if that’s how it will be for me. At times, it still feels as if we just left Benji back in St. Louis and he’ll be coming home soon. Although when I do things like come across his toothbrush that we brought home from St. Louis- (the one I used to brush his teeth one last time after he died), I get slapped with the reality that we no longer have need for that toothbrush and throwing it away feels like putting a nail in that coffin of finality. Or seeing his basketball shoes and letter jacket that he got this year and never got to wear. Maybe, by grieving little bits at a time as I’m frequently hit with the reality of what is, I won’t ever be overcome with a sudden, massive realization of what has actually happened. However it happens, one thing I know is that experiencing the death of a loved one is just plain hard! And I certainly wouldn’t want to have to go through it alone and without a strong faith in God. As difficult as it is, at least we have the hope of a future. It really isn’t over- I will get to see Benji again! (And while it may seem like a long time for me- for him it may be just a blink!) ☺ 1 Thessalonians 4:13-15 describes it well:

13 Christian brothers, we want you to know for sure about those who have died. You have no reason to have sorrow as those who have no hope. 14 We believe that Jesus died and then came to life again. Because we believe this, we know that God will bring to life again all those who belong to Jesus.

Thank you Lord for this promise of eternal life!

Having spoken so much about our grief and sadness, I want you to know that while we have many times of tears and sadness, we also still laugh a lot; and our hearts, despite the pain, remain joyful. I don’t think we (including my extended family) know how to be sad all the time- we enjoy laughing way too much. :D

I’m going to close with the beautiful and so appropriate words to the song, Praise you in the Storm- by Casting Crowns. Whenever I hear it, it reminds me that God has never left our side and is weeping with us.

"Praise You In This Storm"
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus:]
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus]

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Blessings and love to you all…

Note: the original links to Benji's memorial service on YouTube no longer work. The new links are posted at the bottom of this page, under "Links".

Wednesday, March 20, 2013 1:00 AM

I know I stopped writing rather abruptly but my intent was not to leave you hanging. I had started to write about our last day and hours nearly a week ago but wasn’t able to finish it. I’m going to try to do so now.

"My thoughts are nothing like your thoughts," says the LORD. "And my ways are far beyond anything you could imagine.” Isaiah 55:8

Obviously, if you read my journal entry from Sunday, March 11, you know that our perspective of what would bring God the most glory was obviously not the same as God’s. So in our intense grief, we are trusting that his ways are in fact “far beyond anything we could imagine” though we may never, in this lifetime, come to understand them. I can tell you one thing- a place that has always seemed bit like concept has suddenly become very personal and real. Prior to this, I always wanted to go to heaven and looked forward to meeting Jesus face-to-face, but to be honest, the idea of “standing around singing for the rest of eternity” never has appealed much to me (even though I love to sing☺). I cannot tell you what heaven actually looks like, and even if some of us think we have an idea, I doubt that any of us here on earth really have an inkling of an idea what it looks like. I do know that it is the most spectacular place we could ever imagine or experience. And as of this moment, the most spectacular thing I could experience, is entering the gates of heaven and seeing Benji walking with Jesus until he sees me; then running painlessly toward me (without the slightest bit of breathlessness) to greet me, with a body void of one scar, one bruise, one cut or other mark of pain. One day I will go there, but now, I not only want to go, I have a longing to get there. And, I don’t believe I will get there because of anything I have ever done- (I could NEVER, in my wildest dreams, EVER do enough good things to get me there because Jesus/God is the standard, which is perfection). I will go there someday because Jesus took the punishment I deserved when he died on the cross; and I have accepted that same free gift of salvation that Benji did; this is what has reserved a place in heaven for me, right next to Benji and I am looking forward to it! He was and is “inChrist”.

I posted Sunday night’s CB journal entry around 3:00 in the morning and I had been describing Benji’s restlessness to you; that only got worse as the night wore on. It was about 3:00 a.m., that I decided I needed to call Allen to tell him I wasn’t sure how much more time we had with Benji and that if he still wanted to spend some time with him; he may want to come now. I KNEW Benji was VERY sick and in a different way than he had been in the past and I believe God led me to do something that was completely out of the ordinary. (Typically, the one who slept at the apartment didn’t come in the next day till at least noon and we really tried to respect each other’s time away from the hospital.) Allen said he would come over and arrived by 4:00; three hours later Benji was intubated and never spoke to us again after that.

When Allen arrived, I was exhausted and weary from Benji’s extreme restlessness and so he took over while I laid down and tried to sleep a little. During the time from then until intubation, Benji’s ammonia continued to climb and his misery, pain and restlessness got steadily worse. One good thing through all this was that as far as we know, he recognized us up to the end, even though as the night wore on he appeared to have some more jumbled thinking. However, when we kissed him and told him we loved him just before we left the room when they were ready to intubate- though he was sitting up, he didn’t respond.

At 5:00 a.m. (CT), I sent out the following text to some family,
“Things have not gone very well overnight. Benji’s ammonia is back up to 159. He is VERY sick & very restless... Hopefully we'll be able to tell better by morning which way we're going but we really don't know how much longer he can hang on”.
It was at this time that my parent decided to drive down on Monday and after speaking with Aaron and Cory, we decided they would come with Grandma and Grandpa. Tyler, however was in Florida with some friends, so we told him to hang in there for now and we’d let him know if we felt he needed to come.

Around 7:00 a.m., Dr. Linn, who has had quite a bit of history with Benji, came into the room. We were very glad to see him because we’d had a new doctor over the weekend and as sick as Benji was, it felt really good to see a doctor that knew him well! It didn’t take him long to see that Benji didn’t look good and after some discussion with some other doctors, came back into the room to tell us that they felt it was time to intubate Benji. We had been told the day prior that there was a good chance this could happen soon, so we weren’t surprised. In fact, from our past experiences, we felt a sense of relief. Previously, being intubated was what Benji appeared to have needed in order for his body to recover from whatever the current issue was; and Dr. Linn told us he felt intubating would again give his body more resources to fight off the ammonia and other issues he was having. Ahhhh, a glimmer of renewed hope!

As I said, Allen and I kissed Benji and left the room to sit in the parent’s lounge during the intubation. There, despite the glimmer of hope we had, we both knew Benji was in very bad shape and we spent much of that time crying and praying. We were so happy when Dr. Spanella came to tell us that they were finished and Benji was doing great! We returned to the room and awaited Benji waking up. Based on his recent experiences with fentanyl, we weren’t surprised that it took several hours to wake up; but when he began to awake, he was quite fidgety and began pulling at his covers. When asked if he was hot, he nodded yes. Because of his fidgeting, he was given some adivan and he soon fell back to sleep; little did we suspect that nod was the last time Benji would ever communicate with us.

While Benji was sleeping, I called the liver transplant coordinator, wanting to see what was happening on the list and wondering if being on the vent qualified Benji to be moved higher on the list. It was at that time that I discovered Benji had been upgraded to a status 1B on Friday. The coordinator was unfamiliar with this process and could only tell me that the surgeon had told her on Friday she should classify him as that and so she did. I immediately got online and started doing some research. What I discovered again gave me some fresh hope but also caused concern. I discovered that being qualified 1A or 1B immediately put you to the top of the list regionally. The way the system typically works is, if there is are one or more “matches” in a local hospital, the person with the highest MELD score will receive the offer; if there is no match locally, it then goes to the closest match/highest MELD score in the region. St. Louis is in region 8, which includes MO, KS, IA, NE, WY and part or all of CO. If there is a 1A or 1B candidate in the region, all matching donor organs are first offered to these candidates, before going to the highest MELD score locally. According to what I read, at any given time, there are fewer than 10 people listed nationally, in the 1A or 1B category for liver transplant, My thoughts when reading this? “Yessss! Maybe now, Benji can get his liver TODAY!” The other side of this coin came when I read that in order to be listed 1A or 1B, the life expectancy is less than seven days. No one had mentioned that to us in regard to Benji but I thought I might have to ask some questions later on.

In the afternoon, they took Benji to get a full body CT scan. He was still sleeping (after the adivan) when they took him but I wasn’t really concerned because I expected him to awake again and the main thing we’d discussed with the docs was that high ammonia levels could cause swelling in the brain, which would typically causes disorientation. Benji had been very oriented or orient-able nearly the entire night. However, the look on Dr. Spinella’s face when he walked into the room after the CT scan was my first clue it wasn’t good. He told me we needed to have an immediate meeting in the conference room with all the docs. My first question was, “Is it bad?” He reluctantly told me yes but that we needed to meet in the conference room with all the docs to discuss it. I got up to go with him but on the way out of the room I got a couple more questions asked and answered. “Does he have swelling on the brain?”- “No”. “Is he off the list?” – “Yes.” (My heart dropped to my toes!) Allen wasn’t in the room right at that moment but as I was walking out, he came to the door. I told him the news as we walked arm-in-arm towards the conference room, where we knew more horrible news awaited us. It was there we were told that all or most of Benji’s organs were now so badly damaged that transplant was no longer possible. The dysfunctional liver had caused the damage to the other organs. The doctors were all devastated to have to tell us this, but they told us at that time that he might only have 2 to 3 days to live. We asked if they thought he would wake up again and could be taken off the vent so that we could say our goodbyes before he goes. They said that was their goal, but they couldn’t say for sure. They also said if we have family or friends who want to see/talk to him yet, they should probably get there yet Monday night or by Tuesday morning.

It was amazing how God’s grace again covered us and gave us strength in that moment; while this news was a kick in the gut and the worst news we could possibly have gotten and we were devastated and heartbroken; we were calm. I wasn’t hysterical nor did I feel the desperation I had felt when I thought Benji wasn’t going to get listed for liver transplant. We knew we had reached the end of the line and unless God chose to perform some incredible miracle soon, our time with Benji was critically short. (As I’m writing this a week later, I find myself feeling way more anxious then I was then and wonder how in the world I didn’t fall apart! I believe I know- it was because at that moment, God poured out his grace on us- and the grace he gave us to deal with that moment is not the kind we need today. Of course, we are relying heavily on his grace now, but I believe from day to day, he only gives us what we need at that moment. This is why it looks bigger now than it did at the time.) By now, it was 5:30 (St. Louis time), and since we had been given all the crucial information we needed at that moment, when the doctors opened it up for questions, I asked if it would be okay if we came back to them later if we had questions. We felt it was critical we get on the phone with family to make sure they could get there in time, if they wanted to come. Fortunately, Grandma, Grandpa, Dale, Aaron and Cory were only about a half hour away and we decided to wait to tell them until they got there. Tyler was our biggest concern- how quickly could we get him there from Florida. I called Tyler to tell him and Allen called Sylvan to ask him to see if he could get Tyler a flight out ASAP. I find it quite miraculous that within two hours of that phone call, Tyler was boarding a plane in Tampa, Florida; and despite having to fly through Atlanta, he arrived in St. Louis 5 ½ hours later. Thank you Lord for allowing Tyler to get there so quickly!

My brother Jerry and his family had already been planning to come down Monday evening, before we got the news, so they were already on their way when they found out. I know that most of both of our families would have liked to come, but not all were able to; the ones that were able to, followed each other down and arrived about 2:00 a.m. on Tuesday. It was Sylvan and Connie, Allen’s sister Rose, my sister Rose, her husband Jason and their family, and my brother Jim, his wife Shirley and daughter.

From the moment we heard the news, I wanted to spend every minute I still had with Benji- we all did. Once Tyler arrived, Allen, the three boys and I never left the room for any length of time until he was gone. Although Benji was not responding in any way, we encouraged everyone to speak to him as if he could hear us, and I sat down by his bed and began reading “Jesus Calling” to him again; stroking his head while I did so. Every moment was so special! At one point I had thought that some time, when the room cleared, I was going to climb into bed with Benji, and just hold him. I was so glad when one of the nurses asked if I’d like to crawl into bed with him, I said I absolutely would so she and a couple other nurses slid Benji over and got all of his tubes and wires out of the way, so I could get in. It turned out we all wanted to do that- Allen, the boys and I, and we each took our turn crawling into bed with him to get close to him and tell him how much we love him. For about the last 1 to 1 ½ hours of his life, I was in bed with him, up till just a few minutes before he went to be with Jesus. I never would have thought a couple days prior to this, that I would be telling my son to take Jesus’ hand and go with him when Jesus comes for him; but this is what I whispered to him numerous times throughout that night. I encouraged him not to be afraid and told him he could trust Jesus. I loved some of the things I was able to read him from “Jesus Calling” again. There were many comforting passages in there.

Once everyone had arrived, we all went into the room with Benji to sing and say our goodbyes. Once again, we sang Great is the Faithfulness and When Peace Like a River. These were not particularly Benji’s favorite songs; it’s just that the first time he had gotten so sick from the ammonia, I had sung to him in an attempt to calm his extreme restlessness. At that time, it seemed to be the only thing that soothed him. Because of his altered state of mind during that time, he didn’t recall the singing later; however, after I read to him my Caringbridge journal entry from that night, from that point on whenever he began to feel anxious, he would ask me to sing; these were the first songs I would sing. They did seem to soothe him. (If you’ve read my entry following his second bout with respiratory failure- from I think January 25, you may recall how he had conveyed to me that he wanted me to sing to him. Because he had been re-intubated he couldn’t speak, so he used his hands to pantomime a choir director leading a choir. I thought it was so cute!)☺ These hymns and are now so precious to me and will always hold a special place in my heart!

Benji never woke from his coma throughout the night, and he took his last breath at 7:30 a.m. Tuesday morning. He went in the same way most of us probably would like to go- he simply went to sleep and never woke up. At that moment, we were ready to let him go; his last ammonia level was up to 415 and he was so sick and had been so miserable. Many of us were there with him when he left this world, and it was very comforting for us to have so many family members with us at that moment.

If prior to this I had been asked if I would want to help bathe Benji’s body after he died, I think I would have said no. However, once Benji soul had left his body, the nurses asked if I would like to help bathe him and I said I did; suddenly it just seemed like a natural thing for me to do. I guess it felt like this was my final act of love for Benji and by helping to clean him up and prepare his body for others to view, I was “finishing” my job. It felt so right to remove all those bandages from his body and wash the adhesives and other things that had been so hard to wash off before, because his skin was so tender. It felt right to brush his teeth that we hadn’t been able to brush for so long and wash his hair. And I was able to lotion his arms and hands that had become so scaly and dry. I was able to put a real shirt on him and a real pair of pants.

(He’d been wearing partial shirts that I had created so his upper half didn’t need to be totally unclothed. Because of lines and ports and needles and wounds and leaking scars, etc, etc, he wasn’t able to wear a full shirt. So, I bought a few shirts for a couple bucks a piece and cut the bodies out of them, leaving the necks and sleeves attached. I had had to cut pants down the outside of the right leg- from the waistband to under the knee, so one of his IVs could be accessed. I had closed the pants with a large snap. One that I had cut was a pair of CCS sweats (from his school), which he really liked. His response when he saw I was going to cut them was to tell me he didn’t want me to use that pair; I told him it was ok, I would get him new ones later. It is heartbreaking to think that I won’t need to do that now!)

As I write this, I can scarcely believe what I just wrote; it is still all just so surreal! Benji is actually dead!?!? He’s never coming back?!?! Last week, while going through pictures to use for the viewing and memorial service, the pain I felt when looking at the pictures of Benji when he felt so much better, was indescribable! Seriously, I do not have words to describe that kind of pain. That pain is just as intense now, though it is also laced with joy and laughter at times, and an understanding that now that Benji is gone, we could never wish him back! I know we have a lot of very difficult days ahead of us and despite the fact that I will continue to trust God whether it makes sense to me or not, I do ask him sometimes what in the world he was thinking! (Yes, I ask him that and I’m quite sure he’s able to handle my weak moments and questions.) In the end, I really don’t have any expectation of ever understanding what God was thinking, because as Isaiah 55:8 says, his ways are far beyond anything I could imagine…. So, we continue on, hour by hour, day by day, resting (most of the time) in the fact that though we will never understand, there is a good purpose for this, and we will continue to walk in total dependence on him to carry us through the most painful times. We won’t be able to do it alone!

Quite a few of you have asked if I’m going to continue journaling here; I’m not sure…. I do plan on writing again regarding more of what has happened over the past week and sharing my thoughts about that and the memorial service; however, after that we’ll have to see where God leads me.

For those of you who wish to watch Benji’s memorial service online, I’m posting the links here. (I’m also including them under the “links” section below.) Because the service was 2 hours long (sorry :/ ), it had to be divided into two parts.
Part 1: http://youtu.be/6jlDtKYTiHs

Part 2: http://youtu.be/P3LrIsmut3U

Until next time…???
What “next time”? The future looks like it spreads out before me like a desert; barren and empty- nothing to write about. However, until whatever that “next time” is, I know we’ll badly need your prayers! We believe the worst is still to come and it would be so incredibly difficult to walk this alone! I know, from the way you have supported us so overwhelming up to this point that you will continue to keep us in your prayers. God bless you all for your diligence in prayer! Love to you all!!!

Oh, and I apologize to any of you who tried to stream the memorial service live online!! Due to technical difficulties, they were not able to do it. :(

Tuesday, March 12, 2013 3:14 PM CDT

As we can see by the hundreds of FB posts, most of you are already aware that this morning at 7:30, Benji lost his long fight with cystic fibrosis and peacefully went to be with Jesus. His soul made the transition from his scarred, bruised and battered earthly body to his perfectly healthy, heavenly body surrounded by Allen, myself, Aaron, Tyler and Cory; along with his grandparents and a number of aunts, uncles and cousins. A few weeks ago, I discovered Benji’s laptop password is “inChrist”. This “password” is also what reserved a place for him in heaven! :) He was so loved and his absence is already creating a HUGE hole!

Through the help of the family that drove down last night, we had the apartment packed and ready to leave by 2:00 this afternoon; and are currently on our way home. Your outpouring of support, encouragement and prayers is overwhelming! I hope to be able to respond more specifically at some point.

Just want to give a heads up to those interested in attending any of the viewings or funeral. We are planning to have the viewing Friday evening and Saturday afternoon and evening, at Siloam Fellowship; and the funeral on Sunday afternoon at Clinton Frame Mennonite Church. As we can, we will post more details.

THANK YOU again for your AMAZING support through this time!

In Christ alone my hope is found
He is my light, my strength, my song
This Cornerstone, this solid ground
Firm through the fiercest drought and storm

What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand

In Christ alone, who took on flesh
Fullness of God in helpless Babe
This gift of love and righteousness
Scorned by the ones He came to save

'Til on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live, I live

There in the ground His body lay
Light of the world by darkness slain
Then bursting forth in glorious Day
Up from the grave He rose again

And as He stands in victory
Sin's curse has lost its grip on me
For I am His and He is mine
Bought with the precious blood of Christ

No guilt in life, no fear in death
This is the power of Christ in me
From a life's first cry to final breath
Jesus commands my destiny

No power of hell, no scheme of man
Could ever pluck me from His hand
'Til He returns or calls me home
Here in the power of Christ I stand

Monday, March 11, 2013 7:19 PM CDT

I can't believe I'm having to write this post, but we have some heartbreaking news. Obviously the eyes that we see with are not God's eyes and what makes sense to us doesn't necessarily make sense to God. This afternoon Benji was taken off the liver transplant list because after a full-body CAT scan, it was discovered that he has severe damage in most of his other organs. We don't know how long he has; the doctors say it could be days. My parents and Cory and Aaron arrived about a half hour after we received the news. Tyler was in Florida but was able to catch a flight and should arrive here around 11:00 p.m. We are SOOO grateful for all the support and prayers you've given over the years and especially the last 2 1/2 months. We ask for your prayers in the coming days, weeks and months as we learn to walk, one day at a time, on a path we've never walked, nor wish to walk. We are depending on God's grace, that has sustained us for many years, to carry us through this time as well. Thank you all you for all the prayers and love you've poured out on us!

Sunday, March 10, 2013

It feels more and more as if we’re running out of time and in fact, we had a meeting with the docs today where they told us they’re nearly out of options. If a liver doesn’t come quickly, he may not stay well enough or live long enough to get one. Again tonight, I had to release Benji to God. I told him we are so grateful and have been so blessed to have had the opportunity to care for Benji for the last 15 years, but that I know ultimately he loves Benji even more than we do and wants only the best for him. At the same time, I told God we would really like him to entrust Benji to us for a longer period of time. And we would really like to see him enjoy those new lungs here on earth before God takes him. We sure don’t want to give Benji up, but for us, there is no other choice but to trust God and accept his perfect plan for Benji’s life, whatever that is.

We had another ammonia scare today (which at this point has improved somewhat but we still don’t feel like he’s out of the woods.) I don’t know if you know about the January 25th “ammonia incident” we had with Benji but that time was very different from this one. (If you’re not familiar with what happened at that time, you may want to read my journal entry from January 27.) That time Benji’s ammonia level reached 214 (normal levels range between 10 and 50). The way it affected him was this: he would have loved to sleep but couldn’t; he was UNBELIEVABLY restless and as the day wore on, he became more and more disoriented to his surroundings, to the point of not even recognizing Allen or I. It was an indescribably horrible time!

Last night (Saturday night), Benji’s ammonia level reached 241! However, his symptoms were very different this time. We don’t know what his ammonia levels were during the day yesterday because they had only been checking them once/day, but he was calm and very tired all day yesterday; he slept most of the day. When his brothers (Aaron and Cory) were here, he sat up with them for a little bit but that didn’t last very long until he wanted to sleep again. We kept checking him all day to make sure he was still oriented to time and place and both yesterday and today he was always sharp as a tack on that. He “complained”, (if you can call it that), of just feeling crappy all day and had some backache and nausea. On Thursday he had lost a lot of blood and had had surgery because of the bleeding so there was some thought that he was simply worn out from a rough couple days; but as the day wore on, I became somewhat concerned. Something didn’t seem right; he seemed sleepier than he typically does. His ammonia that morning had been 136, which was a concern, but it had been that high for a few days and he had seemed to be doing okay. Before I left last evening, I began asking questions about his blood gases and ammonia levels. When I discovered labs weren’t due for a while, I asked if they could do it right away, so I could feel better about leaving. (Sylvan stayed with Benji overnight). The result was not great. His CO2 levels were in the 80s (normal is 35-45) and his acids were out of balance. The CO2 was a good explanation of the sleepiness, which they were working on bringing down. I left, feeling uneasy about going, but told Sylvan I want to know if anything changes for the worse. Again, I don’t know if his ammonia levels had been climbing all day or not, but the 2:00 labs came back with an ammonia level of 241. During this time, he was extremely sleepy but he was always rousable and still very coherent. This was a huge comfort because we have been told numerous times since the first episode that it’s more about how he appears clinically then what the actual numbers are. However, there is no other way to slice it, this was not good! They stopped the proteins he’s getting through his TPN right away and by later this morning the level had dropped to 151. By early afternoon, it had dropped to 128. This is what I posted on FB at that time.

“Oh praise the lord!!! While Allen & I were on our knees begging God to spare Benji's life once again, we got the news his ammonia is now 128! When we heard, I began praising God and Allen just began shaking with sobs. When he composed himself & blew his nose, he said his nose was again burning with the smell of ammonia! (This very thing happened the last time we had the ammonia scare, after Allen had prayed and asked God to give Benji's ammonia to him!) Thank you Lord for having mercy on us right now and we continue to ask you to bring glory to yourself through Benji's healing!”

It was such a relief and gave us some hope. We really believed God had again given Benji’s ammonia to Allen and so we were quite surprised and disappointed when the next test came back in the 150s again. I can’t explain to you why, after Allen again smelled the ammonia, that the levels went back up. We can’t understand the mind of God- (or I guess we would be God); all we know is what we experienced and we’ll have to leave the explaining up to God.☺ Anyway, after being in the 150s(ish) range for most of the afternoon, the midnight level suddenly dropped to 112. We are so grateful and thanking God for the drop, but we certainly haven’t relaxed. I’ll see what the 2:00 a.m. one is before relaxing too much.☺

Benji continued to sleep deeply- in his near-comatose state most of the day; however, frequently there was someone trying to wake him to see if he was still rousable and coherent. Thankfully he always was. We had one good scare when Sylvan and Connie were ready to leave; I tried to wake Benji to tell them goodbye and for a little bit, I didn’t know if he was going to wake up. His mind was fuzzy for a little bit when I finally did get him to wake up, and we weren’t sure if he was coherent or not. However, once the fuzz cleared a little, it was obvious he was still very “with us”. HUGE sigh of relief!! He went back to sleep and all of a sudden around 6:00 p.m. he woke up. He seemed some better; he was sitting up in bed and even asked for his glasses and the TV remote. What a relief! He actually stayed completely awake for about 3 hours without any prompting. Around 9:00 – 10:00 he again wanted to sleep, but even though his CO2, ph and ammonia levels have been improving, he has become more and more restless as the night wears on. At this time, it is nearly 2:00 a.m. and he’s really struggling to relax. About every 20 minutes to ½ hour he wants to sit up for about 5 minutes then he wants to lie down again. He just seems to feel miserable; he feels nauseous and his back has been hurting him.

I’ve been sitting by his bed most of the evening and night. For a while, I read to him and later, after I thought he had gone to sleep, I sat on my chairbed to start writing this but it wasn’t long till he awoke and asked if I would sit by him. Of course I would!☺ So, I’ve been sitting beside his bed stroking his head and holding his hand while he tries to sleep. He is currently getting a treatment so I’m using this time to try to finish this. While his numbers are comparable to previous times when he was doing fairly well, at this point, there is no question he is not back to where he was a week ago, or even five days ago. He is very, VERY sick and I don’t know how much longer he can hang on. I cannot describe to you how hard it is to watch my child waste away because we don’t have a donor liver.

I keep going through everything in my mind; all the miracles we experienced at the beginning of this journey. The Ronald McDonald House apartment opening up, when nothing was supposed to open up until March. The insurance fiasco, which got straightened out in time for us move early like we had planned to do. And because of being able to move early, Benji was able to get the lung transplant on the day we were originally supposed to have moved here. The lungs fit so perfectly- even the different sized bronchi match; the surgeon says, “It was meant to be.” Benji does SO incredibly well immediately after transplant, surprising everyone. There were a number of other things during that time, which we felt were only because of God’s intervention and we couldn’t believe how God was blessing us! Way more than we deserved!

And then the liver went nuts. Since that point, God has continued to (we believe miraculously) pull Benji through situation after situation when we thought we were going to lose him. And then twice, the opportunity for him to get listed for liver transplant came within a hair of being denied. Again, we believe God intervened in Benji’s behalf. The approval process went so smoothly for listing; especially with insurance, which they said is typically the most difficult. We are quite certain the insurance fiasco we had prior to us moving down was what made that go so smoothly. Because of that, the top management at Indiana Medicaid knew Benji by name. Once again, wasn’t it obvious God had designed it so when it came time to do the liver transplant, there wouldn’t be any issues with insurance? So, Benji gets listed and we’re told a couple days to a week till he gets a liver. It’s now going on four weeks, and to be honest, it feels like God has suddenly turned his face away and is no longer hearing our prayers. What was the point of taking us through all those amazing, miraculous experiences if now, it may end with Benji not even being able to get the liver transplant? It simply doesn’t make sense. To my mind. If Benji isn’t able to get the liver transplant and doesn’t pull through, I don’t think any of this will ever make sense to me. So once again, this is where trust comes in. When NOTHING makes sense to my mind and things are beginning to look very bleak. When I’m losing hope that Benji’s going to get a liver on time; this is when the only thing I can do is trust that God knows and it all makes sense to him. I can’t say it feels good. It doesn’t. It’s heart breaking to think that I may be experiencing the last days with my youngest son, here on earth. I just know that no matter how discouraging this may yet get and how much more heartbreaking this may become, I serve a God who loves us and is trustworthy. If his will is not to prolong Benji’s life here on earth, he will be the one who will carry me through that most painful time, just the same as he has carried me over and over the last 2 plus months. And I do not believe my God only loves me and is a good God when things go the way I think they should. My source of peace, my source of joy will come from no other place or person than him, so how do I have a choice but to continue to trust?

In the meantime, we continue to plead for Benji’s life. We believe God has received much glory through this whole process and we believe he will receive even more honor and glory if Benji lives through this, to tell of all the miraculous ways God intervened in his life. We want to be able to see Benji get at least a little enjoyment out of those perfect-fitting lungs and so we continue to ask God for all of these things and for a new liver. All while understanding the painful reality that our desires may not be in line with God’s desires. We continue to covet your prayers for whatever lies before us.

Until next time….

Just got the 2:00 ammonia results- 156 :(

Friday, March 8, 2013

So, because of the life-threatening experience Benji had yesterday, he again had a build-up of fluids, which as before, collected in his lungs. The way they have been keeping fluids from building up in Benji is through dialysis (with that, they are USUALLY able to remove as much fluid as they need to); however, because of the bleeding and surgery yesterday, he was off dialysis for much of the day. In addition, because having anything in his stomach could cause Benji to start bleeding again, they changed all of his oral meds to IV (except for one, which they couldn’t do through IV- they are giving that one directly into his intestines, through a tube). As a result, Benji was flooded with fluids yesterday. Besides all the new meds that have been changed to IV, he also has the IV meds he was previously taking, his TPN, and IV fluids. In addition to these, he also got blood and blood products yesterday. Because of taking in more fluids than he could get rid of, his lungs started to fill again.

I noticed through the night that his breathing was becoming more and more rattly and about 5:00 a.m. I stepped out and asked the nurse if he had listened to Benji’s lungs lately and if he thought the rattling might be from a build-up of fluids in his lungs again. 5:00 happens to be the time Benji gets a chest x-ray every morning (yes, I said EVERY morning- at 5:00 because they like to have the results before rounds.) :/ By now, I recognize the signs that precipitate Benji going into respiratory failure and I was seeing them. The dark hollowed eyes, the rattle in his breathing, swelling and tight skin from the fluid build-up, his CVP rising (this measures the amount of fluid in his blood) and his blood gases were up… None of these were good signs.The one thing that kept me from getting overly concerned was that his SATS never dropped. However, because of his high CO2 level, (he was not expelling CO2 well enough), they did up the high-flow oxygen that he’s already on, from 15 liters to 25 liters. This was to keep him from decompensating- as he had the last two times he’d gone into respiratory failure. His breathing never did become an issue today and periodically throughout the day, I would ask him if it was getting any harder to breathe; he always said it wasn’t, which of course, was a relief!

I wasn’t at all surprised, when the results of the chest x-ray came back showing that his lungs had quite a bit more fluid in them. Yesterday, Benji was positive about 1.3 liters (meaning he took in that much more than he got rid of); however, last night they were able to run him negative, which brought him down to about 1 liter positive. After receiving the results this morning, everyone wanted to get the fluids off as quickly as possible, however, again, because of all the fluids/IV meds he NEEDS to have, it’s taking much longer than we’d like it to, to get it all off. Because of how long it’s taking, not much changed numbers-wise over the course of the day, except his CO2 levels did come down a bit. However, though he didn’t seem to be improving, neither was he getting worse. When I left the hospital this afternoon I thought Benji actually LOOKED worse (and sounded raspier) than he had earlier in the day and I still had some concern he might take a turn for the worse. Over the evening though, in my communication with Allen, it appeared Benji was improving some and I was delighted to hear from Sylvan late tonight that he had had to put his ear right close to Benji’s mouth to hear even a faint rattle in his breathing. Oh thank you Jesus!! (Sylvan, Connie and Aaron drove down tonight and stopped at the hospital before coming to the apartment.)

Around the same time as all this began this morning, they discovered more blood in Benji’s stomach; it was bright red, indicating it was a fresh bleed, not left-overs from yesterday. :( Because he has a g-tube, they can suction out any fluids in his stomach and this was how they discovered it. It was only about 100mls, which wasn’t too bad, but this was a huge disappointment and raised concerns as to whether or not he was going to begin bleeding again. They immediately upped the meds he’s taking for the bleeding and attached a suction tube to his g-tube. This is so that anything in his stomach will drain and they can keep a constant eye on the contents. Thank the Lord, he’s not had any more bleeding today! Pray we can keep that under control.

I’ve seen a big difference in Benji this time, regarding drinking. He has hardly said anything about not being able to drink. (They fortunately do let us use a swab to dampen his lips and tongue, but nothing more.) Only one time, did he begin to tear up when talking about it, but I think one of the main reasons he’s doing so well with it is that he’s really leaning on God to help him through this time. He is also totally aware how serious his situation is, and how harmful drinking can be right now and that he has no choice. At one point today, when the subject came up, I just told him that I was so sorry, but for now, we are simply going to have to depend on God to help him through this; it’s the only thing we can do. With an attitude of acceptance, he nodded his head.

There was one more thing this morning that was a concern; this was his ammonia level. They have been able to manage Benji’s ammonia levels quite well up until about the last week when they’ve hovered around 100. Today it was up to 136. We are praying we can get those back down as well as get all the other blood gases under control. Benji’s life is literally on the line at all times; any one thing could be too much for his system to handle and put him over the edge. We are so grateful to this AMAZING staff of doctors and nurses who have been able to manage Benji’s complicated system in such a way that he’s still with us! But, there is NO ONE we are more grateful to than God! There have been four highly crucial incidents over the past five weeks where God graciously saw fit to allow Benji to live. And who knows how many other things might have taken Benji’s life through this time if God hadn’t intervened; things could have tipped one way or another at any given time. Yes, I continue to believe God still has a purpose for you on earth Benji and you have an amazing story to tell of God’s obvious hand in your life!

For my birthday, I received from a friend, a devotional that I’ve mentioned a few times on here. May I just recommend this devotional to anyone, but especially to those in stressful situations? The name of the book is, Jesus Calling: Enjoying Peace in His Presence, by Sarah Young. From what I’ve read so far, it is a paraphrase of different scriptural concepts; put into words that are so easy to follow and they speak peace directly to my soul. I had read a few things prior to yesterday, but just started doing the daily reading yesterday. At that time, I read it to Benji as well and this morning I read today’s. While doing that it occurred to me that there was no reason why I couldn’t read the whole book to Benji, cover-to-cover, and not wait for it to be a certain day. If while reading he dozes off, it wouldn’t matter because it’s not a story; his subconscious could still be absorbing what I’m reading and if we finish the book, we can just start over again. Evidently, Benji finds these devotionals as soothing as I do, because he asked me to read more. I’d been reading to him for a little when we were interrupted; afterward, I asked if he’d like me to read more and he said he did. I posted one excerpt on FB today, that especially stood out to me.

January 6
"I am able to do far beyond all that you ask or imagine. Come to me with positive expectations, knowing that there is no limit to what I can accomplish.... Do not be discouraged by the fact that many of your prayers are yet unanswered. Time is a trainer, teaching you to wait upon me, to trust me in the dark. The more extreme your circumstances, the more likely you are to see my power and glory at work in the situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for my glorious intervention. Keep your eyes and mind wide open to all that I am doing in your life."
~Sarah Young, Jesus Calling

Each daily devotional contains scripture verses with it and this was one that went with this day’s:
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen. Ephesians 3:20-21

One of the things I noticed about the book is that the verse at the very beginning, before January 1, is what has become our theme verse for Benji. Jeremiah, 29:11 “For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future.”

And to give you a slightly bigger feel of the book, here are a couple more excerpts:

January 15
"My face is shining upon you, beaming out peace that transcends understanding. You are surrounded by a sea of problems, but you are face to face with me, your peace. As long as you focus on me, you are safe. If you gaze too long at the myriad problems around you, you will sink under the weight of your burdens. When you start to sink, simply call out “Help me Jesus!” and I will lift you up.

The closer you live to me, the safer you are. Circumstances around you are undulating, and there are treacherous-looking waves in the distance. Fix your eyes on me, the one who never changes. By the time those waves reach you, they will have shrunk to proportions of my design. I am always beside you, helping you face today’s waves. The future is a phantom, seeking to spook you. Laugh at the future! Stay close to me."

January 26
"Give up the illusion that you deserve a problem-free life. Part of you is still hungering for the resolution of all difficulties. This is a false hope! As I told my disciples, in the world you will have trouble. Link your hope not to problem solving in this life but to the promise of an eternity of problem-free life in heaven. Instead of seeking perfection in this fallen world, pour your energy into seeking me: the perfect one.

It is possible to enjoy me and glorify me in the midst of adverse circumstances. In fact, my light shines most brilliantly through believers who trust me in the dark. That kind of trust is supernatural: a production of my indwelling spirit. When things seem all wrong, trust me anyway. I am much less interested in right circumstances than in right responses to whatever comes your way."

And they go on and on. It's full of beautiful reminders of God’s love and provision for us. Of our need for depending on him and not worrying about the future. This has become a treasure to me, especially during this time! And I especially love how it is ministering to Benji as well! Thank you Sarah Young.☺

While there are many times lately that I feel like David so often did; like God has turned his face away and is not hearing our cries for help. Ms. Young’s writings and the scripture she cites with them, help turn my focus back on whom God is and helps to renew my trust in him. This morning when the whole fluid buildup thing first began was one of those times when I had to re-focus and again place Benji in God’s hands.

God, I will not try to figure out the future; it is a worthless exercise anyway. Instead, I will trust you to lead us, one day/one minute at a time. And I am thanking you now, for your answer to our prayer of Benji getting a liver. I don’t know how that will look. You know what our heart’s desire is in all this but I trust you to do what is best for Benji- and all of us. Thank you Lord!

Until next time…..

Thursday, March 7, 2013

More drama today; sorry to say it wasn’t because of a new liver and pancreas! :/ We are grateful to say that despite the fact that this could have been much worse, Benji is stable. Early this morning he again began bleeding internally and ended up losing close to a liter of blood. The docs decided they needed to do emergency surgery, which they were hoping to avoid doing. We were hoping not to have to sedate him at all until transplant because his liver had such a hard time working it off last time. However, there was no choice and they had to proceed. Fortunately, by the time they got inside, the bleeding had already stopped and we were VERY glad to hear the bleeding was from his esophagus (upper GI). If bleeding occurs in the lower GI, there is no treatment for it and the person will bleed to death. In surgery, they did a band ligation; placing four bands at various places on his blood veins. The bands “tie off” the portion of the vein that is bleeding. The following is a description of the cause of the esophageal varices (we know them better as varicose veins) and the bleeding; I got it from a Mayo Clinic website (http://www.mayoclinic.com/health/esophageal-varices/DS00820/DSECTION=causes):
When the blood to your liver is slowed, it begins to back up, leading to increased pressure within a major vein (portal vein) that carries blood to your liver. This pressure forces the blood into the nearby smaller veins, such as those in your esophagus. These fragile, thin-walled veins begin to balloon with the added blood. Sometimes the veins can rupture and bleed.

Benji seemed at peace when they took him back for surgery today, but not long before he had asked Allen, “What if I die while I’m in surgery?” Allen told him that he didn’t think he was going to but if he did heaven would be so much better than here. Thankfully, he did fine with the surgery and anesthesia and in fact, they were able to remove the vent BEFORE bringing him out of surgery. We weren’t expecting this at all, in fact, it’s the first time since transplant that he’s been able to be extubated in recovery. (I think this is a good indication that his lungs are still working well.) He also woke shortly after bringing him back to the room and while he’s been sleeping off and on all day, he’s been alert nearly all of that time. I am SO grateful for his clear mind and we are so thankful for God’s mercy to us today, in extending Benji’s life again.

Again, Benji is having to suffer his biggest torture. He is not allowed to drink for possibly up to a week because doing so could undo everything they just did. He seems to be accepting it better (for now) since we told him that he could have bled to death today and drinking now could cause him to do it again. This obviously puts some perspective to the situation and to a certain extent may make it easier for him. He is certainly still fighting to live, for which we are also grateful!

I got a call from the liver transplant coordinator today saying that though the amount of bleeding he had didn’t qualify him for an “exception” (which could bump him to the top of the list for a larger region, not just our hospital), Benji’s MELD score is 32 for this next week- up a tad from last week. We are just praying Benji stays well long enough to get that liver; I did a bit of research today and discovered that the mortality rate at 3 months for those with a meld score of 30 or more is quite high (meaning the survival rate is quite low). Depending on which statistics I read and where in the 30s you placed, the MORTALITY rate ranged anywhere from 50 percent to 83 percent. (The first one I read was the worst so I was especially happy to see they weren’t all that bleak!)

The coordinator also told me that the transplant surgeon had told her that Benji’s MELD score is not what has been keeping him from getting a liver; it’s that there have simply been no donors. I guess this is a bit of a dry spell right now. If nothing more comes of our experience with Benji, I hope the importance of organ donation becomes painfully clear. According to what I’ve read only half of all Americans consent to organ donation on their driver’s licenses and there are thousands who die each year waiting for an organ. According to a government website, 18 people die each day while waiting for an organ and ONE organ donor can save up to EIGHT people’s lives! (18 people nationally may not sound like that many, unless you know one of those 18 personally.☺) One mother, who donated a number of her son’s organs after he died tragically in a car accident, told me that if they hadn’t donated his organs, they would simply be dust now and this way a part of their son is still living in each one of the organ recipients. While I believe some don’t believe they should be donors out of certain religious beliefs, and some are just opposed to it in in general, I believe the majority of people simply haven’t thought about it or haven’t gotten around to it. These people have most likely not been closely acquainted with anyone needing an organ transplant. May I just encourage you, if you haven’t done so, to take a minute and do it now? This is an interactive website where you can sign up through your state: http://www.organdonor.gov/becomingdonor/stateregistries.html (I can’t create a link here so you’ll need to copy and paste the address or use the link at the bottom of the page- under the “Links” heading.)

Some have asked how I’m doing tonight. I’m doing fine (and I believe Allen is too though he was the one who was here through the worst part; I didn’t get here till after Benji was in surgery). When I first got the call this morning, I again began crying out to God. Why can’t Benji get a liver? Why, when it typically doesn’t take nearly this long, is it taking so long now? What are you wanting from us God? Is there something I’m doing or not doing that is keeping you from answering our prayers? Later, God again used his word and precepts to still my soul with the following daily meditation from “Jesus Calling, Enjoying Peace in His Presence”:

"Let me help you through this day. The challenges you face are far too great for you to handle alone. You are keenly aware of your helplessness in the scheme of events you face. This awareness opens up a choice: to doggedly go it alone or to walk with me in humble steps of dependence. Actually, this choice is continually before you, but difficulties highlight the decision-making process. So, 'consider it all joy whenever you are enveloped in various trials.’ These are gifts from me, reminding you to rely on me alone." (I was also so excited to read this to Benji-what a perfect word of encouragement for him today!)

Ps. 63:7-8 Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me.
James 1:2-3 Consider it wholly joyful, my brethren, whenever you are enveloped in or encounter trials of any sort or fall into various temptations. Be assured and understand that the trial and proving of your faith bring out endurance and steadfastness and patience.

Though I also had to give Benji to God again and consciously trust God with his life, I really appreciated the focus of this mediation- my total dependence on God. We are TOTALLY dependent on God to pull Benji through this difficult time; there is ABSOLUTELY nothing we can do to change the situation. And, the focus on embracing our trials because of what they produce in us has really been hitting me over the head recently. I’ve read the verses from James and received words from different people a number of different times over the last couple days- all with this same theme. Lord help ME to learn what you want me to learn through this time and help me become more of who you want me to be through this time. As I told someone else tonight who is struggling with a similar situation, I don't know if I can say that I consider it joyous to go through all this with Benji, but I can say that through continuing to lean on God, I have learned I can be sad but still have joy in these times. It is ONLY through my faith and trust in God and his goodness that I can maintain that joy. Without that faith, I would drown in my fears of what may or will happen. It's the only way to maintain my sanity and peace in my heart!

So, I’m at peace. I am still crying out to God to provide that liver in time and in HIS time and believing he is going to do so, but I am also choosing to trust him with the details. Thank you again, to all of you who were praying in regards to this today! And thank you as well to those of you are continually praying in general. We will NEVER be able to thank you enough!

Blessings and peace, until next time…..

Tuesday, March 5, 2013

“Suffering is the most acute trial that faith can face, and the questions it raises are the sharpest, the most insistent, and the most damaging that faith will meet. Can faith bear the pain and still trust God, suspending judgment and resting in the knowledge that God is there, God is good, and God knows best? Or will the pain be so great that only meaning will make it endurable so that reason must be pressed further and further and judgments must be made?

To suffer is one thing, to suffer without meaning is another, but to suffer and choose not to press for any meaning is worst of all. Yet that is the suicidal submission that faith’s suspension of judgment seems to involve.

There are times when we see glimpses of God’s ways but not enough to allow us to make true conclusions about what he is doing and why. Yet we cannot resist jumping to conclusions anyway. Then, being insistent as well as inquisitive, we refuse to suspend judgment, and our wrong conclusions so misrepresent God that we end by doubting him. But if the Christian’s faith is to be itself and let God be God at such times, it must suspend judgment and say, ‘Father, I do not understand you, but I trust you’.”
-OS Guinness, “Be Still My Soul”

I don’t understand why God hasn’t provided Benji with a liver and pancreas yet when everyone was so certain it would happen so quickly. I hope and pray, but I don’t know if Benji will remain stable long enough to get the transplant. However, I am again choosing to trust when I don’t understand and to still my soul by “resting in the knowledge that God is there, God is good, and God knows best.” It may be a suspension of my personal judgment but it is also the only thing that brings peace to my soul!!!

As I was sitting here this evening, I was struck by the peace in our hospital room. Yes, there are many sounds in the room; the hum of the Bair Hugger (an air mattress inflated with hot air to keep Benji warm- the dialysis at times makes him so cold it’s hard to get him warmed up). The sound of the high flow oxygen to Benji’s nasal cannula, the muted sounds from the hallway that filter into the room and the sound of worship music. All interrupted by the frequent sounds of pumps and machines alarming. However, even with the alarms, the room feels peaceful because Benji is calm. Tonight I am SO grateful that Benji is able to lie still and be comfortable, even when he’s not sleeping; he has none of the restlessness he has struggled with at times. Thank you Jesus for Benji’s clear mind and that he is comfortable and pain free! Thank you too that he is again able to drink as much as he needs and that there has not been any blood in his stools for two days!!!

One of the reasons my last few journal entries have been so short (one-page days) is because there’s not been a lot going on. I don’t mean that in the sense that there’s not much going on in Benji’s room because there is ALWAYS a lot going on in Benji’s room! (Just ask Shirley☺). However, there’s really little new to report. One-page days are often a good thing; it means there’s been very little drama- either good or bad.☺ I pray we continue to remain drama-less when referring to “bad” drama; however, bring on all the drama you want if it means we got our liver and pancreas! ☺☺ I’ll be delighted to start writing 6 page updates again! It does seem like it has to happen soon, doesn’t it? Of course it’s seemed like that for nearly three weeks now. :/ We just keep praying and trusting God to provide it in his time.

Benji’s lab results are remaining fairly stable. The things that concern us the most right now are the bleeding he had last weekend (which we pray doesn’t happen again or become a major problem!) and his MELD score; again today his MELD score is 29, down from 30 (his current listed MELD score). Fortunately, he doesn’t need to re-certify until Friday and we hope the labs for that day are again higher. As the MELD score lowers, his place on the list lowers as well.

I mentioned last evening that Cory came down to spend the week with Benji. I just want to tell you how touched I am when I watch the gentleness, tenderness and attitude of servant hood I see as he interacts with Benji and shows how much he loves him. I sat here watching this afternoon/evening while our 16 year old son sat in a chair right next to his 15 year old brother’s bed, willingly watching “Chopped” on THE FOOD CHANNEL- (because that is what Benji likes to watch when he’s in the hospital- even though it’s probably the last thing Cory would choose to watch). While sitting there, he reaches over and gently strokes Benji’s head (something Benji loves). I saw him get the therapeutic boots that Benji wears to prevent foot drop and gently put them on his feet. He asks Benji if he’s cold and if he’d like some more blankets and he tucks them around his chin. He gets him drinks and holds the cup for him as he drinks. It brings tears of deep emotions and joy to my eyes as I write this- these are some of the precious moments we are experiencing during this journey that we would never choose to be on! And the incredible growth and maturing we are seeing in our other three sons! These experiences are going to shape their lives forever and are going to make them better men. And if we were not on this undesired journey, they would never have had these growth experiences.

Aaron, Tyler and Cory- I am so proud of you all! You are amazing young men and while you are already serving God, I believe he has even more in store for your futures! The experiences you’ve had and things you’ve learned and had to sacrifice over the years as a result of your brother’s illness, have served to shape you into who you are now and have helped to prepare you for ongoing work in God’s kingdom. It is a delight to see you embrace these experiences, allowing them to shape you into better men instead of becoming bitter and angry.

Although I know I’ve frequently thanked you all for your prayers and words of support, I don’t know if I’ve mentioned all the gifts and cards that people have blessed us with. It has been UNBELIEVABLE!!! We are getting cash in the mail from people we don’t even know, let alone the numerous monetary gifts (cash or gift cards) we’ve received from many, many we do know! Not to speak of the sunshine boxes and other gifts you have sent to Benji specifically. You all are incredible and have humbled and shamed us through your generosity! Shamed us with our lack of reaching out to others. As Allen stated in his posts a few nights ago, we are forever changed through this experience! At the beginning, I started out writing everything down and planned to send out thank you cards to each of you. I still hope to do that at some point, but our time in the hospital has been such a roller coaster and filled with so much drama that I still haven’t gotten to it and the list has gotten unbelievably long. You have so overwhelmed us with your generosity that when I do get a chance to send out the thank you cards, I fear I will miss some of you. If I do, please forgive me; your generosity did not go unnoticed and was GREATLY, GREATLY appreciated! We pray you are blessed as you have so generously blessed our family!

Until tomorrow….... (when I hope to bring you news of “good” drama!☺)

Monday, March 4, 2013

Hey folks…. Just a quick update because I’m again too weary to write much. I hope my last post wasn’t discouraging to some of you; and if from that post, you are concerned that we’re “losing the faith”, let me assure you we’re not.☺ Our faith is just as strong as before; it’s just becoming more difficult at times to know how to handle and respond to certain things. I was just stating some of the questions and other things I’m struggling with right now. If it was me in that hospital bed my questions would be far fewer; however, trying to answer Benji’s “whys” (even when he doesn’t verbalize the questions) has been far more difficult than if it were Allen or me that were in his place. I read/heard something recently- (maybe in the book, Heaven is for Real), but this person said he believed the reason Jesus asked God, “My God, my God, why have you forsaken me”, (while he was dying on the cross,) was because God had to look away so he didn’t have to watch his son suffering. This certainly makes sense to me. He knew he couldn’t remove Jesus from the situation because his suffering and death were part of a greater plan; however, he had to look away because it was so painful to watch him suffer. I can SO identify. In fact, I expressed this idea to Benji when he was so frustrated and discouraged last evening; I told Benji that no matter how badly I would like to give him all the water he wants, I can’t do it because it could make matters worse and could actually contribute to killing him. I then told him I’m sure God was feeling the same way, to a much greater extent. I visualized God crying with us and wishing he could take Benji out of this suffering but cannot do so because he has a greater plan he needs to accomplish. I do believe God is weeping with us even though there are moments when it feels like he has “forsaken us”. I have started reading the book, “Be Still my Soul”, and I’m looking forward to what I can learn from this person’s experiences with sufferi ng. (And by the way, that book came to us anonymously in the mail so I want to say thank you to whoever sent it!)☺

A few things on Benji-
His discouragement seemed slightly improved today, however, it is all still SO difficult for him. I was so glad when Allen suggested to Cory yesterday, before they left for home, that he come back down today and stay here for the week. He got permission from school and today, he drove back down and brought Grandpa Troyer and Dale along. The current plan is for my Dad and Dale to return home- probably within the next couple days (not sure exactly when), and take my mom along (who’s been here for nearly 3 weeks, thinking Benji would be getting a transplant imminently.) :( I’m hoping Cory being here will make things easier for Benji!

There’s nothing new regarding transplant…..we’re still waiting. However, Benji’s remaining chest tube was removed today because it has barely been draining anything. I expected this might happen sometime soon, but wasn’t expecting it today. IF it doesn’t have be replaced again, this is a great thing for a couple reasons. First, it’s one less place to get infected and secondly, it is a sign that his lungs may be healing! The vacuum tube they had placed over the “hole” in his chest is still in and draining some; we assume they won’t remove this until transplant.

Benji’s water restriction is still on.☺ There was some miscommunication this afternoon and we thought he was going to be able to drink more. However, after telling Benji he could have more, we were then told that was not the case after all. Poor guy! It makes it even more difficult if he feels jerked around!

We thank you for doing so now and ask that you continue holding up our arms as we move through this trial, one step/day at a time! We pray we come out of this way stronger in our faith than when we came into it! And again, I just ask you to ask God to keep him from discouragement!

Until next time….

Sunday, March 3, 2013

I don’t think my heart could hurt more for my child than it does right now! It became especially clear to me tonight how easy Benji has made it for us over the years; by his mostly quiet acceptance of whatever he’s needed to endure. Over the past nine years there were occasional outbursts of frustration (more so in the last couple years) and it was not unusual for him to shed tears during tough times; but tonight I realized how much more difficult it would have been if Benji had always struggled like he did tonight! Tonight, I think he hit his breaking point and the thing that put him over the edge was when he feared they would again take away his freedom to drink. (While I know restricting fluids by mouth is necessary at times, the thought occurred to me last evening that maybe the doctor that orders this should have to also go without anything to drink as long as Benji can’t have anything; maybe it would happen less frequently. –you’ll need to forgive the irrationality in this emotionally-based statement.☺) The deep discouragement and frustration he expressed tonight just breaks my heart because there is nothing I can do to take this from him, nor is there anything I can say that helps him through this “physical torture”. (That may sound like an overstatement to use the word torture but this it is what it feels like to him.)

As I mentioned in my last update Benji threw up some blood on Friday. During the night on Friday he began having blood in his stools which they immediately began treating with a medication. In order for the medication to work, the stomach needs to be empty so once again they restricted his fluids through the mouth. (He’s still getting plenty through IV but that doesn’t do anything to quench his thirst.) They told him it would be for 24 hours unless there was no more blood in his stools; if this happened he might be able to drink sooner. Allen had been at the hospital through the night on Friday so I wasn’t aware of all this until I walked into the room yesterday; I was surprised when I walked in and asked Benji how he was doing and was greeted with a quivering chin and an instant flow of tears. Unfortunately, he continued to have streaks of blood in his stool the rest of the day and all night. This morning, however, there was no visible blood in his stool, though when they tested it, it still showed trace amounts. We were delighted that despite this, the doctor said, because Benji has a g-tube, he could drink small amounts at regular intervals, after which the nurses would immediately suction it out of his stomach, through his g-tube. We all cheered this afternoon when his stool showed no more traces of blood but were disappointed when we were told they wanted to make sure the blood was totally gone before going back to normal drinking, and they wanted him to wait until tomorrow.

In some ways, it seemed more difficult for Benji to be allowed to drink in small amounts than it has been for him not to be able to drink at all. It’s just enough to let him know he wants more and he just can’t ever get enough. And the mental aspect of having fluids restricted makes it so much more difficult! Most of us have probably experienced this when we have dieted; the more restricted we are, the more we think about what we’re not allowed to have, which makes us want it more! In order to try to distract himself from thinking about drinking, he asked for his book so he could read; however, he soon discovered his hands were too shaky to be able to hold a book to read. This simply added to his discouragement. The big crusher came when his stool this evening again had a blood clot in it! It was nearly too much for him to handle and his fear of being further restricted and his frustration spilled out as he questioned if this is all worth it! He’s stuck in this bed and can’t do anything anyway. And, there is just NOTHING I can do to improve things for him but cry with him, pray with him and ask for strength for him to endure. And tell him I’m so sorry and that God loves him; wants what’s best for him; is crying with us; etc. Somehow, in the face of his despair and frustration with the situation he finds himself in, and the way he expressed it tonight, these words just don’t seem like enough. Even telling him that Jesus can totally relate to him because he experienced deep thirst as well didn’t seem like enough. What do we do and say when our child is so sick, having to endure so much and we can’t take it away? I ask God over and over to give me the right words to say and to know what to do…. Its. Just. So. Hard. To. Watch!!! Please Jesus, give him some relief!

These are my questions and frustration at not being able to remove my child from this situation, to take away his pain, discomfort and feelings of isolation and I am at a loss to know what to do to comfort him. I plead with God to bring us a liver or to take away Benji’s thirst, etc. but so far, this is obviously not in God’s plan. And I wonder if it just sound like platitudes to Benji when I say things like God loves him and while praying with him, ask God to give him the strength to go through this? How do I help my child continue to trust in a loving God in these circumstances? I don’t have the answers; maybe some of you have some insight and ideas on how to do this. My belief that God loves and cares more about Benji than I or Allen do has not been diminished; however, aside from continuing to repeat these things to him over and over, I’m currently at a loss to know how to help him work through this. Pray for Allen and me, please, that we do and say things that will not only bring comfort to him, but will also help to increase his faith in a loving God.

Despite all that, we do have some good things to report: Benji has been up to sit in a chair for approximately 30 minutes each of the last two days. This is the first he’s sat in a chair for a bit. Also, his white blood cell count yesterday was down in the 13 thousands; normal is 10,000 and his has been ranging mostly in the 20s and at times all the way up to the 40s. The white blood cell count is an indicator of possible infection so to hear it was down into the 13s was awesome news. However, it was back into the 20s again today. :( No one is really sure what might be causing the fluctuation in the WBC count but it does concern us because if it gets too high, and they fear he has an out-of-control infection, they won’t do transplant; at least at that time.

They have also seemed to find something to help with the drainage problem that has been coming from the hole in his chest. (Though his cut from his transplant surgery was originally healing quite well, the problems with the liver have slowed down the healing; and where this hole is, it actually reversed some of the healing. The stitched tissue had been growing together but it began separating again. It ended up coming apart, all the way through, into his chest cavity.) It’s not a very big hole- probably and 1/8” to a 1/4” in diameter; however, it was draining more than his chest tube. This was over- saturating the bandages so quickly; so much that the bandages often couldn’t contain all the fluid. This meant they frequently needed to change his bandages, causing more skin tears. The moisture and constant bandage changes were also making it difficult for the skin tears to heal. It’s too difficult to explain exactly what they did, but to say it in very simple terms, they put a tiny suction cup over the hole. The “suction cup” is attached to a hose that drains into a container. This seems to be working amazingly well! The drainage has slowed way down, there is no leakage meaning there are no saturated bandages sitting on his skin, which better allows the skin tears to heal. It also means they don’t need to constantly change his bandages (which created more skin tears). It would be great if the hole heals on its own, but if not, they hope to be able to wait until transplant when they’ll re-stitch it. We are so grateful they are managing the drainage from the hole and for the improvement in in his skin tears and wounds! Thank you Jesus!

Lastly, his chest tube drainage is down to practically nothing! Normally, this should have stopped 4 to 6 weeks ago, as the lungs healed; however, it just continued to drain and drain, and in large amounts. It could easily be that the pleurodesis they did about 10 days ago is making the difference. I don’t know if they’ll remove this last chest tube before transplant because they don’t want to have to sedate him for anything else until then; and if they removed it and needed to reinsert it, they’d have to sedate him. (The reason they don’t want to sedate him is because it’s very difficult for his liver to work off a sedative; however, if he continues to wait for transplant indefinitely, they may decide they need to do it anyway.)

I didn’t get all his lab results from this morning, so I’m not sure what his MELD score would be today. Even though his score will be 30 until next Friday and today’s score wouldn’t make any difference in his placement on the list, I like to see if he is trending one way or another. Since originally listed, his score has been trending down and if yesterday’s score had been used, it would have been 29. :( As I’ve stated previously, if this continues, his wait for transplant may be hugely increased which we don’t even want to think about!

So tonight, I come to you Lord, grateful for the improvements, yet full of questions and frustrations. Not knowing what to do or say to comfort my child through such a difficult time! You are going to need to show me and please let Benji feel your love and care in a huge and tangible way so that he has no doubt it’s from you. Let him know beyond a shadow of a doubt that what we tell him now, what he’s been taught from scripture all his life and what he professes to believe about who you are, is truth. Lord, you are the great healer and I continue to believe you will heal Benji; but I plead with you to bring him a liver quickly and to let his body heal! At the same time, I understand that my ways are not your ways, nor do my desires always line up with your ultimate purposes and I will praise you and give you the glory no matter what the outcome. Be my strength….

Until next time….

Friday, March 1, 2013

I have been putting off writing this all evening long and it’s now 1:00 in the morning and I’m just starting. I’m not sure what all the reasons were for putting it off but I think the main reason was that I came home from the hospital this afternoon feeling rather discouraged and I just tried to put it all out of my mind for the evening. If you’re a regular reader of Benji’s CB site, you may have picked up on the fact that I will frequently process my feelings while I’m writing and through doing this (and using you all as my sounding board), by the end, I’m usually able to recapture my spirit of joy out of my renewed faith in who God is and how much he loves us. I knew once I started writing, I’d have to deal with what I was feeling and I simply didn’t want to go there.

Off and on throughout the evening, I’ve been telling myself the right things, but the head knowledge hadn’t gotten to my heart yet- and still hasn’t completely). While writing helps me process, there isn’t much that soothes my spirit and directs my focus, more than listening to worship music; music that glorifies God and focuses on his love and goodness and my nothingness without him. In order to improve my frame of mind before writing this, I turned on my Pandora worship station about an hour ago. As I took up my computer to write a quick update I was hoping to just write a short update and be done for tonight; however, I believe God led me to share more because the exact second I began typing “I have”, I heard through my Pandora, the song…Why do I feel discouraged. Once again, I was struck by the biblically based, inspired words of some song writer a long time ago, who appeared to have had some struggles of their own. These are the words God used to speak to my heart and help begin to calm my fears, anxiousness and discouragement.

Why should I feel discouraged
Why should I feel discouraged,
Why should the shadows come,
Why should my heart be lonely
And long for Heav'n and home?
When Jesus is my portion,
My constant Friend is He:
His eye is on the sparrow,
And I know He cares for me;
His eye is on the sparrow,
And I know He watches me.

I sing because I'm happy, (I’m happy)
I sing because I'm free, (I’m free)
For His eye is on the sparrow,
And I know He watches me.

"Let not your heart be troubled,"
His tender word I hear,
And resting on His goodness,
I lose my doubts and fear;
Though by the path He leads me
But one step I may see:
His eye is on the sparrow,
And I know He watches me;
His eye is on the sparrow,
And I know He watches me.

Whenever I am tempted,
Whenever clouds arise,
When songs give place to sighing,
When hope within me dies,
I draw the closer to Him,
From care He sets me free:
His eye is on the sparrow,
And I know He cares for me;
His eye is on the sparrow,
And I know He watches me.

There is SO much here that spoke directly to how I’ve been feeling. For example:
"Let not your heart be troubled,"
His tender word I hear,
And resting on His goodness,
I lose my doubts and fear;
Though by the path He leads me
But one step I may see

When hope within me dies,
I draw the closer to Him,
From care He sets me free

Even though I knew these truths in my head, the music was able to break through to my heart (a little bit) and begin to quell some of my discouragement and anxiety. I know you’ve been praying for this, but just in case, would you pray fervently that Allen and I do not lose our joy. Not only for our sakes, but for Benji’s sake also; how much better will he feel if his mother and father carry a joyful spirit through this painful trial that we’re in, despite the the scariness and pain. I already am feeling better just writing and listening to music.

Regarding Benji: We’re so happy to tell you that Benji slept well again last night and had another decent day with normal clarity of mind. This is ALWAYS a GREAT thing and really shouldn’t cause discouragement. And it didn’t. What did were a couple things. First, as of today, Benji’s MELD score is down to 30 (from 34 when he was first listed); however, we don’t believe the scores reflect how badly he’s doing. While we were glad to hear that he’s still at the top of the list at Barnes Jewish, they have no way of being able to tell how many others are on waiting lists at all the other transplant centers in this region. (I didn’t originally realize that “the list” didn’t include the lists from other centers. :(

Another thing that shook me up pretty good today was one time when Benji got nauseous and vomited a bunch of a watery liquid that was colored bright red (blood). I guess this is something common in end stage liver disease (I won’t go into why tonight because I’m too tired).☺ From speaking to the nurse and doctor, if this doesn’t continue it’s not a big deal; we pray it doesn’t. For me however, it signals a worsening of his liver function and I began to fear that we’re running out of time.

I have to go- can’t stay awake, but please continue to ask God for his will to be done- which we hope and pray is to provide Benji with a liver/pancreas before it’s too late. I’ll try to write more later.

Until next time….

Thursday, February 28, 2013

From Allen:

Hello friends, I would like to recognize the hours and hours of time that Cindy has put into keeping you all informed of Benji and our lives, especially in the past couple months. I have appreciated it so much. Thanks sweetheart! While I am not very good at this I will attempt it.

God has been good to us and He will continue to be no matter the circumstance. If it were not for Him we would not be here in the first place, nor would we have the gift of salvation so rich and free! The last few months have been so different than we expected them to be. The daily struggle of seeing Benji feeling better one hour then feeling very different the next. He has been such a trooper through it all even though we keep having to reassure him when things are not going so well that Jesus is right here in the room with us. He will never leave us nor forsake us (Deuteronomy 31:8) and He knows what is going on. He knows what we need and when we need it, even though we wonder sometimes if He knows the urgency of the situation like we do. ☺ Of course we know that he does but our human nature can quickly take over if we let it. I find myself overcome with fear sometimes when it comes my turn to be at the hospital with Benji overnight. I can’t quite explain why that is but I continually find myself needing to give it all to God to take care of, knowing that I cannot handle this on my own- or at least not very gracefully. ☺ To be honest, there are times I have felt somewhat trapped here in St Louis, because I really can’t go back home for fear that Benji will take a sudden turn for the worse. I cannot imagine leaving Cindy here alone with Benji and not being here if something happened. I think it would tear my heart out!

Benji has been so patient through all of this. He hardly ever complains until things seem scary again then he has some anxiety, however God has given him an amazing strength that we are thankful for. We keep hearing from the Doctors and nurses how easy he is to take care of, which is a blessing to us. I am so thankful God has blessed us with our other three boys as well- Aaron, Tyler and Cory. They have been “through it” as well. I am amazed how they have been able to focus on things at home under the circumstances. (Very proud of them)

Our business at home has been blessed with a lot of work and I want to thank Kenny and Sylvan for filling in and keeping things going like they have. (Another huge blessing)! God walked us through some changes last year with the business that had us restructure some things with personnel, which was another God thing or I would not be able to be here nearly as much.

I am so amazed at the amount of people that have been supporting us through prayer and other various ways. We never imagined, in our wildest dreams, the vastness of the support we have received. God has blessed us so much through all of you- so many of you we do not know personally. It has given us a sense of shame with how little we have done for others in the past. Our lives have been changed through all of you!

We continue to trust that:
God will provide a liver and pancreas for Benji
He will continue to strengthen us and be glorified through us
We can be faithful to His call whatever that may be

Thank you again so much for ALL your support. We are humbled to have so many prayers lifted to the throne on Benji’s behalf!

Allen

From Cindy:
I am so excited that Allen posted tonight. As I’ve previously stated, I don’t enjoy writing that much but Allen enjoys it even less; I'm encouraging him to do it more though! (And by the way, you all, waiting to hear what’s happening are what keep me doing it. I thank you because this record of the past nine years has become a treasure!)

I’ll just give you a quick update on Benji’s day. We are so happy to tell you that today he was back to the way he was over the weekend; just not quite as quick to smile without his brothers and cousins. His blood pressures are back to normal today and it has been so drama-free it wasn’t even a “one-page day”; I think I can do it in a half page! (That has to be a record!) ☺

Mom came over (to the hospital) early this afternoon to relieve Allen while I did some organizing around the apartment, which I’ve needed to do for a while; then I ran to Wal-Mart to get a few things before getting to the hospital late this afternoon. When I got to the room, the physical therapist was in the room working with Benji and while she was here she had him get out of bed and stand for a little while the nurses changed his bedding. The physical therapist had him wrap his arms around her neck to support him while he stood and we all cheered when he stood for a minute and a half. It struck me then, what a vivid picture this is of how weak and sick Benji has become over the last month.

However, I’m grateful that he has continued to stay fairly stable (with small ups and downs) and that today again he was very alert and clear-minded. He was on the laptop much of the day; part of the time he was watching movies or shows and he was also on FB some. He had a little bout of sadness and discouragement tonight after being on FB and I again encouraged him to not go on FB if it makes it harder for him. He told me that there were things on there that made him happy too, like the video his cousin, Melissa Raber, posted of her husband Joseph playing with their baby daughter Adelynn. It is a double-edged sword that he can’t seem to get away from and the longer it goes, the more he just wants to get out of here. We just continue to pray it can happen soon and his heart’s desire will be granted!

On to some other things; I had mentioned that Aaron had come down and surprised us Tuesday night. It was nice to see him and he stayed with Benji while Allen and I had a date. However, he woke up yesterday morning with a temp and a sore throat. He felt bad all day- he was also achy, had a head ache and slept most of the day. He felt only a bit better today but I saw he had a red and swollen tonsil. He drove back home today, not feeling well. I certainly hope it’s just a mild case of the flu or a cold and doesn’t last long. You can pray for him too. (Of course, he wasn’t able to visit Benji since Tuesday evening which is disappointing for both of them.) :(

And, we had a nice surprise this evening. One of my cousins from Mississippi, and her husband, whom I haven’t seen for eight years, stopped in. (John and Cheryl Mullet) They were on their way to Wisconsin to see his brother who is terminally ill and decided to make the trip through St. Louis. It was great to see them and chat for about an hour.

I don’t have much more for tonight, except to say tomorrow Benji gets re-certified for the transplant list. (This is something they have to do once a week when he’s on dialysis and the blood work from tomorrow morning’s labs is what they’ll use.) Is it appropriate to ask for bad test results for just one day?☺ Again, we know God knows about his MELD numbers and will take care of things according to his plan- I’m just thinking he might need some help.☺

Until next time….

Doggone-it! I didn't make it in a half page after all; I am just too long-winded for that!☺

Wednesday, February 27, 2013

Its days like these when things don’t go so well and Benji feels so crappy (to use a medical term☺), that we wonder if Benji will make it till he gets a liver. He slept well last night, but there were a number of other complications today; beginning first thing this morning when his blood pressure dropped to dangerous levels. Fortunately with multiple types of treatments they were able to get that back up by around noon. This is probably the reason he felt so bad today. I am not very familiar with how low blood pressure can affect a person, so I’m not sure if Benji’s extreme sleepiness today was also connected to that

Though we were glad to see that Benji appeared to be sleeping very soundly this morning, we got concerned when around 2:30 this afternoon Allen tried to rouse him and couldn’t. When I saw Benji wasn’t awaking, I went over and shook his shoulder and called his name several times as well, but he still didn’t respond. After panicking a bit, we were finally able to get him to wake up, but this greatly concerned Allen and I; Benji has never been a heavy sleeper and it’s not typically very difficult to rouse him. Later one of the doctors was in the room and tried to wake him to ask a question and again he didn’t respond after several tries. She then looked at us for permission to push on his throat and as soon as she did this, he awoke. I wish I had asked her what that was all about and what spot she had pushed but at that moment there were still a lot of people in the room and I was just leaving so I’m still not sure what she did. It appeared that she knew that by putting pressure on a certain spot on his neck it would determine if he was conscious and would immediately wake a conscious person. Whatever she did, it worked because Benji responded immediately with an expression of pain. I’m sure this is something Allen and I will be keeping a close eye on!

Another issue is the fluid that is still draining from his chest cavity. It has slowed down drastically and in fact, the right chest tube that was just reinserted last week was removed on Monday because it was barely draining. The left chest tube has really slowed as well. This is all good news and something we have been praying for, but the problem is that the fluid in his chest cavity is not only draining through the chest tube, it is also seeping through the scar from his transplant surgery and the insertion site of one of his former chest tubes. Both of these sites had formerly been healed shut; however the surgeon explained to Allen last week that when the liver is not doing its job, the tissue begins breaking down and this affects the healing of his wounds. The site of his former chest tube has increased in size in the last couple days and these two sites are leaking nearly as much fluid as the chest tubes. His inability to heal properly is of course a concern and the relatively large amounts of fluids that are seeping through are also causing some other problems.

As a result of the breakdown of tissue, Benji’s skin is very fragile and it is so sad to look at his little body! It is peppered (especially the chest, back and arms) with bruises, scars, holes, open wounds and skin tears. The areas on his chest that need to be bandaged are his port access site (top right), his broviac (a broviac is another IV access point and it is located just above the port site), his clamshell scar from the surgery (this scar stretches across his entire chest, but the hole where the leak is occurring is approximately in the center of his chest cavity), the old left chest tube insertion site (toward the left side under chest cavity), and the current chest tube insertion site (a little further left than the other and down a bit further). Because of all the leakage, some of the dressings need to be changed at least once per shift and at times it drains so badly they have to be changed every hour or two. Every time a dressing is changed, the adhesives from the bandages create more skin tears, even though they are using the gentlest bandages they have. As a result, dressing change is becoming more and more painful for Benji. Today one of the dressings had to be changed several times and surgery came down to check out the leaks to see if there’s something that can be done to help. We sure pray there is but fear it won’t heal properly until he receives that liver.

The plan today had been to change the filter on Benji’s dialysis machine (something they have to do every three days); however, because of his unstable blood pressures today they decided to wait until tomorrow. The filter has to be changed every few days because as it filters the poisons out of the blood, it also keeps any clots from getting through, which can clog the filter. Unfortunately, the filter became clogged sooner than they expected and around mid-afternoon the machine shut down. Allen and I had just gone down to get a bite to eat so Benji was in the room alone when this happened. The shutdown caused a flurry of activity and when we came back up the room was full of people. At this stage, understandably, every time there is a cluster of people talking in or outside of his room, or there is an increase of people and activity in the room, Benji immediately becomes anxious and wants to know what’s going on. This flurry of activity was very similar to how it looked in previous moments of crisis such as when he went into respiratory failure. When we came into the room we saw he was teary and could tell he was anxious. After talking to him a little, we realized it was because he didn’t know what was happening with the dialysis machine or if there was something else wrong or how serious it was. The nurses and doctors were all scurrying around doing their jobs, not realizing how this might look to Benji. Fortunately, after Allen prayed with him and I explained to him exactly what was happening with the machine, and told him that it had nothing to do with any changes in his health, he was able to relax. While Benji is spiritually prepared to die, he wants very much to live and I can only imagine how scary these moments must be for him, knowing that there is a possibility he may not live through a serious setback! My heart just breaks for him and what he has to deal with at this age! They did get the filter changed and everything seemed to be okay when I left and I haven’t heard anything from Allen (who’s at the hospital) since then, so I’m assuming things have settled down.

Over all, today appeared to be more drama than it was danger but it is on days like this that we are tempted to fall into that dark hole of fear, dread and discouragement. It is ONLY through going back to the truth of God’s word, focusing on that and reminding ourselves that God is in control and he has a plan. And through reminding ourselves that God is totally aware of the entire situation and we can trust in his ultimate goodness and love, that we can be at peace, knowing that worrying and being fearful will not change a thing- it will only make us miserable! We continue to PRAY that a liver will be available while Benji is still healthy enough to do transplant but we CHOOSE to leave the details to God. This is how we continue to walk through the pain and this deep valley with joy in our hearts! Pray that Benji can also feel more of this calmness and peace and that we can find the right way to help him through these times.

Until next time…..

Tuesday, February 26, 2013

I have very little to update on Benji tonight and THAT is a good thing ☺ (except- it also means no liver or pancreas yet- that doesn’t SEEM like a good thing). :( Otherwise, Benji’s blood test results again for this day stayed within acceptable enough ranges that he remains stable. The bilirubin is one that could cause us some anxiety if we let it. You may recall that was over 20 a couple weeks ago (they shouldn’t be higher than 1.2); the bilirubin numbers have been steadily dropping and today it was only 4.4! While you would think we’d be delighted with this, it actually concerns us because it means his MELD score could be lowered, which means he may have to wait longer for a liver. :( They have to register his numbers once/week and his MELD score from last week was 32; if today was the day to re-register him his MELD would only be 29. Thursday is his day to re-register so we really hope and pray he can get that liver and pancreas before then. However, again we know that God has everything in his control and he knows all about the MELD score and every other little detail. This is the only way we can keep from becoming anxious- continually reminding ourselves of this. Just a side-note, Allen spoke with the liver transplant coordinator from Barnes today and she told him they have not had one offer since Benji was listed; (and, that while it’s always hard to know, they had no expectation of it going this long without an offer.)

That’s about it for today and since there’s not much more to report on regarding Benji’s health, I decided that despite Benji health problems, we are SO blessed in SO many ways and tonight I’m going to make a list of things I am especially grateful for- at this moment. So…..
TODAY I am especially grateful:
1. That we serve a loving, merciful and just God, who wants nothing but the best for every one of us!
2. That Benji got listed at all for liver transplant!
3. That we have insurance and that approval for this transplant was so easy!
4. That Benji is currently healthy enough to remain listed!
5. That I am able to be sitting here tonight writing this, instead of mourning the loss (or imminent loss) of our son!
6. That I got to see our oldest son Aaron, after he drove down here today and shocked the snot out of Benji and me! (Allen knew) It was so good to see him- especially since he couldn’t be here last weekend!
7. That Benji’s mind is clear!
8. That Benji has been able to sleep at night!
9. That I got to go on a date with my husband tonight! Yes, REALLY! ☺ For dinner AND a movie! Benji got to spend the evening with his brother while we were gone. (It was so good to get out and take out minds off this for a while.)
10. That Benji has been more like himself lately and has even been able to make wisecracks and joke and sometimes smile with us!
11. That my mom is here with us and did the wash yesterday and made some mashed potatoes today (especially for Allen)!
12. That my husband has a job that allows him to be here during this time!
13. That we have wonderful business partners who are allowing Allen to take this time off!
14. That we have three other amazing sons who I am so proud of and have been so gracious about having their father MIA for the last two months, and a lot longer time than that for their mother!
15. That we have four sons who love each other very much!
16. That we have INCREDIBLE support- in SO many ways- from so many!! Friends, family, acquaintances and strangers!
17. For the prayer support we have received: we couldn’t ask for more. We are so blessed to have all of you walk this journey with us and lift us to the throne time after time after time!
18. That Benji is being cared for in such a WONDERFUL hospital with an incredibly caring team of doctors and nurses who have invested themselves in Benji’s well-being!
19. That there are actually people (doctors/surgeons) who are skilled enough to be able to figure out, understand, facilitate healing (temporarily or long term), and even take organs from a donor and put them into a different person- and, make them work!
20. That we have an amazing apartment for an unbeatable price!

I’ve decide to stop at 20, but I know I could go on and on- we REALLY do have so many things to be grateful for and we thank you Jesus for all these blessings! This is obviously not all-inclusive and I’m sure I’ll think of something I really SHOULD have said, as soon as I’m finished posting.

That’s all for tonight…..just wanted to focus on the blessings and not the trials.☺ May you all be richly blessed as well! And of course we ask for your continued prayers, especially for that liver and pancreas!

Until next time….

Monday, February 25, 2013

So the last I posted was late Saturday night and I’m so pleased to tell you that both Saturday and Sunday nights Benji’s slept all night long- and solidly so! Thank. You. Lord!!! It made such a difference in him and confusion-wise he was a different kid, both yesterday and today!

We had another busy weekend. Cory, Tyler, Sylvan and Connie came late Friday night then on Saturday evening my brother Steve and their three children, (Landon, Lexi and Annika) came as well. We took Steve, Landon and Lexi back to see Benji yet after they got here Saturday evening, but by that time Benji was so tired he couldn’t even open his eyes to talk to them. Fortunately, by the next day (Sunday)he was a new kid and could enjoy having them there. He even cracked a joke to Landon (who’s 16) that Annika (who’s 6) probably thinks he looks like a freak.☺ I don’t think she thought that but he certainly doesn’t look like she’s used to seeing him. I was especially glad for Landon because the last time he had come to see Benji didn’t turn out so well. They had gotten down here late Friday evening and about an hour after later Benji had to be moved back to PICU for his second round of respiratory failure. By 6:00 the next morning he had to be re-intubated so the kids never got to interact with him. They had just come to the door of his room and waved at each other.

It’s amazing what a good night of sleep can do and Sunday and today Benji was more like himself than I’ve seen him for a long time. He was interacting on a normal level (as well as one can when they are so sick and too weak to do more than whisper) and frequently made us laugh with his comments. One that we’ve told several times over is how when Cory went to tell him goodbye on Sunday afternoon, he commented to Benji that he’ll be back down here when that liver comes. Benji’s response was, “As long as you’re not the one doing the procedure!” ☺

Benji was all excited about seeing his cousins this weekend; both the Troyers and the Yoders and he decided he wanted to watch a movie with the kids last evening. Well, once Benji’s night time “stuff” all got finished he was very tired so they didn’t watch much more than about 45 minutes. However, today they were able to finish it together in Benji’s room. Just the three of them in there, doing something normal like watching a movie. My heart rejoices with Benji for being able to spend some time with his cousin-friends.

Though Benji had such a good day on Sunday, I believe he may have been a bit overstimulated by last night because when it came time to actually settle down and sleep, he had a bit of a panic attack and was rather weepy. It made me quite nervous that he would be this way all night long again, but after they gave him something to help calm him down he was able to relax and get a good night’s sleep. PTL!!! One precious but heart-breaking thing that happened last night while he was in his rather weepy state was when he brokenly, in his whispery voice told me, “I….can’t…tell you…how grateful…I…am…to you…and Dad…for….putting…up…with me!” My heart broke and I of course told him how there is no way we were “putting up” with him”; that there was no where we’d rather be than there with him. He wasn’t quite convinced but didn’t keep pushing the point. I assume it’s only natural to struggle with that, but bless his heart, I wish he didn’t have to carry that burden. Another very sweet thing he did last night was to wake me, around 3:00 a.m. (when I had fallen asleep sitting on a chair beside his bed) to tell me I didn’t need to sit there and could go over and sleep on the chairbed. He is such a sweet, patient, considerate kid and last night he was especially demonstrative of that. A couple of the nurses told us today that he is so different than the typical 15 year old kid who comes in there and is mad at the world for having to be there. I am so pleased that he is allowing the light of Jesus to shine through his countenance!

Today we had a special time of asking God to heal Benji’s body. On Sunday evening, after everyone else had left, my sister Rose, her husband Jason and three of their children (Malaina, Jalen and Micah) arrived with Topper and Marilyn Knepp. We have been wanting to have Benji anointed but the timing never seemed right; so since my brother-in-law Jason is a licensed pastor, we asked him if he would want to do this. After Jason and all were on their way down, we discovered that our interim part-time pastor, Walt was also planning to come down on Sunday evening along with our youth pastor Merlin Miller. So, this afternoon about 1:00, 12 of us gathered in Benji’s little cubicle of a room and shared in a short but very special time of again asking for God’s healing touch on Benji. Walt read a passage of scripture regarding God’s unfathomable love for us then Jason anointed Benji with oil (by rubbing some on Benji’s forehead while speaking to him and praying for him). After this, a number of us others joined in by praying for Benji’s healing. If you’re not familiar with the practice of anointing, it comes from a scripture passage in the New Testament, in the book of James, chapter 3 ~

13 Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises. 14 Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. 15 Such a prayer offered in faith will heal the sick, and the Lord will make you well. And if you have committed any sins, you will be forgiven.

This is something I also found regarding the purpose for anointing with oil as well, “The ceremony of ‘anointing with Holy Oil’ means to make Sacred, to consecrate or to set apart, and dedicate it for use unto our CREATOR.” We are dedicating Benji for the use of our CREATOR, but at the same time we believe God, through the Bible, asks us to do this when we are sick…so we did. ☺ We continue asking for God’s will to be done in Benji’s life but are at the same time asking God to heal his body and provide a matching liver for him.

At this point Benji is still stable and though some of his lab results vary quite a bit from day to day, they seem to have been able to keep most of his levels under control. However, barring a miraculous healing of his current liver, he needs a new one to heal badly and in a timely manner. Please continue to pray for his ability to remain stable until transplant and that a liver/pancreas would become available in a timely manner.

Praying for another good day and a liver…
Until next time……

Oh, and a special happy birthday wish to our son Tyler who turned 20 years old today! Love you hon...

Saturday, February 23, 2013

Yesterday I spoke about how Thursday night must have been quite emotionally draining on Allen. After last night, I’m guessing it was even more than I knew. I’ve never needed to do this before, but by 5:00 this morning, I called Allen and told him I need a break as soon as he can get here. We had been loosely doing 24 hour shifts, but after last night I told him that as long as Benji continues like this, I think we’ll need to go to 8 hour shifts. There is just no way to describe to you what it is that is so emotionally draining, but believe me, it is! He needs constant attention through these times, not because he physically needs something, but because he can’t shut his mind down and it just goes constantly. If Benji slept at all last night, it was only a very surface sleep and the whole time he’d be talking to “whomever” and at times motioning and reaching for things as well. His hyper-alertness had continued through the night, but it seemed that after he had been given some medication to help him relax, the hallucinations or whatever was causing him to reach for things may have gotten worse. Fortunately, Allen had gotten some sleep so by 6:00 he came to relieve me and I went home to sleep for a while. At 2:00, I went back to relieve him again so he could come back and sleep.

By midafternoon we did begin to see some improvement in Benji’s mental condition, though he still hadn’t slept. When I first returned around 2:00 this afternoon, the first thing he told me in his halting whisper was that he was thinking that maybe tomorrow they’d let him out for an hour or two and we could all go see a movie. That really touched me and made me sad. Obviously that wasn’t possible and I was surprised he wasn’t aware enough to know that. There were some other comments he made during this period (when he was often totally lucid but at other times somewhat confused) that were humorous enough we wrote them down. We imagine that he’ll get a good laugh out of them as well, in a few weeks from now when his mind will hopefully be back to normal. ☺

To our delight, his mental status seemed to improve throughout the afternoon and into the evening. It may have taken that long for the “relaxation” medication to wear out of his system but slowly most of the confusion seemed to leave him and by the time we had my birthday party this evening around 7:30 the confusion seemed to have worn off completely. By this time he was almost acting as if he was on speed; quite hyper and talking a lot but he was obviously enjoying himself. He was smiling some, laughing and making wise-cracks like I don’t know if I’ve seen since we’re here. He also actually enjoyed having a bit of the shrimp cocktail and really enjoyed the sherbet punch; and he was certainly enjoying having his brothers here! It was sooo fun for us all to see. The only thing that would have made this birthday celebration perfect was if Aaron could have been here as well. ☺

After the party he asked Cory to lie in bed beside him and watch a movie (and he’s not been interested in having anyone in his bed for quite a while- too many tubes and wires to yank out). Our nurse this evening was great and figured out a way to get one side clear enough to allow Cory to lie beside him, which he did. However, we were glad to see that just as speed wears off, it seemed like it suddenly wore off for him as well and he became quite sleepy. So sleepy in fact, that when Tyler and Cory told him bye for the night, he never even responded. We are so hoping this means he can sleep!

The team this morning decided that they think Benji has what they call ICU psychosis. This is not an actual psychosis, but is a phenomenon that occurs when people have been in ICU for extended periods of time. If any of you have ever spent any time in the hospital, you know how difficult it is to get any sleep there; ICU is ten times worse! It’s really difficult to get into a day/night routine when your days and nights are all treated the same. You get to a point where you lose so much sleep that you’re tired all the time. You then want to sleep during the day, whenever you get a chance. This becomes a vicious cycle and at some point you no longer have any day/night schedule. So, it was decided the lights would stay on brightly in his room all day and they would try to keep him as active as possible during the day to help tire him out. They actually got him onto his feet three times today and they said he really seemed quite strong (considering). We hung a dark sheet and blanket in his room to help block out the light from the hallway and the nurses are trying to consolidate his care as much as possible during the night, so there’s not someone constantly in the room doing something to/with him. We are praying all of this helps!

Uncle Sylvan is again staying with Benji tonight; however, Allen is staying as well because Sylvan understandably feels more comfortable if one of us is there while Benji is in this condition. Hopefully it will work for them to take turns; while one takes care of Benji’s needs for a while, the other one can get some sleep. (We were so happy to have just heard from Sylvan that Benji has been sleeping for an hour and a half!!!! Thank you Jesus!!! This is the most he’s slept in two days so maybe this has done the trick. We were also glad to hear Allen is sleeping as well. We pray tonight will be so much better than the previous two nights!)

I’m going to sign off now so I can get some sleep but I just want to express our gratitude to God for the opportunity to have this good time with Benji tonight!

Until next time….

Friday, February 22, 2013

Last night was a difficult night for both Benji and Allen. Benji is still struggling with sleeping but Allen notice a marked change in his mental state last night as well which continued all day today. I guess the best way to describe it is that his thoughts are sometimes jumbled and he fairly frequently acts as if he’s just woken up from a dream; like when someone asks you a question in the middle of a deep sleep and you can’t quite put your thoughts together to form a sentence. It’s also not unusual for him to think someone said something when they didn’t and he will frequently start to say something then shake his head and say never mind; his mind however is still very sharp. It’s also easy to orient him when he does get confused and he will usually try to orient himself; he knows he’s getting mixed up and tries to put his thoughts together correctly. It is really frustrating for him because he is very aware that he sometimes gets confused. This effect on the mind is a definite symptom of advanced liver failure.

I can’t tell you how difficult it is to see your child waste away in front of your eyes; it is such an incredibly helpless and painful feeling. At least we still currently have the hope of receiving a new liver, though that could change at any time if his condition gets too severe. Though we were told about the difficulty in waiting for an organ, we never had to experience that with his lungs; we now know, feel and understand the anxiety that comes with waiting for an organ while your child is getting closer and closer to death. Again, we just ask that in Jesus’ name he keep Benji well until that liver comes and then allow him to enjoy those new lungs here on earth.

Allen’s text to me this morning, telling me how the night went said that they gave Benji some Benadryl last evening which may have been the cause for Benji’s mind becoming more confused. By this morning he thought it had improved some but as I said earlier the confusion was very evident all day. A couple of things Allen mentioned that happened last night were that at one point Benji said he was dreaming that on Facebook he saw all his friends in a circle and he missed them so much. Another time he said he wasn't ready to die. Nights like last night can be very emotionally exhausting for us and I think last night was one of those for Allen. I hope he’s able to rest well tonight! One thing about FB- it has been a WONDERFUL tool to keep people updated and gather prayer support for Benji, and the encouraging comments from people have been SO helpful; however, just a couple minutes ago I recommended to Benji that he not go on FB anymore. I told him I would read the messages to him but it has become obvious that every time he goes on there and sees what his friends and family are doing, he realizes what he’s missing and it makes being here alone so much more difficult! So, even though we will continue to encourage him NOT to get on, continue to send your messages and well wishes to him, and we will be sure to read them to him. ☺

One thing I noticed today was that while in a way Benji seems sicker, he also seemed more talkative and seemed to engage more with people than he normally does. In fact, he even smiled slightly when Dr. John came in the room and told him they never did arm wrestle last week like he’d wanted to and asked him when they could do it. You couldn’t ask for a sweeter kid but getting a smile out of Benji when he feels like this is quite a feat, so it was quite gratifying to see that! (Bravo Dr. John!) Benji also seemed to be a bit hyper-alert, noticing and hearing every little thing (even things that didn’t happen). Anytime he noticed a group of people outside his door he immediately wanted to know what was happening and seemed concerned that it may have something to do with him. If he saw a doctor or nurse speaking specifically to us he always wanted to know what was going on. It displayed a type of anxiousness that I don’t typically see in him. On the other hand he is still peaceful and calm most of the time.

Many of you know my birthday is today and in fact, it’s my 50th. Not exactly the way I would have hoped to spend this day but we will have plenty of time to celebrate later. Despite how sick Benji is, he is still the sweet, caring kid he’s always been and he showed that in regards to my birthday. This is something I posted on FB today.
“My dear, sweet son, who is SO sick and is too weak to speak with more than a whisper, has celebrating my birthday foremost on his mind! When it was first mentioned a couple days ago, his eyes flew open and he whispered that we should celebrate by bringing shrimp cocktail into the room. Today, the minute he opened his eyes and saw me in the room, he said something to me I couldn't understand so I leaned forward to hear him whisper, "I say we also get some lime or raspberry sherbet and ginger ale to make some punch." (For the "party") :') I am honored to be blessed with him as well as three other thoughtful, caring sons! Thank you Jesus for entrusting each one of these special boys to our care!” This was precious to me!

**And, just about the time I was finishing writing this, at about exactly midnight, two more of our special sons shocked me by showing up at the door of Benji’s room; having just gotten here with Sylvan and Connie. It was an awesome birthday present and Benji knew they were coming but didn’t say a peep- great to see you Tyler and Cory! (Aaron wasn’t able to make it this weekend because he’s on staff at Bible Memory Camp. Looking forward to seeing him in the near future when that liver and pancreas come! )

Allen and I had a meeting this afternoon with a number of the doctors who regularly work with Benji. It was billed as a routine weekly meeting (which they try to do regularly to make sure we’re all on the same page; however, last week it got missed). I think because of the decline in Benji’s mental status that Allen and I saw today, we were both somewhat dreading the meeting. We feared what they were going to tell us. However, we were actually encouraged from the meeting and we were told that they still consider Benji to be stable and so far, they’ve been able to keep the problems under control. The best news they gave us was that his status has not changed regarding transplant. This is something we are constantly concerned about- (as are they), especially when we notice Benji getting worse; knowing that at any time they could say they think he’s just too sick to proceed. Another thing they told us was that the what we are seeing right now is very common in children waiting for a liver transplant and that the situation isn’t necessarily static; meaning it can be worse one day and better the next. Some of the biggest concerns we have regarding him getting too sick to do transplant are his clotting factors, blood pressure and infection. If his blood pressure gets to the point of needing too much assistance, or if his blood isn’t clotting well, it makes surgery too risky and if he gets infection in his blood they don’t see it as worth going through the surgery because he probably wouldn’t be able to fight off the infection once it’s in his blood. These are some definite things to continue praying for!

Towards the end of the meeting, one of the doctors said something that blessed us greatly. I had just tearfully (again), expressed our gratitude for the way they are all fighting for Benji’s life and for advocating for him the way they have. One of the doctors, who tends to be more on the stoic side, spoke up in a very tender manner (while appearing to fight back his own tears) and said we shouldn’t discount our part in their advocating for Benji; that because of how we have handled things it has made it easy for them to do so. He referred to something about our faith and the stability of mine and Allen’s relationship and Benji’s home life (which includes a broad support system). He then went on to say that they have seen many, many people in our situation and most (he emphasized “most”), of them respond VERY differently than we have. “Together we make a good team,” he said (referring to the medical team and Benji’s personal team- which really includes not only Allen and I, but our other boys, extended families, friends and all of you who are lifting us up in prayer; your encouragement and intercession for us are what give us the strength to not fall apart.) Sometime I’d like to ask him more about the difference he sees between our responses and the way others respond; I’m really curious to know what that looks like. Though I cannot tell you any specifics about what he was referring to, I CAN tell you I don’t think there could be anything more gratifying than to hear that we are indeed being a light for Jesus here! Because of God’s working in our lives, we have been able to respond in a way that is glorifying to God and different from those without Christ! What an honor and a privilege to be in this situation where God can use us in this way! We thank you Jesus for being our comforter, our guide and our strength!

This morning was another one of those times when I struggled with discouragement and fear. After receiving Allen’s text and hearing the discouragement he expressed in some of it regarding what he was seeing in Benji, I again began crying out to God; asking him to please heal Benji and asking why. Why does Benji have to suffer this way? Why can’t he just have mercy on him and give him a break!? I also began to be fearful for Benji’s future. I began to wonder what the use is to pray. Have we gotten to the point where God has already decided Benji’s fate so therefore, it’s really not worth praying anymore? Does God get tired of hearing us ask for the same things over and over?

About that time, I was feeling the most fearful, the song “Be still my Soul” began playing on Pandora. These are the words that spoke directly to me:

Be still, my soul; the Lord is on thy side
Bear patiently the cross of grief or pain
Leave to thy God to order and provide
In every change He faithful will remain
Be still, my soul; thy best, thy heavenly, Friend
Through thorny ways leads to a joyful end

Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.

Be still, my soul, though dearest friends depart
And all is darkened in the vale of tears;
Then shalt thou better know His love, His heart,
Who comes to soothe thy sorrows and thy fears.
Be still, my soul; thy Jesus can repay
From His own fullness all He takes away.

This was just one of the things I believe God used to speak directly to me today, within an hour and a half; drawing my thoughts to focus on God and calming my fears and questions. Following are the others:

I received a text from my brother this morning who sent a link for the following song:

In the Waiting~

I’ve seen the red sea part, I’ve seen the mountains move
But now it seems so dark, I can’t even feel You
If You chose to be silent I’ll be silent too
I will worship in the waiting, quiet before You

Until Your voice like manna from the sky falls
I will worship in the waiting
I will walk with this sand beneath my feet
Though the winter wind is blowing

The ground is not frozen underneath
I will worship and not grow bitter
'Cause I know You see the end of it all
And with the spring will come the rain
And I'll see what was gained

In the waiting
I’ve seen the blooms of spring, new life in everything
But now it seems so grey, bright colors fade away
This winter seems much longer and colder than before
But I will worship in the waiting, expecting something more
Until the sun shines warm upon my face again

He Leadeth me, He leadeth me
By His own hand, He leadeth me
His faithful follower I would be
For by His hand, He leadeth me

And again, God used Pandora to speak to me with this song:

Today is the Day~

I'm casting my cares aside
I'm leaving my past behind
I'm setting my heart and mind on You Jesus

I'm reaching my hand to Yours
Believing there’s so much more
Knowing that all You have in store for me is good
Is good

Chorus:
Today is the day You have made
I will rejoice and be glad in it
Today is the day You have made
I will rejoice and be glad in it
And I won't worry about tomorrow
I'm trusting in what You say
Today is the day

I putting my fears aside
I'm leaving my doubts behind
I'm giving my hopes and dreams to You
Jesus

I'm reaching my hand to Yours
Believing there's so much more
Knowing that all You have in store for me is good
Is good

And remember I said I was struggling with wondering if it’s worth it to keep on praying? I received the following message from a friend:
“... guess what I read-AMAZING... JUST FOR YOU: John 16:24-Keep on asking and you will receive, so that your gladness may be full and complete!”

And right shortly after receiving that text, I read the following in a book another friend sent me for my birthday. The book is called “Jesus is Calling- Enjoying peace in his presence”:

“Your inadequacy presents you with a continual choice – deep dependence on Me, or despair. The emptiness you feel within will be filled either with problems or My Presence. Make Me central in your consciousness by praying continually: simple, short prayers flowing out of the present moment. Use My Name liberally, to remind you of My Presence. Keep on asking and you will receive, so that your gladness may be full and complete.”

The passage for today ended with this verse:
John 16:24 “Up to this time you have not asked a [single] things in My Name [as presenting all that I am]; but now ask and KEEP ON ASKING and you will receive, so that your joy (gladness , delight) may be full and complete.” (Notice this is same as the verse in the text I received.)

Thank you Jesus for speaking so directly to me! You reminded me that if I focus on you and your faithfulness, my soul will be still. And as to whether or not we should continue asking, you answered that SO directly with your own words! So, I will continue asking and I believe that “we will receive” and that you will heal Benji so that our “joy, gladness, delight will be full and complete”…. But, we are putting our faith and trust in YOU- not in the outcome, but in YOU! I pray this also encourages all of you to preserver in prayer, even when we wonder if it’s worth it.

Until next time….

Thursday, February 21, 2013

One of the symptoms of advanced liver disease can be altered emotional and mental state and there’s a good chance this could be affecting Benji. It could also simply be that as would have happened to most of us long ago, things have caught up with him and, he’s had nearly all he can handle. Either way, he’s been struggling more with discouragement. Around 3:00 this morning, for some reason is all of a sudden hit him and we spent some time crying and praying together as he tearfully expressed his heart’s desire, “I just want to get out of here!” So heartbreaking! It’s not easy to see Benji go through all this, but it’s so much more difficult when we see him struggling with discouragement! We.Just.Want.To.Fix.It.For.Him! All we can continue to do is cry with him and share his pain and constantly remind him that God loves him, no matter what the circumstance, whether or not we understand the reasons why.

This morning, he again had another bout of struggling… (My heart just breaks thinking about it)! Soon after this though, as I was trying to figure out what was bringing this on at this time, it suddenly occurred to me that he had been on the laptop last evening and again this morning he had asked for it shortly before his second “bout”. I don’t know about last night, but the first thing he did this morning was go to FB and I had to wonder if being on there (something he hasn’t done for weeks), has caused him to be more homesick. When he sees what all his friends and families are doing it could actually be making it more difficult for him. On the other hand, after finding out he’d been on FB many friends, family and others sent him messages through his inbox or on his timeline and this has to be encouraging. I wish he could have gotten on and read those messages himself but he had tremors so badly this morning that he couldn’t control the mouse. As a result I read the messages to him and obviously, even if he had felt up to responding, he couldn’t have done so because there’s no way he can type when he has such severe tremors.

The tremors could be a result of several things. The first possibility is his advanced liver disease; tremors are a symptom of that and we believe much of it comes from that. It also seems that when he is on dialysis the tremors worsen and thirdly, he was on a med to help bring his blood pressure up; after that was lowered today his tremors definitely lessened. When the tremors are really bad, it’s impossible for him to hold a book still enough to be able to read or a spoon steady enough to feed himself something like a thin soup. That’s also something that’s difficult to watch.

Benji’s labs today again looked decent, certainly not worse and his white blood cell counts were thankfully down into the 20,000’s again. This is not as low as we’d like and it is not in the normal range but it’s better than it had been. Yesterday his ammonia levels had been up to 109 again so we were glad to see those back down in the 30’s again today. These are things that appear good; however, when Allen spoke to the lung transplant surgeon this evening, the surgeon expressed how urgent he believes it is for Benji to receive that liver. Upon hearing that, I panicked and again sent out an urgent prayer request. I was getting ready to repeat it here; yet, as I was writing this, it just seemed like I again needed to take a breath and rest in God’s perfect timing. Yes, we are asking you to continue to intercede on Benji’s behalf and ask that God show him mercy and bring that liver/pancreas quickly; however, I am again choosing to place Benji and this entire situation into God’s hands and trust him with the details. He has so obviously had his hand on this entire process over the last 3 months; and he appears to have used some of our more difficult moments to bring about his purposes later on. He certainly has shown us many times over how much he loves and cares for each one of us.

“So Lord, tonight I am again placing Benji and this whole situation into your hands. Our heart’s desire is that you please be merciful to him once again and remove him from this agony by providing him with the perfect liver and pancreas; however God, I am again trusting you to accomplish your perfect will in Benji’s life and to work all things out for your glory and for Benji’s and our good. I am continuing to believe that you have brought him this far because you still have a plan for his life here on earth. But.... (Heart skipping-a-beat)….I am choosing to praise and honor you no matter what the outcome. Thank you for your AMAZING love and for the many blessings and mercies we have been given- all so undeservedly!” And as Chaplain Lew would say, “In Jesus naaame….A - Men!”

Until next time…..

Wednesday, February 20, 2013

I’m sorry I was too exhausted to write last evening, but Monday night was a really tough night and I got very little sleep. Sunday was a great day and Sunday night was good; both Benji and Allen slept very well. He began the day on Monday, looking better than he had last week but not as good as he did on Sunday. However, by Monday evening he was beginning to revert to the way he had been prior to starting dialysis; more restless and beginning to complain of back pain.

Late Monday night, I got quite concerned when I discovered that Benji’s fluid intake was over a liter positive. (This means he had taken in over a liter more than he had put out that day). Positive output was the main reason he had previously gone into respiratory failure and it has been a real balancing act of keeping him wet enough for his kidneys to stay happy, and dry enough for his lungs. For the last several weeks they have tried to keep him negative (which was why his fluids were so restricted) and though they didn’t try to keep him negative after going on dialysis, they did try to keep him evenly balanced. (The nice part about being on dialysis was that the machine could take off excess fluids so he was able to drink more). The reason he wasn’t having any output on Monday was because they had removed the dialysis machine on Sunday morning and Monday morning they had removed his catheter. While on dialysis his urine output had been great, but soon after taking him off, it really declined and after removing the catheter on Monday, it went down to nothing. (Allen and I weren’t too excited about removing the catheter because we were concerned he’d have to have it later and didn’t want Benji to have to go through reinserting it again; however, we also understood that having it in increased his chances for another infection.)

The “fellow” (a fellow is doctor in training in a special field) that was on staff Monday night had never had Benji and while she knew some about his case, it’s hard for anyone to know all the ins and outs of his particular case if you haven’t worked with him. When I asked the nurse what they were planning to do to get the fluid off of Benji, he said the doctor was fine with giving him the regular dose of diuretics and then give it 12 hours before doing anything more. I’m guessing the doctor’s answer was the typical way they would treat something like this but, as we’ve been told numerous times, “Benji is no ordinary case!”☺ At first I was a bit concerned and made sure he was getting the max amount of diuretic he could get, but I became VERY concerned when I heard a slight rattle in his breathing and the nurse said his lungs sounded courser than they had previously. I immediately went out to speak to the doctor and asked her how familiar she was with his case and gave her a brief overview. I told her that though I’m not a doctor, based on Benji’s history over the past seven weeks, I didn’t think we could wait 12 hours to get on top of this. Things had changed so quickly the previous two times (when his lungs had filled with fluid); it had all gotten bad within a couple hours’ time. This doctor was extremely kind, easy to talk to and was quick to hear my concerns (as are nearly all of the doctors here; we really feel like they include us as part of the “team”.) I told her if it’s okay I would like to cath him now and add the second diuretic to assist in getting the fluids off; the one they had added the last time he had gone into respiratory failure. She looked it up to see what the diuretic was and ordered it as well as ordering the cath. Though I was concerned all night about what might happen, I did feel more at ease after having these things done. Thank the Lord, whether because of doing these things or not, it never got to a critical point that night, even though by morning, he still hadn’t gotten rid of nearly enough fluids.

Because of all this fluid stuff, and by the time Benji was cathed and all, it was around 3:00 a.m. and by then Benji couldn’t sleep. I read to him for a while but he was becoming more and more restless. By early morning, he was back to how he had been last week, before being put on dialysis, when he was so ridiculously restless and couldn’t sleep. Once again, he wanted to sit up; a few minutes later he wanted to lie back down, and then sit up; then his back began to hurt and he wanted to have that rubbed, then his feet rubbed, now sit back up. I can’t describe how exhausting it is when he’s restless like this; he constantly needs something and he just.can’t.get.comfortable! (These are all symptoms of end stage liver disease and it is SO NOT Benji!) I was so glad when around 8:00 that morning I was informed they were going to put him back on dialysis; I was not only glad because of the fluid problem, but also because of how much better Benji had been after beginning dialysis last week-( in regards to his overall comfort and restlessness- or lack of it.) By around 10:30 yesterday morning (Tuesday) they began getting him set up for dialysis again and by midafternoon, the restlessness was beginning to subside and by last night he again had a calm night and was able to sleep. As I sit her writing, I can hear his peaceful, deep breathing as he sleeps calmly and it is music to my ears! (Point of interest: I’m not sure if I’ve explained this before, but he’s not getting dialysis a couple times a week as we normally think of someone getting dialysis; his is running continuously.)

Despite the hard night we had on Monday night, his lab tests Tuesday morning were nearly all improved or stable, except for his BUN (which reflects kidney function) and white blood cell counts. However, I would agree with the doctor who said this morning that his numbers make him appear in better shape than what he looks like clinically. I didn’t think he looked so good when I came in this morning, though he did have a really rough morning.

I can’t even begin to describe to you all the things this kid had done to him today and all the activity in the room, starting at 6:00 this morning! From then until about 4:00 this afternoon, he had people working over, on or with him CONSTANTLY. It began with his dialysis machine again clogging up and the filter needing to be changed and that is not a simple process! Along with that his blood pressure began to drop and they couldn’t get it to come back up. Doctors and others were coming in and out of the room and they tried numerous things to bring it back up but nothing seemed to work. They finally decided the sensor in the arterial line was not working properly (one of the purposes of the arterial line is to get a more accurate blood pressure reading) plus they were no longer able to draw blood out of it, so they decided they needed to put in a new one. His port needle also needed to be changed which meant the thing he hates the most -needles, he had to deal with twice today. Respiratory came in to do a treatment. Physical therapy came in. His left chest tube site was leaking so badly that they had to change the dressing several times within a few hours and had to change his gown three times. His bedding also got soaked which they had to change. Surgery needed to be called to come check it out, to see if there’s something that can be done to slow down the leaking. Because his ammonia level was over 100 this morning, they gave him an extra dose of the Lactulose (a laxative), which caused him to frequently need to go to the bathroom. This doesn’t begin to give you the full picture nor does it list everything, but it was exhausting for me to watch and I figured by this afternoon he would be pooped and ready to sleep!

I was surprised when by late this afternoon he seemed to look a bit better and he shocked me when he asked for his laptop! I was delighted he was interested in that but I’m not sure how long he stayed on it because Mom came shortly after that and stayed with Benji while Allen and I had a night out with Gene and Brenda Troyer who drove down today.☺ It was really nice to get out for several hours; just the two of us, and spend an evening talking with some good friends! Thanks Mom, for giving us that opportunity!

Of course, we’re always aware that when we go out to dinner (or any time), we might get “the call”; however, it is a bit different this time than it was with the lung transplant. With lungs, there is a short window of time within which to get the lungs into the recipient. In fact, for the lung transplant, they had told us they’d like us here within ½ hour after getting the call. For a liver, there is a much longer time frame they can work within- up to 24 hours. The liver transplant coordinator told me today, that to be listed for a liver, you don’t even have to relocate. If you live more than 6 to 7 hours away, they just set you up with a medical flight to get you here. The pancreas time is in between these two; there is about an 8 hour window with it. Either way, whether we get the pancreas with the liver or not (which we hope we do), it may give the other boys at home enough time to get here, so they can be here before he goes into surgery. We were told the surgery itself should take 6 to 8 hours. Of course, the fact that I had been told “5 minutes to a couple days” last Friday night has made waiting six days seem like an eternity; however, we continue to pray that it be within God’s timing and evidently it hasn’t been his time yet. We are trusting that he knows exactly what Benji needs and will provide it and we are SO grateful that Benji has stabilized enough that he should be able to make it till transplant.

One other thing the liver transplant coordinator told me today was that everything was now totally in place and all the logistics worked out. She said there were even a few things that were still ironed out the first of this week. The most interesting thing she told me though was that the insurance approval had been the smoothest and easiest thing to work through, when that is usually the most difficult. Again, I think this is because of the insurance fiasco we went through, just before we moved here. Of course God knew all along how helpful that would be to Benji later on down the road. Once again, we are grateful for the blessings he continues to generously pour out on us!

Again, we ask you to pray with us, asking God for that “perfect” liver and pancreas, that we remain patient, that the surgery be successful and that God will again be honored through the process. We pray that we can, “Remain joyful in hope, patient in affliction, and faithful in prayer.” Romans 12:12

Until next time….

Tuesday, February 19, 2013 9:05 PM CST

If you came looking for Tuesday's update, I'm sorry, I won't get it up till tomorrow; just too tired. I'll just say though, that though Benji is fairly stable, he had to go back on dialysis today. We're also still waiting on that liver and pancreas. :)

Monday, February 18, 2013 7:06 PM CST

This is definitely a one-page day; there’s very little going on. Most of Benji's lab tests this morning were either improved or normal. PTL! Two numbers that weren't were his BUN, which reflects how the kidney is functioning and his blood sugars. We are a bit concerned that taking him off the dialysis machine might set him back but they want to keep as few things inserted into his body as possible since each one increases the possibility of getting an infection. Also, for some reason (which no one understands), Benji's blood sugars have been extremely high today. Up until now, I've not really made a big deal about his pancreas and have focused more on the liver because that is the most important thing right now. (In fact, if by any chance there is a suitable liver available, but not a pancreas, they will go ahead and do the liver anyway because he needs it so badly.) Especially because of his high sugar levels, I would like to ask you to specifically pray that he could receive a pancreas as well as a liver. It would be so wonderful if he wouldn't have to have diabetes or take oral enzymes!

It's been a very quiet day and Allen said Benji slept very well last night. Benji is never real talkative, but Allen and I both felt he was quieter today and sensed something different in him; neither of us can figure out why we feel this way. I tried to ask Benji about it, but as usual, he had little to say. To each of my questions of whether he's scared or anxious about the liver transplant, he shook his head no; and to my question if he just wants to get it over with , he nodded his head yes. I also asked him if he's just sick and tired of all this and he nodded yes to that as well. Poor guy! My heart just breaks for what he has to go through. I talked to him again about why he has to go through all this and as I heard in a sermon yesterday, I told him "it's not about "the why", it's about "the Who". We will probably never know or understand "the why", but we do know "the Who". And we know "the Who" loves us more than we could ever imagine and only wants what's best for us; our job is to trust him and bring glory to "the Who", in everything we do. God has never promised us the why, but he has promised to always be with us and carry us through. Please pray for Benji as he continues on this difficult journey; pray for strength, endurance and peace.

Tonight, there was a meal fixed at the apartment for the first time since moving here; thanks to my mom! Bless you mother. Also, Dad decided the timing wasn’t good for him to leave now, so he canceled his flight for today without re-scheduling for now. I guess his plans did get messed up, but not in the way we hoped. ☺

For some reason Allen and I are both feeling a little anxious tonight; neither of us is sure why. We will need to wash our minds with scripture and focus on God to rid us of our anxieties, but maybe those anxieties are a sense of something more coming tonight.... we would LOVE that! Continue though, to pray for God’s perfect timing in all this!

We love you all and I want you all to know we so appreciate ALL the cards, letters and gifts you have showered on us!! It’s been incredible and we will certainly be paying forward in the same way you all have blessed us! Also, I so appreciate all the messages! However, sometimes it’s about all I can do to keep up with the daily journal update and I just don’t always have time to respond. So, if you do message me, please don’t take it personally if I can’t get back to you right away! You can be assured though, that you have blessed us a ton!

Until next time….. (and hopefully after Benji has received a new liver and pancreas! ☺

Sunday, February 17, 2013 9:27 PM CST

Allen and I are currently sitting in Benji’s hospital room with my mom and dad, while Benji sleeps. It is so good to see him sleep peacefully and deeply. For the last one to two weeks he has had difficulty sleeping for any lengths of time; he has been so restless and uncomfortable. His back pain contributed to that but his restlessness (which we can’t explain) seemed to be as much a part of it as the pain.

Early yesterday morning Allen and the boys, Sylvan and Connie and my brother Jim came down. (It was so good to see them all, but it was REALLY good to have Allen back!) Jim had gone back home with Allen on Tuesday and left Shirley here with me; he came back down again to drive home with her. Benji had definitely improved some yesterday and was able to appreciate when his brothers came. Last evening he even asked to eat! He ate a popsicle and still wanted some potato soup; so Uncle Sylvan found a place that sold some and ran after it. Unfortunately, it wasn’t the kind of potato soup he liked (i.e. thick and chunky), but Sylvan had thought to get some chicken noodle soup as well. Benji tried that and liked it and managed to get down about six bites. It’s crazy how little things like this have become such exciting events!

Last evening, after giving each of the boys a haircut (some MUCH needed!☺), Jim, Shirley, Mom, Dad, Allen, the boys and I all went out to dinner. It was nice to have most of us together but we CAN’T WAIT until Benji can be with us! While we were out, Sylvan and Connie stayed with Benji; after supper we came back to tell Benji goodnight and took Connie along back to the apartment while Sylvan stayed with Benji again for the night.

Today, Benji looked even better than yesterday! I can’t begin to tell you how it lightens our spirits to walk into the room and see Benji looking alert, bright-eyed and peaceful! When I walked into the room today, I was delighted to see him SITTING UP IN A CHAIR! He hasn’t done that for a week and it’s definitely a sign that he’s feeling better! This was my FB post earlier today:
Benji looks a-MAzing today. This is the best I've seen him look in more than a week. Took him off dialysis & ordered it only as needed. Sat up in a chair for 35 min. Labs & white blood cell count improved. We're told improvement doesn’t take him down on the list! PTL this may allow him a little time to get a bit stronger. PRAISE YOU JESUS!!

We all took turns hanging out in the room with him today; those that weren’t with him hung out down in the WONDERFUL Ronald McDonald House family room here in the hospital. That has been such a haven to hang out in; it has a nice big living area and a small kitchen with an area to eat. They also have a couple washers and dryers that are available to use for free and a couple bathrooms with showers. This place is so much homier than the hospital lounges and I love being able to eat my meals there on a real plate with real silverware.

Jim & Shirley left for home early this afternoon; it was such a blessing having Shirley here this week while Allen was gone; for me, she provided sleep support (staying with Benji sometimes so I could sleep), emotional support, cleaning and laundry support and even massages and foot rubs. For Benji, she provided amazing comfort through her foot, head and leg rubs and other loving touches and by helping him in any way she could. Bless you Shirley for your acts of service! Thank you also Jim and Megan for sacrificing your wife and mother for a week!

Later this afternoon Sylvan, Connie and the boys left for home; they waited as long as they could, hoping “the call” would come before they left. We are trusting God to also provide, in HIS time, a “perfect liver and pancreas” for Benji as he did his lungs; so despite the fact that we thought we wanted to see it quickly, it may possibly be better in the long run if it doesn’t happen so quickly, allowing Benji to get a bit stronger before transplant. The doctor again this morning told Allen that he expects it to be less than a week, so we’re still expecting it will come any day.

Though we will never be able to understand God’s purposes in all of this (nor do we need to), we have thought of several possibilities as to why we have experienced all these setbacks and disappointments. We were hoping to bring Benji down here, get his new lungs, spend a few weeks in the hospital and three months later move back home, hoping and praying that Benji wouldn’t be one of the 50 percent of lung transplant recipients who develop the new lung disease that takes their lives in less than five years. This new lung disease is something they are still studying and trying to understand what causes it in some people and not in others. Sometime over the last couple weeks one of the lung transplant team members told me that there have been seven lung/liver transplants done here; and while I’m not sure what happened with the one, none of the other six have developed the new lung disease (called bronchiolitis obliterans, or BO for short) and all of them have passed the five year mark and are doing very well. There is one difference here; each of the six had received single donor organs and Benji’s will be from different donors. However, when I asked a couple different ones of both the lung and liver transplant teams if they think the liver may play a part in whether or not lung transplant recipients develop BO, they all said it is a good possibility and it’s being looked into. Maybe this is a way for Benji to avoid getting BO down the road, and ironically, he most likely wouldn’t have been listed for liver transplant years from now, because of the low expectations for living longer than five years.

Secondly, it may be possible that other lung transplant recipients may benefit from his experience. I have been told by two individual from the lung transplant team that they have made changes here as a result of Benji’s situation; one said they’ve actually changed their policy. My mom ran into the mother of a child who is waiting for a lung transplant and who has recently moved into the RMHC apartment across the hall from us. She was telling Mom how they had been so frustrated because shortly after they had already moved here for a lung transplant (which was about two to three weeks ago), they were told their daughter was going to need to be taken off the list until after they did a liver biopsy. Depending on the results of that biopsy, she would have had to be listed for a lung AND liver transplant. Fortunately, her liver biopsy came back okay, so they re-listed her for lung transplant. It’s obvious to us why that happened and exciting to think that another child may not need to go through what Benji had to because of what they are learning from his experience. Also, it may help them get a better understanding IF the liver plays a part in developing BO.

Another thing we have become aware of puts a whole different light on the insurance fiasco we went through just before moving down here. Because of that whole experience, which seemed nightmarish at the time, Benji’s name became known to a lot of people, including upper management within Indiana Medicaid. (If you aren’t familiar with what I’m talking about, you can read my journal update from December 23). We really weren’t sure how IM would respond to the liver transplant idea, especially since the surgery will be done at a different hospital and we were concerned there would end up being a lot of red tape and hassle trying to get it approved. We didn't know, but we hoped that our earlier experience might help with that. Earlier this week Dr. Krippen, who I’ve been told is the head honcho of the liver department at Barnes Jewish Hospital, came in to tell me that he had spoken to the head of IM and they were on board and okay with everything. A couple days ago, another doctor told me that they had been so surprised because when Dr. Krippen called to speak to the head of IM, he (Dr. Krippen) referred to Benji as “Mr. Eash” (which is how they typically do) and was shocked when the response was, “Oh, you mean Benji?”☺ She said they couldn’t believe IM knew about Benji; (and I’m sure they were even more surprised that highest management there knew Benji by name!) Of course we don't know for sure if it made any difference in Benji's case, but we're sure it didn't hurt anything. Wow! Isn’t it so incredible how God works in ways we can’t even imagine?!

I’m just ready to leave to go back to the apartment for the night; Mom and Dad are already there. Tomorrow morning, Mom and I are planning to take Dad to the airport. He’s planning to fly back down to Florida to close up the house there then he and Dale will catch a ride home with someone else or take the bus. Mom will be staying here for as long as she’d like. Because dad had said he wanted to be here for the transplant, I had told him he might want to buy some insurance on his plane ticket in case he has to cancel. On Friday, Mom, Dad and I were talking to Lou (the chaplain here- whom we love); we were talking about how we’d like the transplant to happen quickly so he prayed that God would “mess up Harley's (Dad’s) plans”. ☺ So far, God hasn’t messed up his plans, but we still have about 11 hours to go. Lol

I’m again signing off with a light heart full of gratitude to an AWESOME, gracious and loving God. Thank you Lord for giving us new hope!

Until next time…..

Friday, February 15, 2013

We have a number of good reports today and we fortunately didn’t have any crisis moments, but we did have some drama! (Which means I doubt it will be a one or two page day.) ☺

• First the good news:
Benji was extubated first thing this morning- Yippee Skippee!! AND.... he was told he could drink AS MUCH AS HE WANTS!!!!! Thank you JESUS! I guess with the dialysis, they can remove any excess fluid he accumulates.
• His chest tube has been draining around 600 ml/24 hr. for quite a while. The reason for the pleurodesis on Wednesday was to help this. From 8:00 yesterday morning till 8:00 this morning, he only put out 264!!! This is so awesome! Drying that up could play a huge part in his healing and we just pray it continues to decline!
• He has had no back ache today! (We just really think all that back pain came from his kidney issues. I guess we’ll find out.)
• And, his white blood cell count is down.

One report from this morning was a little disappointing; his chest ex-ray looked a little worse because the pleural effusion had gotten a bit larger. (A pleural effusion is a pocket of fluid that has collected between the lungs and the chest cavity.)

The drama came when I got here, around 12:15, and I ended up learning about another medical issue we’ve never dealt with. I think by the time we get through this, I should get an honorary medical degree! ☺ Shirley had stayed with Benji for the night while I got a really good night’s sleep; thank you Shirley! She said Benji wasn’t restless or uncomfortable like he had been Sunday night when she had stayed at the hospital with me, but he seemed to be having a hard time sleeping. (Probably slept too much yesterday.) First thing this morning he was taken off the vent and immediately afterward, I’m told he was doing quite well. The best thing about his day was when at noon they told him he could drink all he wanted, which he took them up on, (until it began to affect some other things negatively and they had to cut back again; however, at least they never took away his ice chips, PTL!)

So when I got here, I immediately noticed something was not right with Benji. Shirley had also thought he seemed to be acting a bit differently but when she said something to the nurse, the nurse said she thought he was tired (which she also told me when I came in). In all the years of Benji’s hospitalizations and difficult times, I’ve NEVER seen him like this. He appeared to be zapped of any energy and was extremely lethargic. He was sitting up in his bed, leaning forward but seemed to not be able to quite comprehend when I spoke to him. Even when Grandma and Grandpa came into the room he didn’t really pick his head up to look at them which was VERY unusual. He could barely whisper and his eyes just had a faraway look in them. Sometimes if I would say something, he wouldn’t respond at all so I would gently push his shoulder to get his attention; usually, he would then respond in some way, but very lethargically. Once, soon after I came and was so trying to understand what was going on with him, I asked him what was going one. I picked up his chin and asked him to look at me and told him that something is different; he’s not the same and I really need him to talk to me. Are you feeling discouraged? Depressed? In pain? Uncomfortable? Does your brain feel fuzzy? To every question he would shake his head ever-so-slightly (just enough that I knew he was saying no.) My last question was, “Are you tired?” to which he made the hand gesture that means “kind of”. I figured he’d be quite tired because of lack of sleep, but I just knew there was something else going on. Every time I would try to communicate with Benji, I would again say something about it to the nurses. One time I asked the nurse what might cause a person to be this way; she couldn’t come up with anything.

It seemed to gradually get very slightly worse over the next couple hours and through all that time, I kept commenting about something being wrong. Finally, after a couple hours, the nurse said she could have the doctor come look at him and I said I would like that. The doctor came in and observed for a while and asked the nurses and me some questions then he asked them to test Benji’s blood gasses. He and the nurse also observed that Benji seemed to be working harder to breathe. To make a long story short, come to find out Benji had severe metabolic acidosis (that’s my new medical term) ☺; this means that Benji’s body pH was out of balance and his acid level was way too high. Also, his carbon dioxide levels were a slightly higher than they should be.

From the bit of research I’ve done on it since then and the questions I’ve asked, it appears that liver dysfunction will often cause the high acid levels and one of the symptoms is lethargy. Evidently, when you’re on dialysis, the machine will clear a lot of that, but if it’s a large amount it can’t keep up. I’ll say as best I can, in “our language”, what I understood them to say. While Benji was still vented, his body was able to keep up because it had one less thing to focus on; however, when he was extubated and had to begin breathing on his own, it overloaded his system and was more than his body could handle. This is called decompensation.

They believe the cause of the high acid levels comes from another cycle of trying to fix one thing and in the process upsetting something else. Because of how Benji’s blood is clotting, they are giving him citrate to keep from clogging up the dialysis machine. Citrate is an acid that thins the blood, but since his liver isn’t functioning properly, and the dialysis machine couldn’t clear all the acids he was getting, it began to build in his body. I found it interesting that the antidote is sodium bicarbonate, which in our language is- baking soda. ☺

It wasn’t long before other doctors, respiratory therapists, nurses, pharmacists, etc. all began to gather in and around the door of Benji’s room, discussing what was going on and what needed to be done. If I hadn’t been told what this was all about and seen that the doctors were not concerned about the long-term, I would have been shaken up. The amount of people that were coming to the door, gave it an appearance of being quite serious. I can’t begin to paint a picture of what it looks like at these times. The staff is hustling and bustling around the room and each one seems to know exactly what they need to be doing. Outside the door you see people, who seem to just suddenly show up, gathered in little groups, discussing what they’re seeing and trying to figure out what the next step might be, etc.; but despite the congested room and ability to become chaotic, you get the feeling you’re watching a well-oiled machine, where everyone knows exactly what their job is.

Because the room was filling up with medical personnel, Mom, Dad and I decided to go down to get something to eat while they got Benji set up. Again, I was grateful I already knew what was going on before we went down because I might have freaked out coming back to the room and seeing the amount of staff standing around the door; and on the inside of Benji’s teeny tiny room there were probably another 7. Benji had been put on the biPAP machine and he looked very much like he did the two times he was going into respiratory failure. A biPAP machine is a device used to assist with gas exchanges and it has a huge mask that is strapped to the head. The difference between now and the times he went into respiratory failure is that now his lungs are fine; in fact, when they periodically removed his mask to swab his mouth, his oxygen levels stayed high on their own. So, while he looked (and still looks) like he’s in a lot of distress, he isn’t really, unless you count the fact that he can’t drink again. ::frustrated groan:: And, he’ll have to have this on at least all night and maybe even longer- until his acid levels go back to normal.

At the same time, they also stopped his dialysis temporarily because they needed to change the filter on the machine and make a few adjustments with it. I guess the filter had gotten clogged with blood clots and it needed a whole new filter. Fortunately, within a couple hours after they restarted dialysis and he’d been on the biPAP, his affect became much more like the Benji I know. So, while things never got to a critical state today, we did have a lot of activity and drama in the room, which is something I guess we should be used to by now. ☺

When they began to try to figure out what was going on with Benji, they also did a chest ex-ray, which unfortunately showed that the effusion on Benji’s right side was actually larger than it had been this morning. (An effusion is a pocket of water between the chest cavity and the lung.) So, in order to drain it, they lowered the head of his bed till it was lower than the foot end and let him lie that way for a little. I guess gravity worked because from that repositioning they were able to drain another 150 ml through his chest tubes. While it’s a good thing it drained and the total output is still less than the 600 it had previously been, it does lessen the great improvement we thought we had seen in the drainage. :(

One more exciting bit of news; the liver transplant coordinator stopped by the room this evening to say hi and see how we’re doing. When she came to the door I jokingly asked her if she came to tell us that there is an offer. She said no, but that as of this afternoon Benji’s MELD score had gone up to 34 and he was at the top of the list. I believe in one of the recent updates, I had explained what the MELD score is, but in case you missed it, it is the combination of factors that determine where one is placed on the list. (A score in the 30’s is very high and I had been told previously that when one is in the 30’s, they usually get transplanted within weeks.) Knowing she didn’t know, but hoping she could give me some type of an idea as to the time we’re looking at, I told her that I know she can’t give me an exact time, but does she have any idea how long it might be. Her answer delighted and shocked me. She said that of course you can never tell and it varies a lot; it could be 5 minutes from now or up to…….A COUPLE DAYS!!! I never expected her to say “a couple days”; evidently, that’s the longest she expects we’ll have to wait. My heart is racing now just writing about it; it seriously could be any moment that we get the call. It also begins to race whenever I see the nurse outside the door on the phone, or when the phone rang in Benji’s room earlier this evening. Oh Lord, whenever it is, let it be the perfect match for Benji and guide the surgeons hands who will be performing the surgery. And please let this be the answer to his many problems and allow him to be able to enjoy these new lungs! The Glory will be all yours!

I’m going to stop and try to get some decent sleep, while listening for the phone with one ear. ☺ Please continue to pray for God’s will to be done in Benji’s life and for the hand of God to continue to undeniably guide every step of the way!

Until next time…..

Thursday, February 14, 2013

I’m so excited as I sit down to write this evening because I have very little to say! ☺☺ (Although, knowing me, I’m SURE I can find more than enough to talk about.) I have so little to say because we had an AMAZINGLY quiet day!
::Deeeep sigh of relief and a thank you Jesus under my breath:: !!! ☺

We intentionally kept Benji sedated overnight, so he could rest and not deal with the thirst issues, with the intention of extubating this morning. However, he didn’t just sleep overnight; he ended up sleeping all day as well. It took him till this evening to finally wake up because it took that long for the sedation to wear off. (They believe the reason is because the job of the liver and kidneys are to metabolize the meds and remove them from the body; obviously, they’re not working as they should.) I’m very glad that Benji was able to get some good sleep because he needed it! However, I was sad that right about the time I was ready to leave for the apartment to get a good night’s sleep, he decided to wake up. :( The timing was especially poor, because now, he’ll have to wait all night long to get extubated. (They won’t extubate at night because they are much more lightly staffed.) I just hope he’ll be able to sleep through the night.

Also, I had planned to leave to sleep at the apartment tonight, leaving Shirley alone to stay with Benji for the night, for the first time. I was hoping she could have a quiet night, but I’m now concerned it may be a much more difficult night for her. We’ll just have to see….. I am sooo hoping that since his kidneys are working better, he won’t be so restless. We’re also hoping this will help his backaches. I have no doubt Shirley will be amazing with him, I just hope she’ll be able to get some sleep! The good news about the vent is that Benji’s lungs are doing well, and he should have no problem being taken off the vent. They’ll begin weaning him off of it over the night.

Other good news from today:
1) Dialysis was started last night and by this morning his kidney function numbers were drastically improved. In fact, the creatinine is back to normal and the BUN is on the way down. Also, he should now be at the top of the transplant list!

2) Benji’s chest tube drainage has slowed down and it has been decreasing throughout the day. It had been draining around 600 – 700 ml/day and at the time I left tonight, it had drained 194 in 12 hours; meaning if he doubled that over the next 12 hours, it would be a little less than 400. A definite improvement! However, since the drainage had been slowing down all day, we’re hoping it may even be less than that! Please pray this continues to dry up and not get worse again; the drainage plays a huge part in his healing!

3) I've spoken some about his white blood cell count being high and expressed concern about it going up. His count was elevated quite a bit today, but the doctors are not concerned at all. They said they expected this because of the invasive procedure Benji had done yesterday. Also, the pulmonologist told me yesterday that high white blood cell counts indicate two things: either infection or stress. He told me that because Benji is covered across the board for any infection, he would guess the problem is stress. And Benji’s body is certainly stressed!

I’m happy to say, Mom and Dad made it safely here today, although a little later than they had expected. It was great to see them! They didn’t however bring Dale along, but left him with Mom’s sister Fran in Florida. They figured that would free them up to stay here as long as they wanted to. When they got to the hospital, Benji was still quite sedated but was responding with nods, hand squeezes, etc. if we spoke to him. When Mom and Dad walked into the room, I went up to him and told him Grandma and Grandpa were here; he opened his eyes and under the blankets tried to move his hand. I pulled back the blanket and he raised his severely shaking hand to wave hi to them. ☺ I don’t know why, but that was an especially touching moment for me.

That’s all I have to say for today! And in Microsoft Word, it’s less than TWO pages; this must be a record! I wish each day could be a “one-page” day! ☺ Thanks again for all your prayers; I believe those prayers are the reason we had such a quiet day and why I feel so light-hearted! Bless you all and thank you God for your grace, mercy and love so richly poured out on us! Happy Valentine’s Day and sleep well friends, I’m going to try to do that myself. ☺

Until next time….

One more thing, please continue to pray about Benji's new liver (and pancreas) and that he can stay healthy enough to stay on the list. Of course, the ideal thing would be that God just miraculously touch his body and completely heal the liver and pancreas he has.

Wednesday, February 13, 2013

What a day!!! So many emotions all across the board! Tear of pain, sadness, despair, grief; and tears of joy, extreme gratitude, relief, and awe at the incredible mercy of the awesome God we serve! I’m exhausted, but at peace and light-hearted with new hope for Benji’s life.

As I stated in yesterday’s update, Benji had an extremely difficult afternoon and evening and it continued straight through the night. The extreme restlessness continued and the vomiting increased; I believe he vomited 6 times in 8 hours. I was awake with him most of the entire night, though I did get a bit of sleep early this morning. It seemed the only way he could begin to relax was when I was touching him in some way; lightly rubbing his feet, legs or head. I continued to read to him some during the night; at one point I asked him if he’d like me to lay beside him while I rubbed his head, and then maybe both of us could fall asleep for a little bit. He wanted me to but we first had to make sure all the tubes and wires were out of the way. Once tucked in beside him, I asked him if he’d like me to sing again and he nodded and said he did; so I sang for a while until I found I had drifted off to sleep and he woke me to tell me I needed to move because he was too hot. So I sat at the foot of his bed, with a stack of pillows to lie across, while rubbing his feet. As long as I was rubbing, he seemed to sleep fairly peacefully, at least for a while. But soon, he’d again need to reposition. This whole time he was asking for a drink. My heart just broke for him; he was SO miserable! One time he sat up and started crying and said he just wants to sleep and have a drink.

Around 8:00, they told us Benji needed to go NPO (no food or drink by mouth); in case they were able to get him in today to have several procedures, done by 3 different doctors. The procedures/purposes were:
1) To place a line so Benji could begin kidney dialysis. They had decided Benji’s kidney was now sick enough that they needed to start dialysis. The diseased liver has put so much stress on the kidney that it can no longer function properly. The interesting thing is that again this morning, most of the “indicating factors” regarding how sick Benji’s liver is, had not worsened. His ammonia levels were good and while his I&R and bilirubin were not great, they hadn’t gotten worse. The I&R and bilirubin are two of the three factors that contribute to the MELD score (which determines whether he gets listed and where he is placed on the list). The third one is the creatinine. The one number that relates to both the health of the liver and the kidneys is the creatinine and that level had again worsened as well as some of his other kidney function tests.

2) Replace his only remaining chest tube with two new ones; (on both the left and the right side) and suction out the fluid that is currently sitting in his chest cavity. I did say new “ones” because after Benji’s chest ex-ray this morning showed a pocket of fluid on his right side they decided he needed to have the right replaced as well. His old, remaining chest tube (on his left side) need to be removed since it had developed some yeast (or fungus) in the pleural cavity, which of course, is not a good thing.

3) Do another bronch. Since Benji was going to be put under anesthesia and would be intubated anyway; they also decided to do a bronchoscopy. They wanted to go in there and look around, get a biopsy and suction out any mucus that is in there

4) Do a pleurodesis on his lungs. A pleurodesis is a chemical “burning” of the exterior of the lung, with the hope that it will create scar tissue and adhere to the inside of the chest cavity. The reason they wanted to do that is because they believe the unhealthy liver is causing stomach fluids to seep up through the chest cavity into the pleural space (the space between the chest cavity and the lungs), and the hope is that the reinforced tissue will keep the fluids from seeping through. There is no guarantee that this will work, in fact the surgeon only gives it a 50-50 chance. This is also something the surgeon has put off as long as he could because once this is done there is no option for Benji to have another lung transplant if needed. Obviously, at this point, that’s the least of our concerns because our focus now is simply to get him through this transplant.

We were happy that Benji didn’t have to wait the whole day and they were able to do his procedure by 2:30 p.m. Fortunately, everything also went well. We were glad to hear there was not a lot of mucus in his lungs. The only concern was the suture site; that is not healed as properly as it should be which they attribute to how sick his whole body is, as a result of the dysfunctional liver. He came up to the room still intubated, because the surgeon wanted to leave it on overnight, just as a precaution. They are keeping him fairly sedated over night to give him a good night’s sleep, and keep him more comfortable. It will certainly help me get a decent night’s sleep as well. I cannot tell you how delighted I am that I don’t have to be a part of torturing him all night, by telling him he can’t have anything to drink.

That was the easy part of the day. This morning in rounds I was excited to hear that they were going to now go ahead and list Benji, either today or tomorrow. I was so happy to hear that, however, while in rounds, I noticed the transplant surgeon walk up our way and thought maybe he was planning to join us; but when he didn’t and then turned to walk away, I broke away from rounds to go see what he wanted. He told me that he was coming to see how we were doing and then, with obvious regret, informed me that the chances of Benji being listed were quite slim; he is just too sick. I brought up the few things I could in defense of why he should be able to do this, but the surgeon just continued to regretfully tell me it wasn’t very hopeful. My last thing was to plead with them to please give Benji a chance. This was the only chance he had and he deserves this to try to get him out of here to enjoy those perfect fitting lungs of his. Looking back, I am amazed at how composed I was at that time. I hadn’t broken down, but had simply pleaded for Benji’s life. His final comment to me was that he would have to defer this decision to Dr. Krippen, who was the “world renowned specialist” in this field.

I walked away from him and went immediately to the Intensivist (Intensive Care Specialist), who had just told me that Benji WAS going to be listed. I told him what had been conveyed to me and his response was that he will have to defer to them, they’re the specialists. Again, I plead for him to give Benji a chance. From there, I went to call Allen and tell him the devastating news that it doesn’t look likely that they’re going to list Benji. Of course I shed some tears while talking to him, but as soon as I finished talking to him, I instinctively went looking for someone I thought MIGHT be able to help me, though I didn’t have a lot of hope for that either. On my way to find her, I did have tears, but again, I am surprised I wasn’t more of a wreck (I may have been partially in shock and kind of been operating in auto pilot); as I walked I was quietly crying out to God. The person I was looking for was not available, but I ran into the social worker from the transplant team. She was speaking with someone else at the time, so as I stood waiting for her, I began writing a text to send out, requesting prayer for the situation. This is a less abbreviated version of what I was preparing to send: “I just spoke to liver surgeon who dejectedly told me it doesn't look very hopeful that they will list Benji because he is too sick (unless he gets better though they don't have great hope for that.) I plead with the doctor to please give Benji a chance; he said he needs to defer to a Dr. Krippen. Please pray that God would intervene & give him compassion. If not this, that God would miraculously heal Benji.”

I hadn’t quite finished the text, when the social worker finished and came over to me. She could immediately see that something was wrong and was shocked when I told her the latest turn of events and asked if I wanted to go into a room to talk. I said no, I’d be alright; I just needed to get back to Benji’s room. She said she’d walk with me, so while we walked, I caught her up a little on what had happened.

I really am not sure what all was going on in my mind and emotions at that time; I just know that while I had very little hope this was going to happen, the surgeon had not totally closed the door and I was going to do whatever I could to keep that door from closing, starting with requesting prayer. As we neared Benji’s room, I can’t even tell you which direction the surgeon came from, or how I first made eye contact; all I know is that he was suddenly by me, telling me with a light in his eyes, that they had decided they WOULD list Benji and they would start the process right away. At that moment, any composure I possessed completely crumbled and I burst into tears. Before I could even think, I had given the surgeon a hug and was thanking him profusely for giving Benji this chance at life! He proceeded to caution me about what a high risk surgery this would be, and that there is a chance Benji may not make it home afterward. My response was that we are very aware of the risk, but it appears there’s a much greater risk of Benji not making it home, if he doesn’t do transplant! He said, “Well, there were about 20 to 30 physicians advocating that Benji be listed, so we decided to do it.”

I cannot tell you who all those 20 to 30 physicians were, all I know is that there is an INCREDIBLE staff of caring people at this hospital, as well as at Barnes-Jewish, who stood in the gap for Benji and fought to do everything absolutely possible to save his life! This was borne out at the joy and excitement I saw among various doctors and staff as they came by to have us sign papers and congratulated us with huge smiles and some with tears in their eyes. Many times today, I saw professional medical staff that haven’t just been doing their job here, but have actively invested themselves in caring about and advocating for Benji. We give God all the glory for once again being so gracious and merciful to us, but he has some pretty amazing vessels in this hospital, helping to carry out his plans.

By approximately 4:00 this afternoon, everything was in place (incredibly, that included insurance and financing), and Benji was officially listed for liver transplant. He was listed with a MELD score of 25, and the liver transplant coordinator told me people with that score begin getting offers. She said at that time Benji was second on the list but he would bump to the top of the list as soon as he’d been on dialysis for 24 hours. Amazing ….!!!!!

One concern the transplant surgeon had expressed to me was that Benji’s white blood cell count was a little elevated this morning. This frequently indicates infection and he commented that if that continues to climb, he would probably be taken off the list. This is of course a concern, however, when I spoke to Benji’s pulmonologist, he said that elevated white blood cells can indicate infection OR stress. He said that since Benji is covered by such a broad range of antibiotics he finds it unlikely that it being caused by infection. And, that there was no question Benji’s body is under stress! I would think so! This was another ray of hope. The third significant ray of hope we were given today, was when we were talking to Benji’s lung transplant surgeon. He seemed very positive about Benji’s chances; while his condition is grave, Benji’s lungs are really in good shape and he has great hope that receiving that new liver will make all the difference; allowing Benji’s body to heal as it needs to. We pray this is so!

Of course the next prayer request is that Benji receive his transplant while he is still healthy enough to do it. As I have stated before, requesting something like this is always awkward, but we are not asking God to take someone’s life so that Benji may live; instead we are asking that of the lives who will tragically be lost, there will be a liver available that matches Benji’s needs.

As you may know, Allen went home on Tuesday, to spend a little time with the other boys until Saturday, so he was not here during this unbelievable day. But I’m so glad he was wise enough to ask my sister-in-law Shirley Troyer if she could be here while he was gone; it was so awesome to have her here with me today! She has been an amazing support! The poor lady! For about a half hour to 45 minutes today (after we had been told Benji WOULD be listed), she was rubbing Benji’s feet thinking that he would not be listed, due to poor communication on my part. The relief and shock when she discovered he WAS being listed was overwhelming! Tonight, because I don’t think I could relax sleeping anywhere but in Benji’s room, she is sleeping in the uncomfortable family lounge here at the hospital, to be a support to me if I need it. I think once I finally get finished updating my journal, I should be able to get some decent sleep, because Benji is asleep and comfortable, with two nurses with him nearly constantly. Thank you Jesus!

My mom and dad are also currently on their way here. They are driving here from Sarasota, Florida and are planning to drive all night; arriving here around 10 in the morning. I told them this isn’t an emergency and they shouldn’t push themselves to rush here, but mom didn’t think she could sleep anyway. Her heart has been here for a while and she’s had a difficult time being anywhere else. We pray they drive safely.

Allen really struggled with what he should do today. This morning, my mind and emotions were in such turmoil and I really didn’t know if Benji’s condition was good enough to make it through this procedure, despite the fact that the doctors, and especially the anesthesiologist felt very confident he would do well. I thought maybe he wanted to come immediately in case something happened, but he decided he would wait until after the procedure to see how that went before making a decision. I think that was wise and I’m hoping he can stay till after Cory’s game on Friday night. Of course, if a liver suddenly became available, he and the boys would head down here again. My heart aches for the tugging back and forth that the other three have been through. They had also been told the devastating news this morning and were still digesting that when they got the news that he was going to be listed. Please continue to pray for them, as I know you are.
Oh thank you once again tonight Lord, for granting us the desires of our heart! I continue to believe you will bring Benji through this. I just pray we continue to hold fast to our faith and that you will be glorified through it all!

Psalm 145
A psalm of praise. Of David.

1 I will exalt you, my God the King;
I will praise your name for ever and ever.
2 Every day I will praise you
and extol your name for ever and ever.
3 Great is the LORD and most worthy of
praise;
his greatness no one can fathom.
4 One generation commends your works to another;
they tell of your mighty acts
5 They speak of the glorious splendor of your majesty—
and I will meditate on your wonderful works.
6 They tell of the power of your awesome works—
and I will proclaim your great deeds.
7 They celebrate your abundant goodness
and joyfully sing of your righteousness.
8 The LORD is gracious and compassionate;
slow to anger and rich in love.
9 The LORD is good to all;
he has compassion on all he has made.
10 All your works praise you, LORD;
your faithful people extol you.
11 They tell of the glory of your kingdom
and speak of your might,
12 so that all people may know of your mighty acts
and the glorious splendor of your kingdom.

Tuesday, February 12, 2013

This morning, Allen, my brother Jim and my nephew Jalen took off for home around 9:30, in time to get home for Cory’s game tonight. We are grateful they made it home safe and sound. Shirley came over when Allen left and stayed here until I got here around 1:00. There are an INCREDIBLE amount of things going on with Benji in every different direction and there’s no way someone can EVER be expected to come in and quickly understand and learn it all; it must be nearly overwhelming! Bless her heart though, there’s no one who could be more dedicated to learning everything and understanding what all’s going on, even far beyond what is required.

Benji had a fairly peaceful night, morning and early afternoon. However, after occupational therapy and physical therapy had worked with him back to back, he began to complain of back pain. (No pun intended- HA!) The rest of the afternoon he struggled with the back pain and restlessness. He took his Oxycontin every four hours (as often as allowed.) This helped some with the pain, but he was still very restless. He couldn’t seem to get comfortable; he’d lie on his back for a while then want to sit up. Then on his side for a little, but that didn’t last long. He’d doze off until some small thing would wake him up. Could you rub my feet? Back down on his back with a heat pack under the small of his back, where the pain was. Sitting back up; could you rub my feet? Dozing off again. Around 11:30 p.m. she gave him some Fentanyl which seemed to relax him for about an hour. Pray that he could relax and get good sleep at night. It’s hard to fight off sickness when we can never get a good night’s sleep.

I ended up sitting beside his bed tonight for around three hours, just to be there when he needed me. During the time I wasn’t rearranging him or his pillows, I was lightly rubbing his feet and legs while reading to him. I began reading the end of Big Mountain Bigger God, but he kept drifting off to sleep and I didn’t want him to miss parts of the book. (I’ve had a hard finishing that book because lately, I’ll barely start reading and he’ll doze off.) So, since he was so sleepy I pulled out a stack of papers I had printed with verses of encouragement and hope and read those to him. Later, when he was awake for longer periods, I’d read some more in the book; we did finally actually finish the book. What an inspiration the Mullett's testimony has been to me!

During part of this time I also talked to him some about what’s going on, how sick he is and the tightrope he’s walking. Like most of us, Benji isn’t ready to leave this earth and is still fighting to continue to live; however, we are so grateful that he has expressed that he is not fearful and that he is at peace if Jesus would choose to take him home.

So what is Benji facing? This afternoon all the doctors from both hospitals had a joint meeting to discuss how to proceed with Benji’s care. This included from SLCH: the lung transplant team, the liver transplant team, the pulmonologist, Benji’s lung transplant surgeon, the liver docs and the PICU doc. From Barnes-Jewish (the hospital where Benji’s liver transplant will be done): the liver transplant team, the pancreas/kidney transplant team, the transplant surgeons, and the liver doc. After the meeting, I met with some of the SLCH docs, the pulmonologist, the liver doc and the PICU doc, so they could relay to me what had been discussed.

First, all the doctors agreed that even if not right now, Benji will at some point need a liver transplant. However, since over the last five days his bilirubin numbers have been trending down, the liver transplant team no longer considers this to be an emergency situation, which gives them a bit more time to wait and see how things go. If his numbers continue improving, and his liver does actually settle down again and become relatively functional, they would put off transplant at this point (though they consider this to be very unlikely and I would consider it a miracle! ☺) I found it interesting that though his bilirubin has been looking better, his creatinine levels have been getting worse, which also contributes to the MELD score that I spoke of in the last update, so I don’t know if that means the creatinine levels aren’t as important or what. My impression was that the SLCH docs preferences would be to proceed immediately with the liver transplant before it’s too late; but the liver transplant team would prefer to wait as long as possible after his lung transplant in order to give him a bit more time to stabilize. The problem is that Benji is walking such a tightrope, that he could easily become too sick to do transplant if we wait too long. One consolation in this is that according to what I was told, everything is now in place so that when it comes time for listing, he can be listed within a matter of hours.

Another thing that concerns them is that the results are back from the sputum cultures they took with his last bronch and the AFB (the rare bacteria he had in his old lungs), is still continuing to show up along with some other bacteria. And now he also has some fungus in his chest tube and in his pleural cavity (the area between the chest cavity and his lungs, where there continues to be fluids that aren’t draining properly). I was told they’re planning to remove the chest tube and replace it with something recommended by the Barnes doctors and something the SLCH doctors aren’t familiar with, but they didn’t have the full details on that yet. One ominous thing the doctor told me was that if they cannot get control of and get rid of these bacteria and fungus, then a liver transplant won’t help anyway.

Another issue is Benji’s kidneys. As I mentioned above, Benji’s creatinine level has been rising which indicates that his kidney function is decreasing. I spoke to the kidney doctor from Barnes today and she said she believes there’s a good chance Benji will need to go on dialysis within the next few days and probably be on it through transplant and a short period afterward; but fortunately she is fully expecting it to return to normal function. PTL!

At this point all of Benji’s vital organs are struggling; they all depend on each other in some way or another and when one become extremely dysfunctional, it affects the others. All of this puts Benji in an extremely grave situation but I believe both Allen and I are at peace, knowing that God is fully in control. Maybe he will choose to miraculously heal Benji’s liver and even his other organs. How awesome would that be? If not, and Benji is supposed to receive a transplant, We are praying and trusting the doctors will make the right decision regarding the timing of it. Just pray that God’s will be accomplished in all of this and that he would be glorified. And if God chooses to heal Benji as I believe he will, we will, at the top of our lungs give all the glory to God!

The most difficult thing for us is watching Benji suffer. I ask you to pray that God would ease Benji's pain and restlessness and that his test results over the next few days clearly give the doctors an indication of which way to go. And if Benji is supposed to have this transplant and this is what’s best for him, that the doctors list him at the appropriate time. Also pray that his body would be strong enough to fight off the bacteria and fungus in and around his lungs. Though we are at peace knowing God is in control, we continue to ask urgently for prayer, asking God to heal Benji completely.

Philippians 4:6-7 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus.

Until next time…..

Monday, February 11, 2013

So it appears that God once again decided it’s not yet Benji’s time to go! Without going into a lot of detail, we found out this evening how blessed and fortunate we are to not be taking Benji home right now, out of options to save his life. The person relaying this information had been so devastated on Friday because they had been told more than once on that day that a liver transplant for Benji was impossible because of the low survival statistics post-lung transplant. This person didn’t know what had happened between that time and the time the two liver transplant surgeons came to Benji’s room late Friday afternoon to talk to us and tell us Benji needed to be listed. My answer…….GOD!

What an incredible thing to come to realize this evening how different things could be looking today and how unbelievably blessed we have been, once again! We don’t know what made them decide Benji’s life was worth fighting for, except for as I said, God! We are sooo grateful again for God’s merciful intervention. It is overwhelming!!!

And while we are so grateful and believe this is another confirmation that God still has a plan for Benji on this earth, we are so far from being out of the woods. The first month or so post-transplant, Benji seemed to move forward three steps then back two, then forward three again; but was overall continuing to slowly improve. It no longer feels like that. He is a very sick boy, and while he may have some days that are better than others, barring a major miracle, I don’t foresee him improving before getting a liver transplant. We know God has a plan and timeline; just help us pray for God’s will to be accomplished.

Benji had a difficult time overnight last night and none of us slept very well. There was nothing particular that was happening to cause it, aside from some concern about fluid build-up and it just seemed like there was one interruption after another. The whole balance of keeping him hydrated enough without over-hydrating and having fluid build back up in his lungs is a continual balance. Yesterday he had again had “positive output” (meaning he was taking in more fluids than he was getting rid of), so diuretics were again increased and fluids denied. I CANNOT tell you how difficult it is when my child’s skin looks dry from dehydration and his lips are parched and then when he asks for just a little sip of water I have to tell him no! Of all the simple things I can do for him, when he is in pain and has all these other problems; and yet I cannot give him just a drink of water.

On Saturday, his output had been too negative, so Sunday he was told he could drink all he wanted and at the same time some of his diuretics were decreased. I’m guessing in retrospect it would have been better to not do both because by late yesterday afternoon they were saying that he’d become too positive again and couldn’t drink anymore till the output again became negative. It seemed to be taking longer than it should to get him negative again so there was concern that the fluid might be building again. (In fact, this morning the chest ex-ray showed a bit more fluid on his lungs again.) Anyway, with something like that hanging over our heads, it’s always harder to relax and the docs and nurses are in and out of the room more frequently. He also had a more difficult time sleeping for some reason.

My sister-in-law Shirley stayed in the room with me last night to get an idea of what the nights look like. She might regret having said yes after last night; it was much more disrupted than it typically is. We’re praying this isn’t what the week will look like. Would you pray that especially the nights Shirley stays with Benji will be quiet?

Benji’s day was a bit better; he was able to begin to drink some again but we have to keep it to sips or ice chips. He was also up in a chair for about 20 minutes and pedaled a bike for a little bit. This is very important because it seems his body is becoming weaker by the day, as he stays in that bed longer and longer. Jalen was back in the room with Benji for a lot of the day. Bless his heart! I’m sure he got a little bored at times, but the nurse got a Wii game for them to play and Benji actually played with Jalen for a little. Even though Benji wasn’t able to enjoy it like we wish he could have, I know he just appreciated the fact that Jalen was there and he feels comfortable enough with Jalen to sleep or do whatever. I was glad Jalen at least had the Wii to give him something to do when Benji would sleep.

I had come back to the apartment for a few hours this afternoon to get a bit of a nap before going back over to the hospital again this afternoon. I was hoping to be there when the liver transplant coordinator stopped by the room but I missed her. She had Allen sign a bunch more papers and also reiterated much of what we’d been told over the weekend. Things are looking good and they think he should be able to be officially listed by Wednesday and maybe Thursday. Tomorrow there is a big meeting of all the docs from the liver and lung transplant teams in both hospitals. Hopefully many of the logistics can be ironed out there. The plan also is for Benji to stay at SLCH until transplant then be at Barnes-Jewish for a couple weeks post-transplant, before moving back to SLCH.

One piece of very encouraging information we received today is regarding how it is determined where one is placed on the list. As I had stated last time, there are three numbers that primarily make up the “MELD score”; creatinine, I & R and the bilirubin. I was told that someone with a MELD score in the 30’s typically only has to wait weeks to get a liver. Last week Benji’s MELD score would have been in the 30’s, however, this week, since his liver numbers were looking better, his MELD score was only 22. While it is a good thing to keep his liver functioning as well as possible, we were concerned he wouldn’t be able to get a liver if the numbers stayed “good” most of the time. We were glad to hear that once Benji is listed, his MELD score will never go lower than the highest number he has. For instance if his score is in the 20’s for a week then he has one really bad day which creates a MELD score of 35, his MELD score will now never drop below 35, even if that’s not actually how bad it is most of the time.

If we spend time thinking about all of this, we would absolutely sink because it’s just too much to handle. When my cousin Cheryl and her husband Cliff were here on Saturday, one of the things Cliff stated which was a good reminder (and is something I have thought about a couple times since), is that to keep from remaining discouraged, we need to take our eyes off the problem and focus them on God.

As I’ve stated before, this battle to remain at peace and hopeful is constant and this afternoon was a good example of that. I had lain down to take a nap and I woke up a couple hours later in a panic. I was dreaming that a doctor had just told me that there was absolutely nothing more that could be done for Benji. It was one of those dreams that are so real and as soon as I woke up I immediately called Allen and asked him if everything was ok. He assured me that things were about the same but I got off the phone with the same feeling and began frantically asking God to please save Benji and to fix things, etc, etc. In the middle of that I remembered that I needed to focus on God so I immediately pulled up some scripture verses my dad had sent us. These were the first two I read:
Romans 12:12 Be joyful in hope, patient in affliction, faithful in PRAYER.
Psalm 119:114 You are my refuge and my shield; I have put my hope in your WORD.

Right there were both of my answers; PRAYER and THE WORD. I was praying, but I needed to soak myself in the truth of God’s Word. Between praying, reading scripture and listening to worship music, my spirit again began to calm and I was able to focus on bringing glory to God. Is this not what it should all be about? When my focus changed to what brings glory to God, I was again able to release Benji into God’s hands and trust him with the entire situation. That was today, tomorrow I may need to go through this all over again.

Allen has had similar experiences. Neither of has ever doubted the goodness and love of God; we are now however, learning to live, day by day, hour by hour, totally dependent on God for the life of our son. We are slowly learning what it means to truly place Benji in the hands of the One who loves him most. In fact, this is what we need to do for not just Benji, but Aaron, Tyler and Cory as well; (and all of life for that matter). We have been entrusted with the care of each of our precious sons, but we are daily learning to hold them more loosely.

I have a whole list of specific prayer requests again tonight; we are asking God for the desires of our hearts. (I can’t tell you what a blessing it is to know that there are prayer warriors literally all over the world who are interceding for us!)
• That things go smoothly this week; especially the nights Shirley stays with Benji.
• That Allen could relax and enjoy himself at home with the other boys
• That God would give safety as they travel
• That God provides the strength I need to manage here without Allen
• That listing for transplant would continue to move forward speedily
• That there would be no glitches with insurance/financial issues (or with anything for that matter)
• That transplant would progress in a timely way; within God’s perfect timetable
• Comfort and peace for Benji and a waiting period free from pain
• Comfort and peace for Benji’s brothers, Aaron, Tyler and Cory; this is rough for them as well!
• Wisdom for the docs as they try to keep Benji stable until transplant
• That Benji’s fluids could be managed in a way that he wouldn’t need to be thirsty any more
And of course, the ultimate prayer request, that God would just miraculously heal Benji now, with the organs he has in his body.
Jeremiah 29:11-12 “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.”

Blessings until next time….

Sunday, February 10, 2013 7:23 PM CST

At 9:00 yesterday morning Allen and I met with the liver transplant doctors. We love Benji’s lung transplant surgeon who is a very gentle, soft-spoken man. The liver transplant surgeon’s personality is very different; he is not unkind, he is just much more of a matter-of-fact, no-nonsense type. We especially appreciated it then, when towards the end of the conversation he also expressed compassion and interest in not just Benji’s well-being, but ours and the other boy’s as well. Despite the differing personalities, both doctors do a great job at instilling confidence.

A few of the things we learned:
• They are planning to do a combination liver-pancreas transplant
• Praise the Lord; they are confident that Benji current health is good enough to do the transplant; this could however change very quickly and it is a possibility that if he doesn’t receive the transplant relatively soon, he could get too sick to do it.
• This surgery will need to be done at Barnes-Jewish hospital, because SLCH does not do this type of transplant. The hospitals are next to each other, both owned by Washington University and many of the doctors have privileges (the right to work) in both hospitals.
• Barring a major miracle, Benji will need to stay in ICU until transplant, but fortunately gets to do that at SLCH.
• The ideal way to have done this is to have gotten all the organs from the same donor and transplanted them all at the same time; however, since no one had any idea what kind of shape his liver was in, that didn’t happen.
• A lung-liver transplant from different donors is seldom done; Barnes-Jewish is considered to be a world leader in liver transplants and has only done 7 of these. The good news is that 6 out of the 7 are doing well with it.
• Sadly, in Benji’s case a living donor transplant is not a possibility. The doc said he needs a full liver.
• They believe Benji should be able to be officially listed by the middle of next week
• Length of wait depends on how bad he’s doing; those who need it worst get it first. We were delighted to hear that those at the top of the list usually only have to wait weeks.

Allen and I are feeling at peace about transplant and if all goes well, Benji could be better off in the end. Most cystics end up becoming diabetic and while Benji had been skating by, he is now insulin-dependent and would have been for the rest of his life. With a new pancreas Benji would not be diabetic nor would he need to continue taking enzymes to digest his food! I believe they also said his body would be able to absorb fat better. Also, we were told that as soon as that new liver is attached it begins to work. Hopefully that means his body will immediately begin functioning properly and he’ll finally be able to heal from the lung transplant. Additionally, the surgeon told us that even if Benji’s liver stabilized now, there’s no question he’ll need a transplant at some time down the road. According to what we’ve been told, he may have had a difficult time getting listed years from now, because there is only a 50 percent chance of surviving more than five years after a lung transplant. Also, if he’s going to need one anyway, why not do it now, while we’re here.

Our biggest concern now is insurance and him staying well enough until he can get the transplant. I was told yesterday by one of the liver transplant doctors that from what she’s heard, she thinks the financial end of things has pretty much been worked through. However, I don’t think I’ll relax until everything’s final; I’m just concerned there may still be some bureaucratic glitches. As far as staying well enough: Where one is at on the list is determined by three factors; the creatinine level, the bilirubin level and the I & R (blood clotting factor). On one hand we don’t want his numbers to get really bad because that means he’s really sick, on the other hand, if his numbers get too good he’ll have to wait much longer for a liver. It’s a difficult line to walk but we are trusting God with the details and are asking for and believing that a liver will be provided in a timely manner.

This was my FB post from yesterday:
Please pray that official listing would go smoothly (including insurance issues). We are first asking God to perform a miraculous healing on all of Benji's organs and especially the liver, if this is his will; otherwise, that a new liver will become available in time. Since the first transplant, we are even more aware of the awkwardness of asking for a donor organ because it means another person's life will be taken. So just to clarify, we are not asking that someone's life be taken sooner so that Benji can live; but instead that of those whose lives will tragically be taken, there will be a liver that matches his needs. We are again asking for urgent intercession on Benji's behalf. Thank you so much!

I thought Benji seemed weaker Friday and Saturday morning, however they gave him two units of blood yesterday to replace what he’s losing and I thought he seemed a bit stronger yesterday afternoon and today. They also gave him plasma both yesterday and today. By the time I left the hospital last evening, he was sitting up reading; something he hasn’t done for a couple days. Any time he shows an interest in reading, watching TV or being on his computer is encouraging for us.

Probably the most difficult thing for Benji now is his backaches. The cause is still a mystery to the doctors but we’re wondering if it doesn’t have something to do with his liver. Hopefully this will be better after transplant. Fortunately, the pain has been managed with pain meds, however they always make him sleepy. His ammonia levels are staying good. Thank you Lord! And Benji’s bilirubin has also been trending down; yesterday it was 11. He has needed to be on oxygen the last two days, but we’re thinking it might be because his fluids have been so restricted that he was becoming dehydrated. Being dry causes the mucus in his lungs to become dryer and stickier which makes it difficult to cough out. This is probably also the reason why his lab work for his kidneys didn’t look quite as good today. It is a constant balancing act for them because in order to get the draining to stop, he can’t have too many fluids, however if he doesn’t get enough fluids it causes other problems. It reminds me of a teeter totter that we’re trying to balance; it begins to tip one direction, so to keep it from tipping completely over, we have to change course until it starts tipping too far the other way. This is why they are keeping everything closely monitored.

Benji had a wonderful surprise last evening! Uncle Sylvan and Aunt Connie came again, but brought along a couple extra people who Benji wasn’t expecting; two of his cousins. One was Allen’s sister Naomi’s son Nate Raber and the other was my sister Roses’ son Jalen Yoder. Nate is a few years older than Benji, but Benji still always appreciates when he and his twin brother come to visit. Jalen is only a few months older than Benji and they have been best buds since the time they could talk. On Friday evening, I was thinking about what might bring Benji some joy. He knew his brothers weren’t able to come down this weekend, and I was sure it was disappointing for him to think there were no “kids” coming. (At that time I didn’t know Nate was coming.) Benji’s cousin Jalen came to my mind; I knew Benji would love to see him so I called my sister to see if it would work for him to come down with Sylvan. They talked about it and decided it would.

I was so glad Jalen was able to come because the more I thought about it the more I became aware of how alone Benji might be feeling. I recall before we moved here that Benji had remarked that the most difficult thing about moving here was that he was going to be alone (away from his brothers and friends). We are so far from home that people obviously can’t just stop by so aside from his brothers he’s hardly seen any kids in about 6 weeks. Prior to that, he’d been in the hospital most of the previous 3 months and at those times, was also confined to his room for weeks on end. Allen and I are at least able to get away from things here, plus we are constantly getting encouragement through texts, FB, CB and emails. Benji hasn’t been using his phone at all since he’s been admitted and most of the time he doesn’t feel like being on the computer, so he really hasn’t had much contact with people. In order to help combat that lonely feeling, I have decided I’m going to try to read to him every post, CB comment, text, etc., especially from people he knows and others as I can.

Back to Benji’s visitors; I had already gone to the apartment when they came and Allen was not in the room when Nate came in; however, he was in the room when Jalen walked in. Allen choked up when he was telling me about it and said he was not prepared for what he saw, but it was a "precious sight". I think I’m trying to describe something that was indescribable, but Allen said as soon as Jalen walked into the room, Benji’s eyes locked on him and followed him all the way to the bed. He said it almost looked like Benji was just waiting for Jalen to say something to see if it was really him and his eyes had a glow, like he was sooo glad to see him. Allen also watched them interact and said their interchange seemed very comfortable and Benji laughed some with Jalen (something we have almost never seen since transplant). It was so great, we decided to extend Benji’s joy and after checking with Jalen’s parents, it was decided he would stay here and go back home with my brother Jim on Tuesday.

We have felt so bad that the other boys have to be home alone, especially Cory and there are some things Allen really needs to get done with the business. He’s only been home for a day or two since Benji’s been hospitalized and that time he had to rush back down here the first time Benji went into respiratory failure. Allen called my brother Jim and his wife Shirley last week to see if she might want to come down and stay with me for the week so he could go home; he didn’t want to leave me here alone. They graciously agreed to do that and since they had already been planning to come down this past Friday, they just decided to come today instead. They’ll be here shortly and Jim is planning to stay until Tuesday then Allen and Jalen will be going back with him. Allen will be coming back down with Jim then next weekend. I’m really glad he gets to be home for at least a little bit and I really hope to be able to yet at some point in the near future; I really miss our other boys!

As I had mentioned, Sylvan and Connie were here again, but two of Allen’s other sisters and their husbands also came down today as well; Naomi and Ervin Raber and Jr. and Rose Yoder. They left home this morning around 3, drove down and stayed for a couple hours before turning around and driving back home. It has almost become routine that when Sylvan comes down on the weekends he stays with Benji overnight while Allen and I get a good night’s sleep at the apartment. It seems to work well because I think it feels good for Sylvan and it’s a nice break for Allen and me. He did so again last night and that is always so much appreciated. We also had a surprise visit from my cousin Cheryl Miller and her husband Cliff yesterday. That was an unexpected surprise and we visited for a while then went back to Benji's room and had a good time of prayer over him before they left.

I close tonight simply by saying, God is Good, ALL the time! and thank you again and again for ALL of your continued support, especially through prayer!

Until next time….

This is a song that I love and has been going through my head all day

I'm trading my sorrows
I'm trading my shame
I'm laying them down for the joy of the lord

I'm trading my sickness
I'm trading my pain
I'm laying it down for the joy of the lord

We say yes lord yes lord yes yes lord
Yes lord yes lord yes yes lord
Yes lord yes lord yes yes lord amen

I'm pressed but not crushed persecuted but not abandoned
Struck down but not destroyed
I am blessed beyond the curse for his promise will endure
That his joy's gonna be my strength
Though the sorrow may last for the night
His joy comes with the morning

Friday, February 8, 2013

Posted on FB this morning:
So today, I'm going to make myself very vulnerable and do something that is quite scary for me. I am going to take a public step of faith. This is scary, because I don't presume to know God's ultimate plan for our family, (and what if I turn out to be wrong?) In all these weeks, there is only one time that I believed God was speaking directly to me regarding Benji's future; it was on the night of Benji's first respiratory failure. I believed God had spoken to me through the Psalms that I read, and told me Benji was going to live to tell of God's miraculous work in his life. I am choosing today to believe that WAS God speaking to me that night. I don't know if my theology is totally sound but I know God is a God of hope, not despair and I am trusting that God led me to that scripture that evening, because he wanted to give me this hope. Today I am stepping out in faith, believing that God does want to glorify himself through Benji's miraculous recovery/recoveries. And I am praying for His will to be done in Benji's life. (The "Psalm 89 link at the bottom of the page will take you to an explanation of what and why I believed God was speaking to me at that moment.)

Last evening I left the hospital feeling fairly upbeat, but by the time I finished writing yesterday’s update, I was beginning to feel some discouragement. I went to sleep that way (when I finally got to sleep) and woke up feeling the same way. After texting Allen to see how the night with Benji went and hearing that overnight he’d had to go back on 3L o2, I became more discouraged. I cried out to God through my tears for a while; expressing my frustration that Benji needs to suffer. Can your will not be accomplished without putting Benji through this? Lord, please bring some GOOD news today! Please allow Benji to experience something today that leaves no doubt in his mind that you love him! Give him a break! I know you love us so much, but I just can’t understand your ways!

As I was crying out to God (aloud since I was in the apartment alone☺), I began to sense this was not just a physical battle, but a spiritual one as well. I sensed that there was a heavy spirit in Benji’s hospital room so I began to pray against a spirit of oppression and discouragement; that Satan not be allowed to have any foothold. I asked God to, in the name of Jesus, remove these things and in its place, fill the room with an aroma of joy! That the room would contain such a spirit of joy that everyone who walked into that room would feel that joy! As I was praying these things, I began to sing along with some of the worship songs that were playing and a spirit of joy literally filled my heart.

It was at this time that I began thinking about my earlier experience with God telling me Benji was going to be okay; and as I mulled this over, I was lead to take that step of faith publicly on FB (which I talk about in the first paragraph.) I believed this was what God was asking me to do. I later received a message from a friend who I felt said it so beautifully, “You must stand in faith on what He's shown you, ‘always holding your hands wide open should He choose a different path,’ but don't doubt that He has spoken and that He will be faithful and keep His word.”

We received SO MANY words of encouragement this morning and a godly woman whom I didn’t know got a message to me that included her phone number, saying she believed we were fighting a spiritual battle and that she felt God was asking her to pray with me, if I chose to do so. Of course I did and so on my way to the hospital, I had a wonderful conversation and time of prayer with her. She prayed powerfully against any spirits of darkness in Benji’s room, and asked, in the name of Jesus, that Benji’s room would be cleansed from any spirits of discouragement, despair and death that may be lingering there.

I walked up to Benji’s room, feeling like I was walking on air; Satan was going to be defeated! I was delighted to hear some of the encouraging things that were happening and some of the improved test results. Benji had been on 3L o2 overnight and was now SATing very well on 1 ½ L. His back pain had lessened. There was less drainage in his chest tube than there was yesterday. The wound (where the right chest tube had been), which a week ago, was still draining so badly that they needed to change the dressings about once an hour (this was AFTER the tube had been removed), had not only stopped draining, but has healed over as well. His elevated bilirubin levels were down for the second day in a row. All encouraging signs!

FYI: Bilirubin is a yellow substance in our bodies and when a person has too much of it, it makes the whites of the eyes look yellow. Benji’s eyes have been yellow since right shortly after transplant, and I’ve been waiting for that “unhappy liver” to settle down and the whites of his eyes to look normal again. I’ve never paid much attention to liver stuff, because it’s never been an issue for Benji. I’ve known that Benji’s liver function levels have been varying quite a lot, but, aside from the ammonia levels, none of the other numbers seemed to be important enough to pay much attention to. However, we learned on Wednesday that the normal range for bilirubin is 0.3 to 1.9 and Benji’s was 20!! Whoa! Obviously, not good! Yesterday it was slightly improved to 17 and today it was down to 13. I was happy that we were at least moving in the right direction.

After coming into the room, I sat at the end of Benji and shared with him all the encouraging words we had received and how we’d been praying that our room would be filled with a spirit of joy and that any spirit of oppression and discouragement would be removed. I have no doubt that Satan HATED the sense of joy and peace I was experiencing. Yes! Maybe we were finally going to win this battle and move forward.

Between 3:00 and 4:00 this afternoon, Allen left to go back to the apartment and I perched on the end of Benji’s bed to rub his feet while we talked. I wasn’t quite finished when two doctors I’d never met entered the room and introduced themselves as liver transplant doctors…… oh-kay?.... What was this all about? Evidently since I last heard from the pulmonologist that Benji’s “unhappy liver” should eventually be fine, some things had changed because we were told, in short, that Benji has severe cirrhosis of the liver and that it is a progressively worsening disease with no way to treat it with meds, etc. The only hope for Benji’s survival is for him to have a liver transplant.

BOOM!!! Wow! Where did this come from? This was not something we had even considered. In fact, soon after the transplant, when his liver issues first began to show up, we’d had a conversation with the lung transplant coordinator and at that time I had asked her if it would be possible for Benji to receive a liver transplant in the future, if he needed one. She said that there were very few cases where it couldn’t be handled with medication, but that if he needed one, she couldn’t say for sure, but that considering prognosis five years post-lung transplant is only 50 percent, they might not think it was worth the risk and cost.

As I write this, I have this picture of Satan, (when the doctors brought the news), standing in the corner snickering, “Ha! You thought you’d gotten rid of me? It’s not that easy! Whatcha gonna do with this one?” I am amazed myself at the peace and calm I felt as the doctor explained what we are dealing with. I think the doctor was even a little puzzled because a few times he mentioned that he just wanted to make sure we really understood each other and were all on the same page….?? (As in: Are you really gettin' what I’m puttin’ down?) Fortunately, as children of God, we have power against the devil; I really don’t know how I would have or could have dealt with this news tonight, if not for my morning experiences with God. And thank you God for fighting this battle against discouragement for me; I could not have done it on my own!

You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world. 1 Jn. 4:4

For every child of God defeats this evil world, and we achieve this victory through our faith. 1 Jn. 5:4

Behold, I give you the authority to trample on serpents and scorpions, and over all the power of the enemy, and nothing shall by any means hurt you. ~ Luke 10:19

But thanks be to God, Who gives us the victory [making us conquerors] through our Lord Jesus Christ. 1 Corinthians 15: 57

Well, we definitely got it…apparently, unless God performs a miraculous healing of Benji’s liver and Benji’s body, he’s going to have to go through another transplant. Not only that, at the same time there’s a possibility that he may also need a pancreatic transplant. And…because of his condition, he’ll will probably need to stay in ICU until transplant. I told the doctors that if that is our only option, than we’re on board and I’m sure my husband would agree. I was relieved to see that Benji didn’t take the news nearly as hard as was afraid he might! After they left the room, I asked him what he thinks. His response was, “You mean I’d have to go through this all over again?” I sadly told him yes, it looks that way. And of course I told him that if he does need to go through with it, God will be there to help us through, every step of the way. I asked him if this is our only option, is he on board with it? He responded with a nod. It is so not what any of us wanted or expected, but despite that, I believe Allen and I both have a peace about it. If this is what it takes to make Benji well, then let’s get on with the process of getting him listed. And…. listing Benji does not preclude God’s ability to miraculously heal Benji’s current liver; which is our heart’s greatest desire. That God heal all of Benji’s organs and allow him to us these miraculous new lungs he got!

Allen and I are meeting with the doctors in the morning for further discussion. We have many questions as to what all of this means. Here are a few big ones: Do they believe Benji is strong enough to endure another surgery? How do they suddenly know for sure it’s this severe? How soon does transplant have to happen in order for him to live? How long will the process of listing him take? What about the possibility of a living donor transplant? (It’s amazing, but I looked this up and found that the liver is the only human organ that has the ability to regenerate itself- evidently unless you have cirrhosis. But if there is a living donor, the old liver from the recipient is removed and a portion of the healthy lung is put in its place. What’s most incredible is that within a couple weeks both the donor's and the recipient's partial livers grow back to their normal size.)

What a change of direction the past three weeks have taken us from the prior month. We had an amazing month of miracles and answers to prayers and then suddenly, we are having the most trying, difficult, painful days of our lives; at times wondering where God is and if he’s hidden his face from us. In the past couple weeks, I’ve frequently thought about how easy it was to praise God then; he was so miraculously answering our prayers! The real test comes when things aren’t going our way, do we still believe God is good can we still praise him?

Allen and I continue to believe that Benji is in God’s hands and that God is in full control of the situation. We will choose to continue to bless his name and proclaim his goodness, even now. Our heart’s desire is still that Benji’s body be completely healed and that he would be able to walk out these doors and enjoy those miracle lungs! We ask you to pray for that with us. But more than that, pray that none of us falls prey to losing our trust in God and his goodness!

Until next time….

(I have a feeling this thing is so full of mistakes; I’ve been fighting sleep for quite a while now.) ☺

Wednesday, February 6, 2013

From my FB timeline this morning:
“Overnight Benji’s left lung again began filling with fluid but it didn't get near as bad as the last two times. (Thank you Jesus!) He didn't have to be intubated but is on 3L oxygen. They have increased diuretics again to help get rid of the excess fluid and he will need to stay in PICU for now. They still feel positive about the liver at some point returning to fairly normal function, but it is still not working properly. His left chest tube is still draining large amounts of fluid which continues to be a big problem. I know Satan wants to discourage us but by the grace of God we will stand strong. Please continue to pray...”

I found out about the partial lung collapse- (which was caused by the fluid on the lungs) when I woke up this morning and texted Allen to find out how things were. I was once more disappointed to hear the news, but was glad it wasn’t any worse! After arriving at the hospital, I was concerned when I saw Benji. He was asleep, was very pale and I thought he looked sicker than I’ve seen him for quite a while; he also seemed very weak. Not long after I got here, Benji said the right side of his chest was hurting which of course concerned me (and Allen) further. Fortunately, nothing more came of that and not long after that he had one of his lung/chest treatments with the IPV- ( that machine that puffs air into his lungs in short bursts), and between that and the nourishment he was finally receiving through his chest tube, we saw him slowly improve throughout the afternoon.

The doctors’ concern about how damaged Benji’s liver is and how well it will ultimately function seems to vary from week to week. I had put in my FB post above that the doctors are hopeful his liver will settle down; however, this afternoon they were not quite as sure about that and said they don’t really know if it will and they are definitely concerned. Evidently Benji’s liver continues to be something we need to pray about. The other big problem is that Benji’s left chest tube is still draining large amounts of fluid. As with so many other issues Benji has had, it seems like, “If we can just get past these things, THEN he will be okay.” However, that has obviously not been the case in the past and we certainly don’t know what to expect in the future. We just continue to hope and pray the doctors can get a handle on it all.

By this evening, we were relieved to see that he seemed MUCH stronger and was sitting up in bed while reading and watching TV. He even made some joking comments a few times. He also asked Allen to get him a sandwich across the street at the St. Louis Bread Co. (which is like Panera Bread). We are delighted to hear him ask for food, because it’s been a little while since he has expressed a desire to eat. (Aside from when he had to go so long without anything in his tummy.) In addition to seeming stronger and having much better color, he’s also down to 1L oxygen (from 3L). Yay! We’re going in the right direction.

Benji will be staying on PICU for the time being, while they try to figure out the delicate balance of different treatments he needs, in order to get better. Today we were told that it’s quite likely Benji will still need to be hospitalized for another 3 to 4 weeks. In addition to the 5 weeks we’ve already been here, that would make his total post-transplant hospital stay about 3 times longer than expected. We don’t know yet, but we will certainly not be surprised if we need to stay in St. Louis longer than the expected 3 months post-transplant as well.

This afternoon was the first time since transplant that Benji expressed discouragement because of all the setbacks. We were glad he was able to express his feelings, but after Allen and I talked and prayed with him, it wasn't long before he returned to his normal self (which is almost never complaining about his condition or asking why he has to go through this.) He's quite a kid!

I stated above (and had posted on FB), "I know Satan wants to discourage us but by the grace of God we will stand strong.” Just after posting that this morning, God provided the following encouragement for me in my devotional:

Deuteronomy 31:8 (NLT) 8 Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.

And out of the reading:
“If you find yourself enduring difficult circumstances, don’t lose hope. If you face uncertainties about the future, don’t be anxious. And if you become discouraged with the direction of your day or your life, don’t despair. Instead, lift your thoughts and prayers to your Heavenly Father. He is a God of possibility, not negativity. You can be sure he will guide you through your difficulties and beyond them….far beyond.”

“The most profane word we use is ‘hopeless’. When you say a situation or person is hopeless, you are slamming the door in the face of God.” ~Kathy Trocolli

I also received a note of encouragement from an obviously insightful young lady, as to why Benji may be struggling the way he is. (Talking about the story of David) “…he was the least of his brothers and the weakest. God used David to show the world his strength. God is using Benji to show you, your family, and everyone else, His strength through every surgery, every flare, everything that…Benji goes through.” Good stuff Ashley!

Thank you Lord for encouraging me with these words today! And thank you prayer warriors for continuing to hold us up in prayer! We love you all!!!

Until next time….

A little note about our third son Cory and how he showed his compassionate heart for his brother last evening; he wore Benji’s #10 shirt at his basketball game. The picture of Cory in Benji’s jersey brought tears to my eyes!

Tuesday, February 5, 2013

Written Monday evening:
I’ll try to catch up on updates tomorrow, but because I spent the entire evening (between interruptions) reading to Benji, I didn’t have time to get to it. Once again, the thirst issue has become a huge thing and he had to shed tears a few times today, out of the deep desire for a drink and not being able to do so. (I can’t even imagine how hard that would be!) I figured it would be good to keep him distracted, so I asked him if he wanted me to read more out of Big Mountain, Bigger God to him and he nodded his head. It was uncanny how many times it felt as if the book could have been talking about us and our journey. All the medications, treatments, inner workings of hospitals, separation of family, etc, etc, were things we have experienced ourselves. I found it interesting when it talked about how agitated Austin was after waking up on the vent and his frustration at not being able to communicate. (Did we write this? lol) Near the time Benji finally fell asleep (around 1:30 a.m.), we got to the part where it talked about Austin’s struggle with extreme thirst, post-transplant, and the desire for ice chips etc.☺ I think it’s been really beneficial for Benji to hear he’s not alone and that other people have experienced exactly the same things and struggled with the same things he has/does. Of course the emotions and challenges Duane and Cindy (the parents) struggle with, also very closely mirror our own, and it’s been very good for me to see how others have dealt with similar experiences.

I’ll be back tomorrow as quickly as I can get to it, but I’ll just say briefly, if you are waiting to hear the results of the bronch and heart catheterization, we won’t get the bronch results till Tuesday afternoon but the heart catheterization results were normal. (One more thing to be thankful for!) Also, the current plan is to try to remove the vent by morning. Yay! Pray we will be able to do that.

Written Tuesday evening:
So yesterday Benji had a couple big things happen; he had his 4th bronch (in which they get biopsies and sputum samples from his lungs) and a diagnostic heart catheterization. He’d been on the vent for more than 48 hours and had done quite well with it; however, beginning on Sunday afternoon, he began talking about how thirsty and hungry he was. They had started his g-tube feeds again, but those had to be stopped at midnight Sunday because he had to be NPO (nothing by mouth), for the procedures on Monday. By the time they took him back for his bronch early Monday afternoon, he was struggling so badly with feeling hungry and thirsty that he told Allen if he wasn’t able to be taken off the vent that afternoon, he wanted to be sedated until they took it out. (Can’t say that I blame him!)

Although they didn’t extubate Benji last night, Benji still didn’t have a lot of sedation. They did give him something last night to help him sleep, and because of that he slept about 3 hours. He had a really difficult time sleeping otherwise; I believe he was just too uncomfortable. Very frequently he would tap his fingers to his wrist and pantomime pulling his vent; wanting to know how much longer till it could be removed. Despite all this, he continued to stay amazingly calm and peaceful, up till time of extubation. I have to say, he’s my hero! What an amazing kid he is!

Both the bronch and heart cath went well. The reason they did a heart cath is because they wanted to make completely sure his heart is working as it should. There was some thought that his heart may not have been doing so well before he had gone into respiratory distress early Saturday morning. After the heart cath was finished, the doctor came out to talk to us and said all his numbers looked normal. However, they may keep him on some type of heart meds for a little while yet, just so his heart doesn’t have to work so hard if his other organs run into trouble.

We really don’t know if it has anything to do with this or not, but we noticed some changes in his body temps around the same time they started giving him the meds to help his heart. For about the last two weeks, there have been numerous times the nurses have struggled to find a temp on Benji and when they did, it was typically in the 35°–36°C range (95°-96.8° F). Sometimes it was as low as 34.9°. His arms and legs were nearly always cold to the touch, though he usually said he wasn’t cold. Benji has always been quite warm-blooded, and usually likes his room very cool; in addition, he typically has a fan blowing on him. He is almost never cold!

Since transplant that has changed. He would have these huge swings from being cold enough at times to make him shiver, to extreme hot flashes. I kidded him that he was as bad as a menopausal woman.☺ Since Saturday morning, Benji has had very few drastic hot/cold swings; his skin is warm to the touch and his temps are running in the normal range (which is 37°C.) In actuality, the two may have nothing to do with each other; I just thought it seemed to make logical sense that the meds may be making the difference.

Back to the bronch; as I stated above, immediately afterward, the doctor said the lungs and suture site looked great, but we didn’t get the results of the biopsy until this afternoon and the bacterial infection results won’t come back for a while. The feeling of relief when you hear the words, “There are no signs of rejection,” is incredible! These are the words we heard again today! Thank you once again Lord, for providing us with these positive, uplifting, joyous results! And thank you for giving these doctors and healthcare workers the wisdom to know and understand so much about the human body, that something like a lung transplant is even an option! Thank you for giving us caring, compassionate doctors and nurses to work with as well!

(By-the-way, we are very impressed with the transplant team here at SLCH. We’ve been working closely with them since Benji’s transplant 5 weeks ago, and the better we get to know them, the more we like them and have confidence in them. They have also been wonderfully accepting and receptive of our input into every situation, and we greatly appreciate that.) We pray God continues to give them the wisdom they need to figure out Benji’s “complicated case”.)

The second joyful event today was being able to extubate Benji again, which was done around noon. As soon as the vent was removed, Benji rasped to me the words, “Ice chips!”☺ Within about 45 minutes, he was allowed to have ice chips, though it was a while longer before they could restart his feeds and give him liquids. Just before I left the hospital to come back to the apartment tonight, Allen had just returned with the drink request Benji had made for the first time, in the middle of last night: sparkling grape juice. Today, after he was able to talk, he had whispered that he’d like me to buy a bottle and he’d pay for a second one. I told him it was okay, I’d be happy to buy both!! I wish I would have had some champagne glasses there to celebrate with him!

One of Benji’s former nurses at Riley came to see us today (she’s not been there for four years, but we’ve kept in touch). Lisa drove here from Carmel, IN with her friend Audrey and after coming up to see Benji, Allen and I got to enjoy eating lunch with them. I haven’t seen her in a long time and it was really good to see her again. Again, we are so blessed with so many people who care about and are praying for Benji and us!

It has been another stressful few days and God has again carried us. And, we are again so grateful for God’s mercy towards us. We have done ABSOLUTELY NOTHING to deserve these blessings, but for whatever reason, God has seen fit to honor our and your countless requests and cries to bring Benji out of another perilous time. We do not know what the future holds, or how God will ultimately be most glorified; but we are grateful for every moment we continue to have Benji with us. At the same time, we continue to believe that God has a plan for Benji on this earth and we look forward to seeing how he will use Benji in the future, to bring honor to him!

As we’ve spoken of before, we don’t understand what God’s plan is, or why Benji has had to experience some of the things he has, but maybe it is for reasons such as this. Last night, Benji’s nurse (whom was VERY nice, but I don’t believe is a Christian), was frequently in the room while I was reading to Benji. At one point she asked what book I was reading, because she’d heard lots of books read to kids on PICU, but never one like this. She said she thought it would be helpful for her to read it, to get a better idea of how things look from a patient/parent perspective. It gave me the opportunity to tell her that the book is about this family’s faith journey, while experiencing something similar to what we’re going through (only worse) and how they saw that God is bigger than any of the things they faced. It also gave me the opportunity to share some of own faith journey with her and how we believe God loves each one of us more than we could ever imagine and that he ultimately has a plan for each one of us, even when we may not understand what that is. I was also able to share some of the ways we have seen God work in our lives and how he is carrying us through these most difficult times. At the end, I offered to get her a book, which I intend to do. Please pray for this sweet gal.

We again are so grateful for the masses of you who are so diligently praying for Benji and us. Our church at home has started a round-the-clock prayer vigil for Benji (for an indefinite amount of time) and I’m hearing of other churches doing similar things. Hearing these types of things is extremely moving and brings tears to our eyes! What a blessing to have so many family, friends, acquaintances and strangers storming heavens gates with their requests on Benji’s behalf; many times, when we don’t have the words or are too exhausted to do so ourselves. May God pour out his blessings on all of you who are so sacrificially giving of yourselves on our behalf! Thank you, thank you, thank you! If you are someone who has never believed in the power of prayer, may I sit down with you and share a few things?☺

Until next time….

Monday, February 4, 2013

I’ll try to catch up on updates tomorrow, but because I spent the entire evening (between interruptions) reading to Benji, I didn’t have time to get to it. Once again, the thirst issue has become a huge thing and he had to shed tears a few times today, out of the deep desire for a drink and not being able to do so. (I can’t even imagine how hard that would be!) I figured it would be good to keep him distracted, so I asked him if he wanted me to read more out of Big Mountain, Bigger God to him and he nodded his head. It was uncanny how many times it felt as if the book could have been talking about us and our journey. All the medications, treatments, inner workings of hospitals, separation of family, etc, etc, were things we have experienced ourselves. I found it interesting when it talked about how agitated Austin was after waking up on the vent and his frustration at not being able to communicate. (Did we write this? lol) Near the time Benji finally fell asleep (around 1:30 a.m.), we got to the part where it talked about Austin’s struggle with extreme thirst, post-transplant, and the desire for ice chips etc.☺ I think it’s been really beneficial for Benji to hear he’s not alone and that other people have experienced exactly the same things and struggled with the same things he has/does. Of course the emotions and challenges Duane and Cindy (the parents) struggle with, also very closely mirror our own, and it’s been very good for me to see how others have dealt with similar experiences.

I’ll be back tomorrow as quickly as I can get to it, but I’ll just say briefly, if you are waiting to hear the results of the bronch and heart catheterization, we won’t get the bronch results till Tuesday afternoon but the heart catheterization results were normal. (One more thing to be thankful for!) Also, the current plan is to try to remove the vent by morning. Yay! Pray we will be able to do that.

Sunday, February 3, 2013 7:07 PM CST

Saturday & Sunday update
I had every intention of updating this last evening, but I had barely started writing before I began falling asleep (I hadn’t slept at all the night before). So, the first part of Saturday’s update is at the bottom of Friday’s update and the last part will be on Sunday’s. ☺ By the way, I really try hard to update this every day, but when we have a crisis or on the weekends when we have a lot of company, it’s really difficult…so I just do the best that I can.

My sister Rose, her husband Jason, and their four children, Malaina, Jalen, Micah and Sophia arrived around 10:30 Friday evening (my brother Steve’s son, Landon also came with them); but since it was so late, they didn’t see Benji Friday night. After they arrived we were talking about how great Benji had done that day and how this is a great time to be visiting. Just as I settled down to update CB, I received the call that Benji’s SATs were dropping, which resulted in him needing to be intubated again by Saturday morning. I was so disappointed that he wouldn’t be able to enjoy his cousins being here and may possibly not even remember they were here. We didn’t even know initially if they should see him but before they left, they each came to the door to say hi and he woke to wave at each one. We were so happy when he told us today that he remembered them being here.

We’ve discovered with each intubation that Benji really doesn’t need pain meds and sedatives, so the length of time he’s been on them has gone down each time; this time he had none after intubation which is the reason he remembers them being here. We heard after the first intubation how unusual that is, but I came to realize today how impressive and incredibly rare this really is. Nearly all patients here need to be sedated because the vent is so uncomfortable and they instinctively want to pull them out. Seeing Benji, you wouldn’t have a clue that was a problem. He is COMPLETELY calm! The doctor today mentioned how amazing he is with it and how comfortably he communicates (as best he can) with us. He said Benji’s demeanor on the vent is “quite a tribute to him (Benji).” Benji’s nurse just told me that she thinks she can only remember one other patient whose hands haven’t needed to be strapped down while vented. We are grateful for this gift and we give God the credit for Benji's amazingly calm and peaceful spirit!

Benji seemed different yesterday than the other 3 times he was intubated; as well as the last time he was recovering from respiratory failure. We sensed some vulnerability and maybe more of a sense of his own mortality? He asked me to read to him; he also asked me to sing a number of times and when Jason and Rose were in the room, he motioned for us to sing. He didn’t care to be alone either, which is very unusual for him. One time I asked him if he’s ok if Allen and I go downstairs to get something to eat; he nodded yes. So I asked him if he doesn’t mind being alone; he shook his head no. I pressed him a little and asked if he was SURE he was ok with it; this time he used his back-and-forth motion with his hand to indicate that he wasn’t sure if he was ok with it. At one point he indicated to me that he wanted to hold my hand. I was so happy to do that and sat by his bed for a while, just holding his hand and stroking his arm or leg. He was also exceptionally expressive of his love for us and others. I thought it was so sweet….when Jason and Rose were in the room the first time (and we didn’t know whether or not the kids were going to see him), we asked Benji if there was anything he’d like us to convey to his cousins. He made the sign language hand gesture, “I love you.”

This is kind of random, and I can’t connect it to anything else, but there was a particularly interesting thing that happened early yesterday morning. I had been reading from Big Mountain, Bigger God to Benji and in there it was telling about a medication that Austin needed to be on, called Milrinone. I have come to know the names of TONS of medications over the years, but this was a new one for me and I was trying to figure out how to pronounce it. Just after that, I was outside the room talking to the doctor and he told me they were going to give Benji a med called Milrinone. ☺

Last evening, our son Tyler and two of Allen’s sisters (Wilma and Rose) arrived with Benji’s uncle Sylvan, who has been here every weekend since transplant. Sylvan and his wife Connie don’t have any children of their own and they are kind of like second parents to our boys; however Connie didn’t come along this week because she wasn’t feeling so well. Again, Sylvan stayed with Benji for the night so Allen and I could get some much needed sleep at the apartment. That was a HUGE blessing Sylvan. Thank you so much! I also love what I am seeing in Tyler. Since transplant, I have seen an exceptionally compassionate spirit in him and when he’s in the room with Benji, he’s the first one to jump if he sees Benji needs something, even if it’s helping with one of his many (messy) stools.☺ We are all learning and growing through these experiences.

When I came in this morning, Benji looked amazing! He was sitting up in his bed reading. Sylvan had gotten a clipboard with paper and pen last night, so he could communicate more easily; this has been quite helpful. Tyler and I got a kick out of him. Tyler was explaining to Benji that he and Cory won’t be able to be here next weekend because they’re going to the IU/Ohio State game. Benji tried to communicate something to us but we couldn’t figure out what he wanted so I gave him the clipboard. He wrote, “By then, I’ll be drinking!” hahaha He’s showing a sense of humor.

His response to not having a drink this time is also different. It seems since he’s alert, and this time so obviously at peace, he has rarely asked about having a drink. Yesterday, he asked me when he was going to be able to get the vent out. I hated to tell him that it wouldn’t be for at least a couple days because I didn’t want him to be disappointed. His response was a simple nod, indicating that he understood what I had said. I’ve not heard him ask for a drink one time but this morning he did write a note asking us not to drink or talk about drinking in front of him. Bless.his.heart!

He has been awake all day today and very communicative. One thing we’ve noticed is that each time, after being put on the vent, he has progressively been stronger and has recovered more rapidly each time. They’ve been weaning him off the vent all day and at this point, he is doing the majority of the breathing on his own. We are sure hoping he’ll be able to move back to 7W by tomorrow night, after his bronch and diagnostic heart catheterization. If we can’t move by then, hopefully he can at least be extubated.

We met with the doctor this evening, and he showed us a graph that was quite revealing and that had seemed to give him an “aha” moment. It was a line graph of Benji's albumin levels. There were two major spikes on the graph, and both of them coincided directly with both of his episodes of respiratory failure. They believe the blood protein is directly related to those events and are now planning to check his protein levels every 8 hours, to give them a better idea of how much albumin to give him- without giving him too much. And if you recall what I said earlier, there’s always a direct connection between the amount of drainage and his blood protein/albumin levels. We hope this is a direct answer to all the prayers asking God to open the doctor’s eyes and to give them wisdom.

Oh, and DO NOT LET ME FORGET! Benji’s ammonia level today was 35!!! Yippee skippee!! That is the lowest it has been since he had the “ammonia crisis”. We PRAY and HOPE this is the end of the crisis moments and Benji can continue to improve. Despite the three critical episodes he’s had, and the steps backward he has taken, I believe I have seen signs of him progressively improving overall; certainly strength wise.

I am just ready to leave and go back to the apartment for the night; Allen is watching the game with Benji, while rubbing his feet. Having his feet rubbed is something Benji has really seemed to enjoy lately and Allen frequently does that for him. Allen is such a caretaker and loves to do this for him. He is an AMAZING dad!

I’m sorry to sound like a broken record, but there are only so many ways you can show appreciation and say thank you; but we are again so grateful, first of all to God for again being so merciful to us and secondly to all of you who are lifting us up in prayer! Blessings to you all!

Until tomorrow….(when I hope we have more good news!) ☺

One more cute little story: Before Sylvan left, he was telling Benji bye, and I just mentioned how wonderful it would be if the next time he comes, Benji would be home. Benji put his two hands in the air and with his fingers, made the "quote sign". After a few questions, we discovered he was pointing out that the apartment wasn't really "home". :D

Saturday morning (Friday night), February 2, 2013 1:17 AM

(This first part was copied from my FB post at 1:16 a.m., Saturday morning)
Benji is not in crisis yet, but please pray with us that it doesn't become that. I'm at the apartment and as I was preparing to update Caringbridge to tell you all what a great day Benji had, I got a call from Allen saying Benji's being moved back to PICU for closer monitoring. He's had to go back on o2 (2 L) and a chest ex-ray showed he's got some fluid on his lungs again. We're very discouraged and I'm quite frustrated with the doctors who earlier this week seemed to be in too big of a hurry to remove the one chest tube. This is the exact reason why I cautioned them numerous times not to be too hasty.

Some of his cousins came tonight, including a few who he's been the closest to over the years. I was so hoping seeing them tomorrow would help cheer both him and them! Please pray that his stay in ICU would be short (like overnight), that he could enjoy his time with his cousins tomorrow and that God would miraculously remove all that fluid in his chest. If that fluid could be removed without needing to re-insert the chest tube, it would be AWESOME!

It occurred to me a few minutes ago that maybe God is testing me to see if I really meant what I posted on CB last night; that I was trusting God with Benji's life and releasing him to God. I am trying to do that and even thinking about the fact that God loves Benji even more than we do and wants only the best for him, does bring comfort and peace. At the same time, I just as strongly believe that God wants us to fall at his feet right now, pour out our heart's desires and ask him to make Benji well! And if all of these setbacks are not just related to the physical and there is some type of spiritual warfare going on here, then in the name of Jesus, we ask that Satan be bound and not allowed to continue his path of destruction!
(End FB post)

Benji did have a good day today, and we were so hoping we could continue down this path. His ammonia levels were down again from 176 to 153 and we SO HAPPY to see those headed back down. He was sitting in bed reading a book relatively early this morning. He again had no nausea and actually conversed with us. The best thing was that we actually got a smile and slight laugh out of him early this evening while visiting with a couple from our home area. Elwood and Chris Miller shocked us when they suddenly showed up in the hallway outside Benji's door but it was good to see Benji feeling good enough to appreciate their company! This evening Allen posted a picture on FB of him sitting in bed on the computer. And now this...... Please, just pray......

Lord, I release Benji into your hands right now. I know that you love him more than either I or Allen ever could and I know you know what is best. I will choose to trust you God, with whichever direction this goes. I believe you are good and faithful, even when things don't go the way I wish they would. I also believe you want your children to come to you with not only their needs, but their desires as well. So now Jesus, my desire is that you heal Benji; specifically right now, remove that fluid from his lungs. Cause him to have a decent night's rest and be able to enjoy seeing his cousins tomorrow! Give the doctors wisdom to understand what is happening and to make the right decisions. And Lord, we pray that whatever happens, your name would be lifted up and glorified. That especially people who don't know you or believe in you would see the the magnificence and greatness of who you are. That they would be drawn to you through this situation. And if it pleases you, I ask that your name be glorified through Benji's miraculous healing! Lord, if this is a spiritual battle, I bind Satan in the name of Jesus from continuing to wreak havoc with Benji's life. I love you and know how much you love me and are hurting with me right now. Thank you Jesus that you have promised to never leave us nor forsake us and I am depending on you for the strength I so desperately need right now, in my deep discouragement. Your will be done Jesus....

Update at 11:30 a.m. on Saturday:
At 6:30 this morning, there was no longer an option and Benji was re-intubated. It ended up being a near replica of 10 days ago, except this time we (Allen and I and the docs) were a bit more optimistic that he would pull through this crisis.

I'm not so sure Benji thought he would pull through though. He was no longer able to talk by the time I got back over here to the hospital, but the last things he had whispered to Allen before being unable to do so were, "Where are Aaron, Tyler and Cory?"; "Where are Jason & Rose and the family?"; and "I love you guys."

Not long after I arrived, Benji attempted to tell me something. His motions were that of a choir director directing music, so I asked him if he wanted me to sing to him again. He nodded yes, so again, I sang, beginning with Great is thy Faithfulness and then many more. One that I especially appreciated, and sang numerous times was, Be still and know that I am God. The song has three verses, and each verse repeats one phrase over and over. The first is the same as the title of the song; the second verse is, I am the God, that Healeth Thee, and the last, In Thee oh God, I Put My Trust. As soon as I started to sing, he closed his eyes and seemed to relax.

After I had sung for a while, he motioned to me that he wanted me to read to him. I asked if he wanted me to read out of Big Mountain, Bigger God, or out of the Bible. He shrugged his shoulders so I started out reading some out of the book then read lots of Scripture to him. He really seemed at peace.

So here we are; back in our tiny PICU cubicle. Benji is beginning to wake, and he's not in any pain. Though the standard treatment after intubation is to sedate and give pain meds, Benji has previously done so well without them that they're not giving him any. This will hopefully lessen the amount of time he needs to be on the vent.

Again, we don't understand what God has in mind; we certainly have not asked to travel this especially bumpy road, Maybe he just needs us to be a light for him on PICU, a little longer. We pray we are faithful to do so!

Thursday, January 31, 2013

We have some good news to tell you about tonight; but we also have a continued concern and prayer request. The good news is that Benji had ZERO nausea today!!! Yaaayyyyy. Thank you Jesus for this improvement!! It’s amazing what a difference being nausea-free makes in his countenance. We are actually having conversations with Benji- some of which he initiates, and he’s showing interest in things. He asked me to bring a series of books from the apartment, (that was sent in a wonderful care package from our church), and he began reading the first book in the series this evening. It’s quite an improvement for him to show an interest in anything, especially reading.

Benji’s strength has also improved, as evidenced by him being able to get himself out of bed and taking the few steps to the commode by himself. He’s reminding me more of how he was after first having moved onto 7W- the first time.

The concern is still the liver and specifically the ammonia level, which was up to 170 again today. This of course, makes it difficult for Allen and me to not be fearful, but again, the liver doctors still don’t seem to think things are out of control and they feel confident things remain manageable. At the same time, they are still trying to figure out why the level is continuing to rise. The blessing in all this, is that even though his ammonia level is this high, he has no signs at all of disorientation or any effects on his brain. We are just praying he doesn’t get to that point and that his liver will be healed!

To help with the ammonia, they have put Benji back on the Laculose (the laxative that binds toxins and carries them out of the body through the stool). We feel good about this decision, but we’ve been so happy that he’s not had diarrhea or loose stools for the last few days and now they’ve gotten very frequent and loose again. I’m just hoping the continual stools don’t cause him to lose strength again. (Sometimes it feels like this will never end and we’ll just keep going in circles forever!)

Last week the doctors in PICU believed that the extra protein Benji had been given with his TPN was what caused the spike in his ammonia level. Though Benji is has not been getting the extra proteins, he’s still been getting the basic TPN. Yesterday we learned the extra proteins given with the TPN are amino acids and that there are also amino acids in the basic TPN which has not been discontinued. They’re now suspecting this may be contributing to the ammonia problem and though they are discontinuing the TPN, they don’t want to do it immediately; so they are weaning him off slowly.

Another seemingly minor problem is that the protein levels in his blood are again lower than they should be so he’s again receiving doses of albumin- a blood protein. For unknown reasons, it appears that, for Benji, a side effect of receiving platelets and blood proteins is uncontrollable shaking. During these times, he reminds me of someone with Parkinson’s.

Possibly related to the lower levels of blood protein, is the fact that he has been leaking from the site where one of his chest tubes was removed this week. We’ve been told that if it doesn’t stop, he may need to have that chest tube re-inserted. If they have to do that, I’ll be very frustrated because one thing I stressed numerous times before they removed this chest tube, was that I wanted them to be sure he was done draining before removing it, so they won’t have to put it back in. It felt to me that with all the problems he’s had with draining, they were being just a bit too hasty in pulling it. I’m just hoping the albumin doses will take care of this problem and he won’t have to have it re-inserted. They did a chest ex-ray today and it fortunately doesn’t show any buildup of fluids in his chest cavity.

Tonight, as I continued reading from Big Mountain, Bigger God to Benji, the following jumped out at me. “We release Austin into your hands, Lord and we thank You for today, and every day that Austin is with us. We look expectantly to you for your healing, whether it is physical healing now, for another chapter of life on this earth, or eternal healing in your kingdom. In all things may your will be done and your ultimate purpose accomplished.” And a bit later, “Once again, Father, we release Austin to you…. Your will be done.”

I had to ask myself, can I really say this? Have I really released Benji? Yes, I do ultimately want God’s will to be done, and I believe he does know what’s best for each of us; however, somehow when I pray for healing, it’s difficult for me to include the part of that prayer that refers to “eternal healing”. It seems like doing so indicates “giving up” on God healing Benji’s earthly body. I have no doubt that if God chose to take Benji home to be with him tonight, though it would be excruciatingly difficult, I would accept it as being God’s will and would not become bitter towards him. However, as I read this tonight, it hit me that I so want to hang on to Benji and keep him with us here on earth, that I’ve not said those words or anything like them. Talking about “releasing Benji” also feels like I’m giving up. (In fact, as I was writing this I realized that is exactly what it means. Releasing Benji to God, means ‘giving up’ my will in exchange for God’s will.) Tonight I want to publicly say, “Lord, Benji is yours (as well as all of my boys). I so desire his earthly healing however, I DO trust you with him and I am releasing him to you.”

And now, I'm asking you not to let up...we need to continue, as many of you have been, to pray diligently for Benji's recovery. And I thank you SO MUCH for the diligence with which many (or most) of you have been faithfully asking God for Benji's healing.

Love to you all,
Until next time….

P.S. Now that Benji’s doing better, I can relax better and I think I finally caught up on my sleep. Last night, into today, I slept for nearly 12 hours straight! ☺

Wednesday, January 30, 2013

Last night was my night at the hospital and we had a pretty good night, after Benji finally got to sleep. He’d been given something to help his nausea yesterday and we think that’s what made him sleep a lot of the afternoon. Having slept so much during the day, he wasn’t able to fall asleep as quickly as we wished last night; so to help him sleep, I read to him for about 45 minutes till he fell asleep around 1:30 a.m.

A few months ago Mom had given me a book to read and I hadn’t yet read it, so I decided to start reading it to Benji last night, hoping it might help him sleep. The name of the book is “Big Mountain, Bigger God”, by Duane and Cindy Mullet. From what I’ve read about the book and what I’ve read so far in the book, it’s a story about their family’s faith journey through their struggles, while going through things very similar to what we are experiencing. Two of their children had heart transplants due to a genetic disease. Following is a bit from an intro to the book:

Where are You, God?
Why us, Lord? Why our children?
If You can heal, Lord, why don’t You?
God, how can we trust You when things don’t seem to make any sense?

These questions have riddled the lives of the Mullett family for several years.

Boy, can we relate! What a perfect time to be reading this book! As I began reading their story it struck me that we have it quite easy compared to some of the things they have gone through; plus they had two children that went through this process. From what I’ve read so far, I would certainly recommend the book.

Benji’s day was again fairly quiet but we seem to be seeing improvements a little at a time. He again had less nausea today; that is such a blessing and we pray it continues! He walked 70 feet this morning; mostly by himself but of course with someone walking with him and another person pushing his pole with all his IV’s, feeds, etc. After that he sat on a chair for a while and drank some raspberry tea while I read more to him from the book. I came to the apartment this afternoon but Allen sent me a picture this evening of Benji sitting over in our “sitting area” of his room, watching the IU game again. These are encouraging signs, but we have yet to see the Benji back that we took a picture of 9 days post-transplant. Those 10 – 12 days where we ran into one problem after another, really seems to have set him back. His affect/appearance is still quite unanimated and glum. We cannot wait to see him smile again!

Last evening I asked for prayer for his liver. This is still a great concern for Allen and me! Today, his ammonia levels were quite high again; back up to 126. When we heard we immediately became concerned at what this might mean but we have been assured that it’s not unusual for ammonia levels to rise and fall and that they’re not that concerned about today’s level. In fact the liver docs said it’s better to not monitor the levels daily, for the exact reason we dealt with today- unnecessary worry. Of course we shared our concerns and asked if they still recommended this despite what we’ve just been through. They said they did and they also told us that they feel quite confident that his liver will calm down and they will be able to manage it. It was good to hear that they’re not all that concerned, yet because of last Friday’s experience, we would all feel much better if his liver would just be healed!

The doctors frequently talk about his “unhappy liver” and they told us that no one had been aware his liver was as unhappy as it was when he went into transplant. The major trauma his body went through with the transplant put too much stress on his liver and that without help it wasn’t able to function properly. I guess you could say it had system overload. One of the things our Riley doctor had told us last Friday night was that they are still continually learning how CF affects the liver and from what I understood her to say, there are times that the liver suddenly becomes a big problem despite never having shown any previous signs of major damage.

Despite the fact that the docs don’t seem alarmed, they are at the same time trying to figure out if there was something in particular that may have caused the spike. One time when he vomited last evening he also threw up half a capsule of the med he takes to help the ammonia level; it is a slight possibility this may have had something to do with it. The capsule wasn’t replaced because it was outside of the 15 minute window, after being administered. (It is their policy not to re-dose, if it’s been longer than 15 minutes since it was given.) In addition to the ammonia level, Allen and I also thought today that the whites of his eyes were possibly a bit more yellow than before, but that may just have been because he was sitting in light close to the window. Just continue to pray that we can stay on top of not only this ammonia thing, but the liver function as a whole!

Another thing we’re working on is trying to get Benji to eat more by mouth- maybe we should consider getting out that piggy bank from 2004, when we paid him to eat.☺ One of the things they want him to do prior to discharging him is get his weight back up and be eating by mouth.

A couple weeks ago, the doctor told us that they couldn’t say if Benji’s recovery up to that point (one week after transplant) was normal because there is no “normal” recovery post-transplant. Today however, in our weekly meeting with the team, he said that has now changed and Benji’s recovery has crossed over into the “out-of-normal” range. Meaning, the things he’s dealing with are outside of the typical things they expect to deal with in the few weeks following transplant; they say he’s “complicated”. In fact, Benji has now been hospitalized one week longer than the expected time after transplant, and he’s really not as well as he was 9 days out. I guess we just really have no idea how long we might have to stay there yet, but we would sure love to get him out of the hospital and back to the apartment!

I continue to choose to believe that Benji got those “perfect- fitting lungs” for a reason. And that God has plans for Benji outside of that hospital and will continue to bring him through. Please join us in praying for that!

Thank you and until next time…

Tuesday, January 29, 2013

The last couple days have been fairly uneventful, which is definitely a good thing!!! We’ve had enough drama to last us for a life-time!

Benji got to move back to 7 West on Sunday afternoon. (7W is the unit on the floor where post transplants go- it's not an ICU unit) We were so happy and our new room is awesome! Seem like a palace compared to the cubicles we had on the ICU wards. When it was time for him to move, they rolled his bed over to just outside the room; then, with a lot of help, he walked into the room to his bed. (This was the first he’d walked in a week.)

Monday he had one of the remaining two chest tubes removed. (He started with 4) This is a HUGE step forward and very exciting. However, the nausea has returned full force and is our biggest concern currently. Monday was really rough for him but the doctors are trying very hard to find a way to deal with this. It’s not only miserable for him; it also affects his ability to get better. Were happy that Benji did have a better afternoon today (Tuesday), with much less frequent nausea and vomiting; just praying this continues.

Benji’s liver is not well and is definitely something you could pray about. The doctors need to be very careful, because his liver is pretty fragile and they can't always treat him medically like they would if his liver was healthier. His liver already has some scarring which can create problems both now and for his future. They say the scarring is irreversible but it’s not if God wants to heal it! :)

There was one other improvement I saw tonight which excited me. He was able to get up to the edge of his bed, by himself and walk the couple steps to the commode, also by himself. Any little improvement such as this is exciting. ☺

We were blessed to have my brother Jerry and his wife Corine and their three daughters (Jasmine, Reygan and Keesha) come to visit. While Benji is still not able to fully enjoy his visitors, it's good for him to be able to see his family and friends. Jerry and the family got here last evening, in time to come up to see Benji a little, then I took them back to the apartment for the night. Today, they came back up to see Benji again before leaving. So great to see them and have them here!

Thanks again for your prayers and support. I keep drifting off as I write, so I'd better stop before I fall totally asleep. ☺

Until next time….

Sunday, January 27, 2013

If you wanted to quickly catch up on the latest, I apologize for the length of this post and you may be disappointed. However, this post covers three days and there was sooo much that happened in that time; and since I’m as long-winded as I am, it turned out to be VERY LONG! (I should have had Allen write it; he could have probably done it in 3 paragraphs! ☺)

Thursday night thru Sunday:
Thursday night, Allen stayed at the hospital with Benji and I went to the apartment to sleep. Friday morning around 8:00, before I had left the apartment, I got a call from Allen saying something was wrong with Benji. He was disoriented and didn’t even recognize Allen. Of course this freaked me out; I told him I’d be right there and then sent off another mass prayer request. As I was getting things together to go to the hospital, I was crying out to God, “Please God, why does he have to have THIS now? Can’t you just let him enjoy these new lungs of his for a little bit? Can’t he just get a break? As I way saying these words, I had a check in my spirit and had to tell God how sorry I was; that Benji had actually been given a lot of breaks and we are were so grateful for what all he had done for our family and especially Benji.

After getting a few things together, I skipped my shower and headed for the hospital. Before I arrived, I got another call from Allen stating that now Benji had recognized him, but had called him Allen. When Benji was asked, who Allen was, he responded that he was his dad. This helped me feel a bit better. When I got there, I was immediately able to see Benji’s speech was slowed and he was kind of “mush-mouthed”. His eyes had a vacant look to them but when I asked him if he knew who I was and he said, “Mom.” (HUGE sigh of relief) Now, looking back, Allen says he first noticed some signs beginning Thursday afternoon after I’d left, but he had blamed Benji’s “grogginess” on the fact that he had just taken some Benadryl and Phenergan. Throughout the night, Benji began to get more and more fidgety; he tossed and turned all night long. He simply couldn’t get comfortable; and he was beginning to say and do some things that concerned Allen.

Soon after I arrived, a neurologist came in to check on Benji. Some of Benji’s responses were decent, some were terrible; none were great. When asked to stretch his arms out in front of him and hold his hands up like he was saying “stop”, he couldn’t do it. His hands were limp and he couldn’t keep his fingers up. His physical motions reminded me of a drunken person who had been asked to touch his finger to his nose. It was nearly impossible for him to hold any kind of conversation, and if he tried to put a sentence together, he often couldn’t finish it, because he couldn’t remember what he had been saying. While he had previously been able to sit up in bed on his own, get his own drink, etc., that had now become impossible. He couldn’t tell his left from his right. His brain just couldn’t tell his body what to do. It was quite alarming to witness!

Just after that, the PICU doc came to tell us that they had received some of Benji’s lab results and that Benji’s ammonia level was 209; when I asked her what was normal, she said, “Yours and mine are probably 10!” I have since found out that anything from 10-50 is considered normal. Either way, 209 was obviously a huge problem! For some reason, Benji’s liver was not processing the ammonia; this is what would enable him to eliminate it from his body through his urine. The doctor felt very certain that this was what was causing the problem and that by immediately starting him on something called Laculose, the problem should be taken care of fairly easily. Laculose is a laxative that binds toxins, (ammonia is a toxin), and gets rid of it through his stools. We were relieved that it was such an easy fix; we just thought it would take some time to get it out of his system.

Throughout the afternoon the fogginess was always there, but the amount of confusion came and went. We, the nurse and docs. were constantly asking Benji questions like what his name is, does he know where he’s at, what year and month is it, when is his birthday, how much is 7 plus 12, etc. At times he could answer the questions correctly, after thinking about it for a bit and other times he just couldn’t come up with the answer. The docs and nurses would hourly shine a light in his eyes to see how his pupils responded; this gave them an indication if he was worsening. Even through Friday night, when he was the sickest, his eyes never acted inappropriately; we were able to take comfort in this fact.

Typically, when I would ask Benji if he knew who I was, he would answer Cindy or Mom; however I believe there was a time or two, when his mind was just too foggy to figure it out. One memorable incident I had with him was when I went up to his bed, held his face between my hands and said, “I love you Benji”; he responded, “I love you too.” Another thing he did a number of times, (which encouraged me each time he did it), was count to 3 when we were ready to pull him up in bed. It was almost like a reflexive thing. It really wasn’t possible to carry on any kind of conversation with him; in fact it was difficult for him to even complete a sentence. He had one short period of lucidity on Friday afternoon and was able to give immediate answers to our questions; this happened immediately after a good stool and the nurse and I looked at each other, both thinking maybe he was starting to pull out of this. Unfortunately that was not the case.

One thing that Benji struggled with the entire time, (Thursday afternoon through very early Saturday morning) was extreme restlessness. He just could not relax and was constantly fidgeting. From 11:00 a.m. -3:00/3:30 p.m. on Friday there was not one time that I was able to sit for more than 5 minutes, without him needing something. He wanted to sit up, lie down, move to his side, get up in the chair, go to the bathroom, and on and on. His hands and arms were usually moving. Quite frequently he would cry out, “help”, in a kind of pleading way. Later on in the evening, when his condition had worsened, he was even more agitated and began to pull at tubes and wires. We were told that if his condition worsened, he may even become physically feisty. Once they started him on the Laculose, he was constantly going to the bathroom; sometimes as often as every half hour. We were happy to see him go to the bathroom though, because the more he went, the quicker he could get the ammonia out of his system.

The only time that he was remotely still was around 3:30/4:00 in the afternoon, when he was able to rest for a little. All day he’d frequently been saying, “I just want to sleep”; he wanted to sleep, but was too restless to do so. At this time I decided to crawl into bed with him to try to help calm him; so I perched myself on the side of the bed that didn’t have all the tubes and wires, and began stroking his arms and head. This seemed to calm him down some, and when he did start to move or cry, “help”, I would just tell him it’s ok, he should try to go back to sleep. He was actually able to sleep rather fitfully for about an hour to 1 ½ hours.

Obviously, since Allen was with Benji all night on Thursday, he hadn’t gotten much sleep, so he’d been at the apartment all day, trying to catch up a little. Friday night would have been my turn to stay with Benji, but because my brother Jim, his wife Shirley and their daughter Megan were on their way here, I had planned to go back and stay at the apartment with them overnight. However, when Allen came to relieve me, I told him there was no way either of us could do what I had been doing all day, for the entire night long. I suggested I go back to the apartment, get the beds made and do a few other things till Jim and Shirley got here; then, I’d sleep a little and come back to relieve him around 3:00 in the morning. When I left, I felt pretty sure that, though it would take some time, Benji was going to be okay.

A couple hours after I arrived at the apartment, Allen called me again to tell me Benji was worse and in fact the evening shift doc had just come and spoken to him about Benji’s condition and she had sounded quite ominous. He wanted me to come back to the hospital to talk to her. I was confused, because none of our previous docs had spoken like that and our day shift doc had sounded quite sure he was going to be okay. So, on my way back to the hospital, I called Benji’s doc from Riley, who’s been following his case from there, both through the docs and through my text updates. I needed to speak to someone I trusted to find out if this was something we really needed to be concerned about. She told me she’d spoken to Benji’s pulmonologist from down here that afternoon and while the ammonia levels were concerning and that yes, this could be serious if his liver failed; she was still quite hopeful for Benji. She also felt good about the steps they were taking. She couldn’t really tell me more than that, because she didn’t have any further information.

I arrived at the hospital and as soon as I got to the room, I asked to speak to the doctor. While I was waiting, I went up to Benji and asked who I was; I believe that time, he couldn’t answer me. I’m having a difficult time remembering what happened when; I just know it was immediately evident to me that he had gotten worse. When I did get to speak to the doctor, I couldn’t believe what she was telling us. She was very straight forward (which I wanted her to be) however, she offered us very little hope for Benji’s recovery. She said that based on how his condition had worsened, she was very concerned that the meds were not going to fix the problem and that the liver was going to shut down completely. Despite the Laculose he'd been taking all day, his ammonia levels had actually risen; and though the bilirubin and liver enzyme test results had actually improved, those were not necessarily a good sign, based on his level of confusion. (I guess once the liver starts to die off, test results are sometimes low simply because the functions being tested no longer work properly.) She said at that point, those numbers really didn’t matter, it was how he appeared clinically and that the next 12 to 16 hours were critical; if during that time he did not stabilize or get better, his liver would most likely die off and there was absolutely nothing they could do to stop that. We were also told we may need to be making a decision in the near future about re-intubating him, if his brain got bad enough that it quit telling his lungs to breathe.

I was stupefied! I asked her why she is the first doctor who had mentioned this to us; they’d often spoken to us about the fact that he could very likely have some problems with his kidneys and liver, but that these problems were easily manageable. She told us if the day shift doc had been there at that time, she’d have told us the same thing, based on the fact that he was worsening. I asked her if she would be willing to call our Riley doc who we’ve known for 9 years, and explain the situation to her. I’d just been speaking to her, and I think because of our history, I’d be able to better understand what’s happening from her. The doc was very gracious and said she’d be happy to call her.

As she walked away to call Dr. H, our Riley doc, I felt kind of numb; I was weary from lack of sleep and the events of the past week and I think I went into a bit of shock at what she had just told us. However, I told Allen that I was not going to get too concerned until after I’d spoken to Dr. H; that maybe the PICU doc just had a pessimistic personality and that she just always gave the bad side of things. Allen however, was quite emotional at what we had just been told, so we went to a private room to be alone. As we sat there waiting for Dr. H to call, I started to go through all the reasons why this doctor must be wrong; why would our day shift doc seemed so optimistic, etc.

When Dr. H called, we eagerly answered (on speaker phone), hoping she would tell us it wasn’t as serious as the PICU doc had indicated. However, she wasn’t able to do that. Dr. H is such a kind, soft spoken person; and has a very gentle way of speaking; however, she will also tell us what we need to know, even if it’s not pleasant. She said that the PICU doc had given her some information she hadn’t previously had and that based on the trajectory of Benji’s decline, things were indeed very grave. However, there was no way to tell at that point whether or not he could pull through. She also agreed that the next 12 to 16 hours would tell us which direction we were headed. She said that while she was very impressed with the knowledge of this doc, her personality may be the kind that is just a bit blunter than some, but that she couldn’t disagree with her assessment. She also didn’t seem to be able to come up with any positive signs to give us some hope. I recall asking her something like, “So you’re telling me that if Benji doesn’t stabilize or improve over the next 12 to 16 hours, he’s going to die.” Neither Allen nor I can remember her exact response, but whatever she said, she confirmed this to be the case. She then told us there was nothing we could do for Benji tonight so we should both go back to the apartment and get some sleep because we were going to need our strength the next day. (At the time she said that, I recall thinking we might need to do that, but after what she told us had really soaked in, I texted her and asked her (rhetorically of couse) how I could ever leave Benji to go sleep, when these may be some of the last hours I had with him.”)

After we hung up, we went about requesting urgent prayer. However, before we did that, we needed to tell the boys and other family members what was going on. Cory was at home by himself, so we called Uncle Sylvan, told him the situation and asked him to go to the house to be with Cory when we told him. In the meantime, we called Aaron and Tyler and told them at the same time, through a conference call. Tyler then said he would go home to be with Cory as well. It was so difficult to call Cory and tell him. I so wanted to be able to be there to cry with him and give him a hug, while we told him, but obviously, we couldn’t. Of course we would have liked to do this with Aaron and Tyler too; it just felt to me as if Cory was the most vulnerable. He’s just 20 months older than Benji and they have been best buds all their lives, except when they were fighting. ☺) The boys wondered if they should come down and we just didn’t know what to tell them. We didn’t know what the next 12 to 16 hours would hold or which direction this would take; however, we told them that they shouldn’t expect Benji to recognize them if they came. I recall Allen told them that he doesn’t know what to say about Benji, but he’d sure love to be holding each of them right now. Within a short time, we received word that Sylvan and Connie were heading this way yet that night and bringing the boys with them.

We then called my parents and since Jim and Shirley were on the way, we called them as well. We asked them to let the rest of our family know. Sylvan made sure Allen’s family knew. And then we sent out the request for prayer. I recall still feeling numb as I was writing the text. I felt exhausted and discouraged, and had this vague feeling that this time Benji was not going to pull through. This was the prayer request I sent through text and on FB:

“I can’t believe we're needing to come to you again like this. We don't understand what God is doing, but this may be some of the worst news we've had yet & maybe the direst need for prayer so far. Benji’s condition has worsened in the last 6 hours; he is more disoriented & there is more concern that his liver may not be able to make it thru this. We have been told that within the next 12 to 16 hours, we'll have a better idea where this is headed, IF in that time his liver function doesn't stabilize or if it gets worse, then he will probably go into liver failure & there is evidently nothing that can be done for that. Once again, we need God to intervene. ....We just don't understand"
(By the way, I apologize for the post on my FB timeline; I was posting it on my phone, which was operating very slowly; I had copied it from a text and when I pasted it on FB, I couldn't tell if it was posting because it didn’t show up. Evidently I pasted numerous times because it repeated the same thing over several times. I didn’t catch it till people had already started to comment so I just left it.)

At that time I didn’t know it, and I didn’t actually see it till the next morning; however, when I got on FB the next morning I was absolutely OVERWHELMED at what I saw! As I scrolled down through my News Feed, I saw post after post after post, requesting prayer for Benji. It was UNBELIEVABLE!!!!!! Not only were our FB friends praying, many of them were also asking their friends to pray; and we know many of them did even though they had no idea who Benji was. I also know the request went out on various church prayer chains. You all's support left us simply speechless with gratitude! Soooo many of you have been there to support us all along and at times like Friday night, when we felt so weary, discouraged and exhausted, and our faith was shaken, you took up the fight for us; many of you believing that God would pull Benji through. My friend Ohilda expressed what you all did so beautifully; her comment on my FB wall was this, “Sweet Sister, we are here for you to come to us, to be your Aaron and Hur, when you can't find the strength.” Thank you all! We have no doubt that the massive prayer support we have received is why Benji pulled through once again!

After making the calls and sending out the prayer requests, we went back to Benji’s room. When we got there, they had just returned from taking him upstairs for a scan of his brain, just to make sure that looked okay. I actually found myself thinking it might be good if they found something, because at least then, there might be something they could do. (Those results did come back negative.)

By now, Benji seemed more disoriented than before and at the moment, no matter what question you asked him, his answer was Benjamin Eash; and he would answer before we could get the full question out. “Do you know who I am?”
“Benjamin Eash”.
“No, you’re Benjamin Eash; who’s this?”
“Benjamin Eash.”
“Who’s that?”
“Benjamin Eash”
Help, help”

His eyes didn’t lock with ours; Benji was not in there. He had now become much more fidgety and had begun pulling at things… it was really indescribable. Not knowing what else to do, as soon as they were finished getting him settled, I decided to try crawling into bed with him again. I crawled in beside him and began stroking his arms and head, while whispering prayers over him. He didn’t calm down like he had before. I began to sing to him through my tears and breaking voice:

Great is thy Faithfulness, oh God my Father. There is no shadow of turning with thee. Though changest not, thy compassions they fail not; as though has been, thou forever wilt be. Great is thy faithfulness; great is thy faithfulness. Morning by morning new mercies I see. All I have needed thy hand hath provided. Great is thy faithfulness, Lord unto me.

Summer and winter and spring time and harvest; sun, moon and stars in their courses above. Join with all nature in manifold witness, to thy great faithfulness, mercy and love. Great is thy faithfulness; great is thy faithfulness. Morning by morning new mercies I see. All I have needed thy hand hath provided. Great is thy faithfulness, Lord unto me.

Pardon for sin and a peace that endureth, thine own dear presence to cheer and to guide. Strength for today and bright hope for tomorrow; blessings all mine with 10, 000 beside. Great is thy faithfulness; great is thy faithfulness. Morning by morning new mercies I see. All I have needed thy hand hath provided. Great is thy faithfulness, Lord unto me.

I repeated this song over and over. It seemed to soothe him some and me as well.

When Jim, Shirley and Megan came, Allen went down to meet them and bring them up to the family lounge. These dear people sat in the family lounge the entire night, just so they could be here with us. On Monday night when I was here by myself, God definitely carried me, but I had no idea what I had missed and how comforting it is to have family support at a time like this. I met them out in the family room; it was soooo great to see them and feel their embraces, but there was such a great sense of sadness permeating everything! We prayed and talked for a while; one of the things I remember saying to them was, “I never thought to be concerned about his liver!” After speaking to them a little, I asked them to come back to the room to see Benji. I would love to see their written version of what they saw and felt when they saw Benji. I know they couldn’t believe it! Benji again looked at them vacantly and when we asked him if he knew who they were, he couldn’t tell us. In fact, as I recall, he wasn’t really saying anything sensible at the time, and about all he was saying was,"help". It was really sad. Just before leaving the room, I saw Shirley came around to the side of his bed; she laid her hand on him and I could tell she was talking to God about Benji.

By now it was about midnight and I had told Allen there was no way I could leave Benji tonight, so why doesn’t he go back to the apartment, try to get a little sleep, then maybe towards morning, I might be able to catch a few winks while he was with Benji. I was not in clothes that were very comfortable, so I decided to go back to the apartment, change and get a few things before coming back to spend the night. Allen and I were both already exhausted and it was so nice to have Shirley here to go with me.

As we were returning to the hospital, around 1:00 a.m., we received a call from Jim telling us that Allen had wanted him to call me and let me know that though we couldn’t get our hopes up too high; he had seen some signs of improvement in Benji. Jim and Megan had gone into Benji’s room with Allen and while Benji didn’t say he recognized Jim, Jim did see something in his eyes that connected with him in a way they hadn’t before. Benji did recognize Allen this time and he was also able to put a few sentences together; he asked what time it was and said he wanted a drink. This was the first he’d been able to form a cohesive sentence since the afternoon. It was amazing what that did for our spirits! A glimmer of hope! In order to also encourage the boys, I called them to let them know that things had not gotten worse and while cautioning them that this may not mean anything, I told them that we had seen some encouraging signs. (I found it interesting when Sylvan told me today that Cory had not slept up to that point, but after receiving that call, he said Cory was able to relax and fall sleep.) Close to 2:00 a.m. on Saturday, I sent this text out to family. “We’ve got a ways to go yet, but want to encourage you a little. Things have not gotten worse and we have in fact seen some slight signs of improvement. Praying…..praying…….”

When I returned to the hospital, I walked up to Benji and said, “Benji, do you know who I am?” He said, “Mom.” (Incredible feelings of joy!) Allen left then to try to get some sleep; (Jim and Shirley being there with me made him feel ok about leaving). As soon as I could, I crawled into bed with Benji and began stroking his arms and head again. When I asked, Benji said he wanted me to sing; so I again sang Great is thy Faithfulness, but I also sang some other hymns I could think of: My Hope is Built on Nothing Less, When Peace Like a River, Holy, Holy, Holy, and a few others. Again, this seemed to have a soothing effect on him.

Through the next hour I continued to see improvements and around 3:00 a.m., while Benji was using the bedpan, I said, “Benji, I’m going to go out in the waiting room and talk to Jim and Shirley a little.” I wasn’t expecting a response, but I heard, “Wait! They’re here!?” I couldn’t believe it! I told him that yes they were waiting in the family lounge all night, just to be with us and wasn’t that nice! “Very nice!” Oh. My. Goodness! I so excitedly went to the lounge to tell them. Shirley then went back to the room with me and when we walked up to Benji, I asked him if he knew who was with me; he nodded and said Shirley! I’m guessing neither Shirley nor I have ever been so overjoyed to have someone recognize us. Shirley walked up to the bedside and playfully said a few things to Benji and he responded appropriately!

Over the previous couple hours, he had increasingly been asking for a drink. Since there was a possibility of being intubated, he had been taken off anything by mouth again. He was becoming frustrated and at one point, he snapped at me, which utterly delighted me because he was engaging with me and holding a type of conversation. He was saying how badly he wanted a drink and so I started to tell him how I was looking forward to when he got out of here and could drink all he wanted. Before I could get it all out, he snapped, “I don’t care about later! I want a drink now!!!” ☺ They did allow us to swab his mouth, but that was all. As I saw him improving, I began to be less concerned about him needing to be intubated, so I didn’t care if Benji sucked the sponge when I swabbed his mouth. Finally, around 3:15 a.m., I asked Benji’s nurse if he wasn’t well enough that he could have ice chips; he said he’d check and a few minutes later told us that we had the green light to give Benji ice chips! It’s amazing how small things like that seem so wonderful in these kinds of situations! I went to get the ice chips, and when I came back in the room, I asked Benji if he could feed them to himself; what an incredible feeling, to see him haltingly take the glass and feed himself those chips! Just hours before, his brain wouldn’t have known how to make his body do that! While he was doing this, the nurse came into the room to do his hourly eye check; he stood for a little and watched Benji feeding himself then said, “I don’t have to check his eyes, if he’s doing that, he’s doing fine!” As the night wore on, Benji continued to improve bit by bit; it was so exciting to watch!

The boys and Sylvan and Connie arrived at the apartment around 4:00 a.m.; at that time Allen woke up and read the couple texts I’d sent him- one was telling about having recognized Shirley and the other was a picture of Benji feeding himself ice chips. I should have Allen describe the feelings that washed over him as he read those messages. He texted, “Oh my word! PTL! PTL!” Then, “Is he able to communicate with you?” My response, “Easily!” (Benji was easily communicating, but his mind was still a bit foggy and sometimes it took a little for him to think what he wanted to say.) Allen asked if I wanted him to come over and I told him if he would, I’d be ready to go back to the apartment to get some sleep. I was no longer worried that these might be some of Benji’s last hours! Oh my! What a change in feelings from 7 hours prior. However, while we were so jubilant, we still had to reserve some of our joy, because we knew there was a possibility he could regress. There was no ammonia test ordered until 8:00 Saturday morning, and until we got those results, we were afraid to be too overjoyed.

At that point, I went back to the apartment, praising God for Benji’s improving health; kissed my other three boys; opened my computer and cried as I saw the massive amount of posts from people asking their friends to pray for Benji, promises to pray and words of support and encouragement all over FB; I posted a cautiously optimistic update on FB and then I went to sleep. In that FB update I included this: "We certainly do not understand God's purposes in all this but we are once more overwhelmed with his graciousness towards us! We pray we are faithful to however he wants to use us to bring glory to him through this time! As incredible as this whole ride has been, we are weary and we are so grateful for the legion of you who are continuing to stand in that gap for us! You have continued to do so faithfully, and we are so grateful! Though we still don't know what the future holds, we thank you once again Jesus for carrying us to this point!"

A little later in the morning, Sylvan, Connie and the boys went over to see Benji. What a joy that Benji was actually able to recognize his brothers when he saw them! (And Sylvan and Connie as well!) Sylvan and Connie then stayed with Benji, and Allen came back to the apartment to try to get a bit more sleep. He told me about something he’d experienced that morning. I first want to explain a couple things before going into that. The amazing thing that had happened to Allen occurred between Benji’s 8:00 a.m. ammonia levels and the test taken later in the morning . (We were happy to hear that the result of the 8:00 ammonia test was 176; down from 214 but of course, we wished it would have been lower.) What Allen experienced was between this time and the next ammonia test which was around noon:

Allen told me that during the night as he was lying beside Benji, he had prayed that God would give him the ammonia that was in Benji's body, and let him take it for him. Later that morning, around 8:30, Allen had been shedding some tears and needed to blow his nose. When he did so, he said his nose burned and the stench of ammonia filled the room. He thought it was really strange at first, until a little later when he recalled what he had prayed. At the time, he shared with Jim and Shirley who were still here, that he believed at that moment, God had taken the ammonia from Benji. In fact, Benji’s next ammonia test came back at 85!!!! We were speechless when we got the results and I posted this as part of my FB update. “We don't know why you continue to pull us through one valley after another Lord, but we will be faithful to tell of your wonderful works!!! Praising our Savior, all the day long!!!”

It’s been amazing! Benji continued to improve all day Saturday and Sunday and he is stronger and looks better now than he has for 10 days. The catheter was removed today and since he's again able to get up with help, we're back to using the bedside commode instead of the bedpan. We also got to move off of PICU and back onto 7W. His ammonia level was 69 today. Wow!!! Thank you Jesus! The chest tube drainage is WAY DOWN and there’s a possibility they may remove the right one in the next couple days. The left one is also way down, but is still putting out too much to be able to remove yet. However, with as well as he appears to be doing, I wouldn't be that shocked if he would be able to be discharged within the next week or so.

After receiving the news about Benji, my parents and Dale decided they also wanted to come down yesterday (Saturday). What was really nice was that our friends Topper and Marilyn Knepp (who are also friends of Mom and Dad) were also planning to come down, so they rode together. I’m aware that there are many new people reading these blogs and you may not have any idea who Dale is. Dale is my 56 year old, down syndrome uncle, who has been living with my parents since Grandma passed away in 1997. The grandchildren have grown up with Dale being more like an uncle than a great uncle and no one could be more loved than Dale is by our family; the grandkids adore him and he adores them as well. He has had such a soft, caring spirit for Benji over the years and has been expressing that even more over the last 6 months or so, as Benji’s health has declined. It was so special at Christmas when he expressed that during a time of prayer for Benji. When he prayed, it was difficult to understand what all he was saying, but some of the things we could understand was when he said he was glad Benji was out of the hospital and then he looked at Benji, and in his own style but clear as could be, said, “Benji, I love you very much!”

[Note, a cute story from today: Dale’s speech is very difficult to understand; however, most of the family can understand much of what he says. (It also helps if you can understand Pennsylvania Dutch, because Dale learned both languages as a child and tends to mix them up. While he understands both languages, he speaks mostly English; the problem is, he will often mix in a Dutch word because he doesn’t know the English word for it. For instance, the lady he was speaking to at the hospital today probably didn’t know what he meant when he was talking about his “henching”; the Dutch word for gloves. ☺]

It was so fun to see Dale’s reaction when he first saw Benji and Benji spoke to him. When I thought through it, I realized that he had ridden all the way down here with Mom and Dad the night Benji had his transplant; he knew something major was going on with Benji but because of how Benji looked after transplant, we were concerned it might be too traumatic for him to see Benji this way. So he went back home, without ever having seen Benji. Over the last several weeks, he’s constantly heard people talking about and praying for Benji and then twice during this last week, he picked up that there was something desperately wrong with Benji. All this time he hadn’t seen Benji. When we took him back to see Benji yesterday, he stood at the door looking in. I went in and asked Benji if he saw who was here. He looked up at Dale and said, “Hey Bompbom.” I can’t recall how it started, but somewhere along the way that has become a term of endearment between Dale and the grandchildren. When Benji said that, Dale threw his arms out in front of himself and said, “Beeeenj!”, with a sound of surprised relief and delight in his voice! I told him he can go over to Benji and he went right over to him and stroked his head while telling Benji how much he loved him. It was quite touching.

In the evening, Sylvan and Connie offered to stay with Benji, so we could go out to dinner with Mom, Dad, Dale, Topper and Marilyn. Then, Sylvan also stayed with Benji the whole night so Allen and I could both go back to the apartment and get a good night’s sleep. Thank you Sylvan and Connie; that break was so nice and we love that you have the kind of relationship with all of our boys, that they and we can feel comfortable doing something like this!

And today, Benji's ammonia levels were..... 69!! WOW!! Amazing!! Incredible!

What an incredibly exhausting, emotional, uplifting and joyful week this has been, as well as one where we have again learned more about what it means to cry out to God from the depths of our soul; needing something only he can give!

I will finish by posting what I posted on FB Saturday night. “We don't know where to begin! God evidently has a plan, not only for Benji, but for our whole family. As the song my sister Rose posted says, "We will remember"! May we NEVER forget to sing of the mercies God has poured out on us and of his miraculous interventions, time and time again!”

Saying goodnight with a heart again overflowing with gratitude that the life of our son has once more been spared.

Until next time….

One other thing I was planning to write about was what our school did on Saturday; but by the time I was finished writing this around 3:00 this morning, I forgot to include it.

Our small school (Clinton Christian) has been so amazingly supportive through all this and has been a HUGE blessing to us! I don't know how it all came about, and all we know are bits and pieces of things we've heard and pictures and videos some have sent us or posted on FB; but I believe Chantel Shetler was the one who initiated wearing purple in support of Benji, at Saturday's basketball game.

Both Benji and Cory are on the basketball team; Cory plays for varsity and Benji is on the JV roster, although he's not been able to play all year. Since Cory came down here Friday night, he had to miss the game on Saturday; this made what he was facing even more difficult, but I'm sure what the school did for him and Benji helped to ease that.

I'm told the bleachers were full of purple; many of the gals had painted their faces with purple paint and Benji’s jersey number, which is #10. All the teams, Jr, High, JV and Varsity also wore purple ribbons in honor of Benji; and Madison Yoder, one of the Varsity starters, wore Benji's #10. They also honored Cory, by placing his #14 jersey on the team bench. At some point in the evening, we received a video, showing all three of the opposing school's teams (Lakeland Christian) and our school's teams standing in a circle in the middle of the gym floor, praying for Benji and Cory. Incredible!

As I finished writing this, I was made aware of a blog posted by Rhonda Schrock; she is an extremely gifted writer and also a mother of four boys, who must have been at this game. Again, we are running out of words at the amazing, increasing cascade of support, prayers and encouragement from every direction! This is the website address for the blog and I'm also going to place the link below.
http://www.rhondaschrock.com/rhondas_blog/2013/01/28/what-heaven-looks-like/#comment-10550

Sunday, January 27

Saturday, January 26, 2013 10:13 PM CST

There’s no way I’ll be able to stay awake long enough to fully update this page tonight, so for now, I’m just going to say that Thursday night and all day Friday, we were dealing with a very disoriented Benji, (at times EXTREMELY so)! In fact, there was a time on Friday morning that he didn’t even recognize Allen. We were told this was probably because his ammonia level was so high (they’d sky-rocketed, from 76 on Thursday to 200 on Friday); but they seemed pretty confident this could be easily managed by medications. However, the confusion grew steadily worse, and by the time the evening shift doctor came on, we received news that prompted the following FB posts . There are many details yet to fill in, but I wanted to get these main points on CB, for those who don’t have FB. (I hope to have the complete update done tomorrow.)

Friday, 8:44 p.m.
I can’t believe we're needing to come to you again like this. We don't understand what God is doing, but this may be some of the worst news we've had yet & maybe the direst need for prayer so far. Benji’s condition has worsened in the last 6 hours; he is more disoriented & there is more concern that his liver may not be able to make it thru this. We have been told that within the next 12 to 16 hours, we'll have a better idea where this is headed, IF in that time his liver function doesn't stabilize or if it gets worse, then he will pry go into liver failure & there is evidently nothing that can be done for that. Once again, we need God to intervene. ....We just don't understand

Saturday, 5:00 a.m.
What a Mighty God we serve! We are cautiously optimistic because we know that there is still a possibility of regression if the elevated ammonia levels can not be kept under control; however, Benji has been making remarkable improvements overnight! When Aunt Shirley, Uncle Jim and Megan got here around 9:30, he had no idea who they were. Around 1:30, when Jim came into the room, he seemed to recognize him and had begun to show other signs of coherency. When Shirley came into the room around 2:45, he easily recognized her and exchanged a few words with her. As other times, the longer the night has gone on, the more concerned he has become about wanting a drink. (They were holding him off in case he needed to be reintubated) He finally got his ice chips at 3:00 (at which time we had a rejoicing session in the room) and he was even able to coordinate his movements well enough to feed the chips to himself! (Something he had not been coordinated enough to do for a good 24 hrs!) We certainly do not understand God's purposes in all this but we are once more overwhelmed with his graciousness towards us! We pray we are faithful to however he wants to use us to bring glory to him through this time! As incredible as this whole ride has been, we are weary and we are so grateful for the legion of you who are continuing to, (as Ohilda Hernandez Bombardier put it), be our Aaron and Hur, and stand in that gap for us! You have continued to do so faithfully, and we are so grateful! Though we still don't know what the future holds, we thank you once again Jesus for carrying us to this point!

Saturday, 12:54 p.m.
We don't know where to begin! God evidently has a plan, not only for Benji, but for our whole family. As the song Rose posted says, "We will remember"! May we NEVER forget to sing of the mercies God has poured out on us and of his miraculous interventions, time and time again!

Benji is currently resting relatively well. Certainly better than he has for the last 2 days. I will update more later on CB regarding the state Benji's brain had deteriorated to from the ammonia overload, but we just need to express our utter gratitude for where he is now, compared to then!

Ammonia levels were drawn at 8:00 and we were happy to see they were down from 200 to 170; at least they were going the right direction!

And now I need to tell you a little story. Last night during the night, as Allen was laying beside Benji, he prayed that God would give him the ammonia that was in Benji's body, and let him take it for him. Around 8:30ish, Allen was still in the room with Benji and needed to blow his nose. When he did so, his nose burned and the stench of ammonia filled the room. He shared with Jim and Shirley that he believed at that moment, God had taken that ammonia from Benji. We just received news of Benji's latest ammonia levels. 86!!!! We are speechless! Truly so!! We don't know why you continue to pull us through one valley after another Lord, but we will be faithful to tell of your wonderful works!!! Praising our Savior, all the day long!!!

Before laying to down to try to get a little sleep this morning, I got on FB and was absolutely OVERWHELMED while scrolling down through my News Feed; post after post after post, requesting prayer for Benji. It was UNBELIEVABLE!!!!!! You all's support has left us simply speechless with gratitude! As I stated in my earlier post, Soooo many of you have been there to support us and at times like last night, when we've been too weary to continue to raise our arms up, you have been our Aaron and Hur and held our arms up for us! (That was SUCH a beautiful way to express it Ohilda Hernandez Bombardier!)

Allen and I are currently at the apartment, hoping to catch up on some much needed rest. Uncle Sylvan is with Benji.

Saturday, 10:06 p.m.
Quick update on Benji: We won't get any more results on ammonia levels till tomorrow morning; but, clinically, Benji has continued to improve all day. Finally by this afternoon he was able to get some much-needed sleep. (and Allen and I got a little as well.) He's very calm and seems totally himself! We were so blessed to have my brother Jim and his wife Shirley and daughter Megan Troyer here with us over night. They arrived around 9:30 last evening and sat at the hospital the whole night, to be with us as needed. They were a true God-send!

Allen's brother Sylvan and wife Connie drove down through the night with our other boys, then after sleeping at the apartment a while early this morning, Sylvan and Connie came up to stay with Benji while Allen and I got a little sleep. Bless his heart, Sylvan will be staying with Benji through the night again, so Allen and I can actually both sleep at the apartment AT THE SAME TIME! (first time in a month) :) We're praying for a quiet night and a good night's sleep for Benji; and for us as well. I will try to get more of the details of the last couple days on CB tomorrow. Thank you for your continued prayers!

Wednesday, January 23, 2013 9:56 PM CST

Before we start: When I sat down to write this Monday night, I had a difficult time putting anything together; everything was a big jumble. I had had no concept of time that day and sooo much had happened. So, in order for me to be able to try to describe the day in any cohesive way, I needed to get it clear in my mind. In order to do this, I put together a timeline of events, as best I could, based on charting, times of phone calls and texts, and memory. I’m going to be using that to give you a better picture of what our day was like on Monday. The beginning of the update is what I had started to write on Monday, but a few paragraphs into it I go into the timeline of events.

Monday evening:
What a day! I hope I never have to experience another like this! In case you don’t yet know, Benji went into respiratory failure this afternoon and we were really afraid we were going to lose him! We’re thanking God over and over for being merciful to us once again and sparing Benji’s life!!! Thank you to the multitudes of you who were interceding for us today!! Facebook and Caringbridge have been an amazing tool the last several months! It has created a massive network of people praying for our Benji! I’m amazed at how many of you (both on CB and FB) have become personally invested in his well-being! We are SO GRATEFUL!!!!!!!!!!!!

I don’t even begin to know where to start with today. My mind is still kind of fuzzy…. trying to put it all together. Thankful that Allen and the boys made it down safely, in 5 ½ hours! (And thank you God for keeping your hand of protection on them while they drove!)

I guess I’ll start with yesterday. Benji was moved to ICU yesterday (Sunday) afternoon. They told us that the reason was because over the last few days he’d come to take more care; this was very true, he had definitely gone downhill. The regular floor was not staffed as well as ICU and they felt it would be better if we were where he could be better monitored. (See yesterday’s update.) Last evening I noticed Benji seemed to be even weaker; his voice and cough were quite weak and he was more than happy to switch to a bedpan instead of having to get up to the commode.

There were a number of things that I saw this morning that concerned me. The first thing was his eyes; they were so dark and sunken- (reminded me of a mal-nourished child.) I’ve never seen them look that bad and it definitely concerned me! I think every time a new person entered the room, I would mention my concern about it. Everyone agreed but no one seemed to know what the cause was; most figured it was just extreme fatigue. There were a number of other things I saw that concerned me, like his increased weakness- which made his cough and voice VERY weak; he was also unable to suck hard enough to drink out of a straw. (This struck me as VERY odd- something wasn’t right!) He also complained of back pain all morning, and later some tummy pain.

Around 11:00, Benji haltingly told me (because it was hard for him to talk), that it hurt to lie on his side. Chest x-ray #1 was ordered, which came back unchanged from the night before. This was kind of when things began to build and became more and more concerning.

Transition to timeline:

Noonish:
Benji’s breathing became more labored and it was even harder for him to talk. His SATS were still in the 90’s, but had dropped to the lower 90’s. I took comfort in the fact that he didn’t need oxygen. The docs were coming around more frequently; it was obvious they were becoming concerned.

12:30 p.m.
It was around this time that I began to sense something was really wrong. He was obviously getting weaker. I pulled the chair up, right next to his bed, in order to be close enough to hold his hand or rub his legs. Not long after this that I began to be fearful about what I was seeing. Tears started to flow, but was glad Benji was sleeping because I didn’t want him to know how concerned I was.

12:54 p.m.
Left the room to cry and called Allen to tell him what’s going on, at which time we discussed whether or not he and the boys should start heading this way. I said I wasn’t sure yet how bad this was going to get; I’d let him know when I knew better. In all our hospitalizations over the years, I only remember one other time that I called Allen to say, I think you should come; and that time it wasn’t a, “you need to come now because I don’t know if he’s gonna make it” call; it was more of a, “I need you with me” call. My fears and tears spilled over and it was obvious to Allen that this was something serious. I ended the call with, “can you send out a request for prayer?” He asked, “Where? On Facebook?” I said I didn’t care where, “Just get as many people praying as possible.”

1:00-ish
• Benji indicated that he couldn’t breathe and put his hand over his left lung and laboriously says (one word at a time) there was something in there.
• Chest x-ray #2 was ordered and the ICU doc and the surgeon came in to check him out.
• Surgeon palpates his chest; feels an air pocket under his skin. Not a pneumo because it’s outside the chest cavity.
• Surgeon expresses concern that it could be an air leak at the spot where the new lungs were connected to Benji. “What happens if that’s the case?” “We’ll discuss that later if we need to.” Didn’t like that answer
• Diuretics were increased, hoping to get rid of more of the swelling
• Began to de-SAT. Put him on 3L oxygen

1:10- 1:30
• All 3 docs huddled outside door conferring
• Benji was no longer talking at all- too weak
• I sent out mass prayer requests through texts and Facebook
• Diuretics were increased to continuous flow

1:24
• Texted Allen, “I think you should come”, then called him.

(The period between 1:00 and 3:00, I was in and out of the room. While out, calling, crying and texting; while in, comforting Benji, being strong for him and praying my heart out over him! )

2:00-ish
• Docs ask to meet with me; show me chest x-ray #2 and tell me his lungs appear to be filling with fluid. (Huge change from x-ray #1!) Ask how serious. If the problem is what they hope it is, it should be an easy fix. They were encouraged that his vital signs were still so good. Said anyone coming into an ER with lungs looking like this, would typically have vitals much worse than his. However, it could be rejection, a viral infection or a problem with the surgery site. If it is the surgery site, he’d have to be opened up again. Was more encouraged after speaking with them; at least there’s a possibility it might be manageable
• SATs dropped to high 80’s.
• Oxygen upped to 4L
• Put him on NPO (no food or water to prepare for sedation)

2:15 – 2:30
• Went out to do some calling and texting. When I came back in the room, his eyes were huge and looked terrified! I asked him if he was afraid. Said he wasn’t. Tried to reassure him.
• Began having a rattle when he breathed
• Doc was in the room much of the time
• Blood gasses and vitals were still good (one thing that kept me encouraged)
• From this point on nurse or doc in room at all times

3:00-3:15
• Motions for me to do some hand percussion over his left lung (did it a few times till he motioned for me to quit)
• CVP not good (should be single digits; hovering in high 20’s)
• Breathing becoming more and more difficult
• SATS drop into the lower 80’s
• Upped oxygen to 5L
• Nurse tries to suction some of the “rattle” out of Benji’s lungs. Stuck a long tube down Benji’s throat; Benji doesn’t even care, just wants some relief. I tell him to think about squeezing my hand as hard as he can while being suctioned. He does; squeezes hard and did great. Suctioning didn’t help much.
• Again asked Benji if he’s afraid; put his forefinger and thumb together, with a slight separation, indicating he was a little afraid
• I’m constantly trying to reassure, comfort, help; becoming very concerned that they might not be moving fast enough

Insert: I want to clarify here, that staff and docs were continually talking, deciding what the next steps would be and carrying them out. I was sitting on the bed with Benji, but we were not in the room alone; there were people all around, in and out of the room, preparing for whatever needed to be done next.

3:30-3:45
• SATs still dropping rapidly, into 70s
• Benji mouths to me, “Am I gonna die?” I try to reassure him, “No Benji, I don’t think you’re going to die. I think the doctors can fix this”…… “But IF something did happen, Benji, would you be ready?” He nodded yes
• Breathing has worsened. Head is now tilted back, eyes rolled to the back. Each breath is a struggle
• CVP is worsening (should be in single digits, is now in the high 30s)
• Is there not something we can do to make him more comfortable?
• Doc begins manual resuscitation, which brings SATs back up
• Temp is dropping

3:45-4:00
• Bipap connected
• Benji’s obviously not draining fluid quickly enough, even with all the diuretics.
• Insert cath. Again, he squeezes my hand to make it through, but barely flinched when inserted
• Cath drained a little, but not even close to enough
• CVP kept climbing

(Note: I didn’t like to talk to Allen in front of Benji, so when I called, I had been leaving the room. At this point, I didn’t want to leave the room anymore, so I called him one more time and spoke Dutch so Benji didn’t understand. From then on I only texted until I had to leave the bedside.)

4:07
• Text Allen: “He looks really bad. Next step is vent. All other vitals are good except fluid in blood. (CVP) Not been strong enough to talk for a while, breathing with rattle. Just before beginning manual resuscitation he mouthed, am I gonna die? How fast are you driving?”
• Was petrified, but at this point still thought they might be able to pull him out

4:00-4:30
• Doc obviously more concerned
• Group of staff beginning to cluster outside the door
• Carol and Rhea come to door (Nurse Practitioner and Social Worker from the Transplant Team- purpose for being there was to support me; another thing that confirmed my concerns)
• Stepped outside, Rhea gave me hug. Surprised myself with the gut-wrenching cries that came out of me as I sobbed on her shoulder. Pulled myself together to go back in to be with Benji.

4:30
• Chest x-ray #3- unchanged
• Now doc tells me blood gasses are no longer good
• Gonna need to put him on the vent
• No longer any confidence that they can pull him out of this
• Doc calls me out to sign permission for bronch. Where do I sign? Just get it done!

4:41
• Get text from Cory: “If Benji’s still awake, tell him I love him.” He was and I did. Sent Cory text, “I told him.” (At the time I couldn't even tell if Benji was able to hear me, but he did and he remembers it.)☺

4:30-4:50
• Begin process of inserting vent and doing bronch
• Was allowed to stay but was encouraged numerous times to step out; thought it may be too much to see
• Wanted to stay in room; didn’t want to be outside wondering what was going on
• Finally left room; needed to cry and didn’t want to do it in there
• Kissed Benji, told him I love him, that he’s gonna be okay and Dad, Aaron, Tyler and Cory are on the way. Don’t know for sure if he heard me.
• Walked outside room and lost it

4:50- 6:00
• My sister called, just as I walk out of the room. Sobbed on the phone to her, “I don’t know if he’s going to make it!” He looks so terrible!” Rattles whenever he breathes!”
• No one is telling me it’s going to be ok and everyone looks worried. (both help confirm my fears)
• Encouraged to go to the consult room where I could be in private.
• Rhea and Carol are there for me; however/whenever I need them
• Go to consult room and call Allen
• Fall on my knees before God, pleading with him to spare Benji’s life
• Need something to comfort and calm me
• Pick up Bible and try to read scripture in Psalms- can’t read because I’m crying too hard. Got Carol to come in and read to me. Praying as she read. Calmed my spirits. At the end said I believe God was telling me he was going to bring Benji through this
• Door opens and I see doctor. “How’s Benji?” “Benji’s doing great!”
• Joy indescribable!!!!! THANK YOU JESUS! THANK YOU JESUS!!!
• Called Allen

I will attempt to explain what happened, but the short explanation is that Benji was in respiratory failure. As I had said earlier, the reason they had moved Benji to ICU, was because they wanted to monitor him while giving him blood protein supplements. They began giving those in pretty good size doses and evidently, the proteins immediately began to do the job they were supposed to do- which was to keep him from draining so much fluid. The problem was, (probably due to his liver and kidneys not functioning properly), his body wasn’t able to get rid of the excess fluids, so the fluids began to build in his unhealed lungs. The result was he began to decompensate, or go into respiratory failure.

When the docs showed me the x-ray that showed his lungs were filling with “something”, they told me that the “the most obvious answer”, was what I just described above. If this was the problem, they said it was an “easy fix.” If it was just a buildup of fluids, they should be able to take care of that simply by increasing his diuretic doses. After speaking with them, I did feel more hopeful, because of the possibility of it being option #1. A couple other things that were encouraging were that they told me if someone came into the ER with lungs looking like this, their vital signs would also be bad; they would expect Benji’s vitals to also be bad, but they were still good. Additionally, he had just had a bronch done last Thursday and the biopsy was negative for rejection and the tissue had looked good.

The problem was no one knew for sure what was going on in his lungs, or even for certain what his lungs were filling with. Any of the other options were much more serious! If it was a leak at the suture spot, that would have meant needing to open him up again and I didn’t know if he was even strong enough to go through something like that. Two other possibilities were an out-of-control virus or rejection; both could have been lethal. At this point, they told me that they were probably going to need to do another bronch, in order to see for sure what was going on down there. However, Benji declined so quickly after that that the first thing they had to do was get him on the vent. Once that was done, they were able to go in with the bronchoscope and see what was going on.

As I saw Benji decline and go into respiratory failure before my eyes, and I watched the concern grow in the docs, I grew less and less hopeful that the problem was actually the one with the “easy fix.” I believe the doctor was feeling the same way. Tuesday morning I asked him how “concerned” he had actually been the evening before. He said, “As you saw, I was quite concerned; until I was able to get in there and see what was going on. Once I saw the tissue looked good, the suture site looked good and there was no mucus, I relaxed.” Because it turned out to be the “simple fix” problem, they were able to stabilize him with the vent, while allowing the diuretics to help his body get rid of the excess fluids. The vent takes the stress off the lungs, and frees up the body to concentrate on fixing the other problems.

I was able to go back in to Benji around 6:00. His eyes were closed and he was resting and sedated; when I told him he'd had a rough time but God had brought him through, he got tears in his eyes. He could hear us but couldn’t respond; it felt a bit like it did immediately after transplant, and yet in some ways, kind of worse. We don’t know for sure how long they’ll keep him on the vent this time, but the doc believes the vent might help him heal.

Throughout the evening people said they felt so bad for me; being here by myself. I know it was God giving me the strength I needed to get through that time, but when I thought about Allen not being here, I wasn’t thinking about how much I needed him. My heart was breaking for him, knowing how difficult it would be for him if Benji didn’t pull through, since he hadn’t felt good about leaving on Sunday. I was also hurting for the other boys; I could only imagine the nightmare of a trip that must have been for all of them- feeling like they were racing time and not knowing if they’d ever get to talk to their brother again. They arrived at the hospital around 8:30, exhausted. We were all so happy to see each other! After checking in on Benji, they went back to the apartment to try to get some sleep. Aside from being exhausted, I feel calm and cautiously optimistic. Thank you Jesus for holding Benji in the palm of your hand and for loving him and us the way you do!

I hope this gives you some idea of the events and feelings from that day. As soon as I can, I want to add some more about my experience in the consult room; how God spoke to me in there and I was able to feel a sense of peace.

I know that some of the things I write are quite personal and many people might not feel comfortable sharing them. What you probably don’t know is that THIS is my journal (my only journal) and my record of what has happened with Benji over the past 8 ½ years. I have always been terrible at journaling (probably because it’s so hard for me to just write a little bit; seems I have to write a book each time☺) so this website has really turned out to be a blessing; not just for those of you who want to know what’s happening, but also for me. If I know people are expecting to hear from me, I MAKE myself do the updates. It has also turned out to be quite therapeutic for me; plus I’ve been SO grateful to be able to go back and read the things we have experienced over the years!
I will post Tuesday and Wednesday as quickly as I can get them done, but because I know people have been waiting for some type of update, I’m going to go ahead and post this now. I just want to make sure you know that Benji is doing great! He was able to get back off the vent this morning (Wednesday); he’s off oxygen, very alert and looks better than he has since the middle of last week!

*********************************************
I mentioned I would share an experience I had with God during this time, you can read about that here. (You'll need to copy and paste the link) https://docs.google.com/file/d/0B8peg8no05m2c2x4UHpMVkNqb28/edit

Following are the remaining updates from this week:

Tuesday:
(This was from my FB post)
Benji had a quiet night; he's been sedated and slept most of the day. His chest x-ray this a.m. showed improvement. He did wake up for a short period of time when his brothers came by. He tried to give Cory a thumbs up and waved as best he could to them when they left. Doc was in not long ago and said his lungs sound great. He has put out 3 liters of fluid today! (that's AFTER deducting all the fluids he's taken in!) Yippee skippee! I've never been so happy to see pee! :) They are really thinking they'll be able to take him back off the vent tomorrow!

I wish I could describe to you, how he is. He's half sedated, so motions are slow and measured. He can see, hear and understand everything; and he can respond. Of course, he can't talk because he has the vent in his mouth, but he can use his hand signals. We find it interesting that he's gone back to pointing to the wrist to find out what time it is, and tipping his hand to let us know he wants a drink. It's just so weird that he won't remember any of this later!

We just can't begin to express the relief and gratefulness that we feel today. Again, this isn't enough, but all we can offer all you wonderful prayer warriors is our thanks!! And you have that many times over! We give God the glory for pulling Benji through! The staff around here is probably tired of hearing us talk about God's work in Benji's life and the miracles we've been experiencing! :)

Wednesday:
Yesterday afternoon Benji was taken off all sedatives and pains meds and they were to be given only if needed. Because Benji had done so well without either one during his two previous intubations, they decided to stop them sooner than they normally would, in hopes that if he was more alert, he’d be able to be extubated more quickly. Though Benji had no recollection of the brothers being there on Tuesday, by evening he was alert enough to understand that they would extubate him in the morning, IF he could keep his respirations up overnight. The problem was that when he would fall asleep, his respirations would drop; so Benji decided he needed to stay awake all night, just to ensure his respirations didn’t fall. (LOL) As Tyler said, it’s good to see that fighting spirit!

Allen said Benji tried all kinds of things to keep himself awake. (Allen had stayed at the hospital for the night.) Once, Benji asked for a wet washcloth to put on his face. The communicating was all done without Benji being able to speak and Allen said he should play charades professionally, since he’s gotten so good at finding ways to tell us what he wants. Again, drinking was a huge thing; he wanted a drink so badly. Around 4:00 in the morning, Allen figured out Benji wanted his phone; and when Benji gave it back to him, he had texted that he wanted mom to bring him some sparkling grape juice when she came in morning. He also had a whole list of other juices he wanted when he could drink again! ☺

Well, he made it, and he was taken off the vent just after 8:30 this morning! When Tyler and I arrived at the hospital, it was an incredible feeling to see him sitting up in bed; totally alert and stronger than I’d seen him in days! His swelling had also declined. I went right to him to give him a kiss, took his hand and sat down on the bed. It was so awesome to be able to sit there with him and talk to him about what had happened two days earlier! He remembers it all and amazingly, doesn’t seem too traumatized! He even remembers my telling him, just before they sedated him that Cory said to tell him he loved him. One thing I had been concerned about on Monday was that Benji would hear me cry and pick up on my fears. I was glad when he told me he hadn’t known I was crying! I haven’t spoken to him about it yet but Allen had asked him if he remembers asking if he was going to die and he said he remembered that as well. I’m looking forward to having more conversations with him at some point, regarding that day. Thank you Lord, for giving me the opportunity to do that!

Benji got rid of another 1 ½ liters of fluid today, so we are continuing in the right direction with that. The chest tube drainage has also decreased GREATLY! Yay!!! The biggest struggle he’s having now is nausea. We are hoping that’s simply coming from restarting one of his meds and that the nausea will disappear in a few days, as usual. If not…. I don’t even want to think about that right now. I just want him to feel better!

Early this evening, we were informed that Benji was going to have to be moved off of CICU and moved to PICU. (CICU is Cardiac ICU and PICU is Pediatric ICU.) They said he no longer really qualified for “cardiac” care (don’t ask me what changed), but that they needed his room for someone else so we needed to move. That wouldn’t have really been that big of a deal; CICU, PICU and 7W are all on the same floor, so we haven't had to move far when we've gone from one to another… the problem was, the room was ridiculously small!!! We’re talking not much larger than an ER treatment room. When we first moved, there was nothing in the room for a parent to sleep on and when I asked if we could have a chairbed, I was told they’d see if they could find one. I found that so odd. I guess from our experience at Riley, I just assumed all hospitals made it a priority to make it easy for parents to stay in the room with their kids. Evidently not all hospitals have done as well with that as Riley has! I did finally manage to get a chairbed, though we had to do some finagling in order to be able to open it up in the room. Perspective is obviously everything because I NEVER thought I’d feel fortunate to be able to have a hospital chairbed to sleep on! ☺

Once again, feeling grateful and blessed by a loving God to have FOUR amazing sons!

Thursday:
Last night in PICU was a little rough. Benji needed his sleep, since he still hadn’t caught up from the previous night. However, hospitals are a horrible place to try to get sleep and ICU’s are the worst. Especially this particular ICU! A number of different things contributed to making it difficult, but let me just say, 7W is looking a bit like a piece of heaven right now! :☺

That nausea is still an issue and we’re trying to get a handle on it; pray that we can do that. It affects so many different things; it makes it difficult to do physical therapy or lung therapy, and both affect how quickly he can get better. I was looking at his little body this morning, it is all covered with poke marks, scabs, scars, black and blue spots, etc. I feel so bad for him; I just with we could get him past this!

Aside from the nausea, most of the day was pretty quiet and Benji slept quite a bit. Aaron, Tyler and Cory stopped by the hospital one last time today, before heading back home. It was so great to see them all together! Looking forward to when we can all be home again!

Until next time....

Sunday, January 20, 2013

It’s hard to believe tomorrow it will be three weeks since we received the unbelievable call that Benji had a donor! Time has really gone very quickly. We’ve been out of ICU for a little more than a week but we’re back there again; obviously this means he isn’t good enough to go “home” yet. We had been told we should expect three weeks, but of course that depends on how well the Benji is doing. Unfortunately, Benji has not been doing quite as well the last few days; but, we don’t believe moving to ICU is as bad as it could appear to be. It seems most of his problems are attributed to the high volume of drainage he is continuing to have, and it has begun causing other problems. Last night was a really rough night; between frequent stools, back aches, nausea and other things, neither we nor Benji got much sleep. I think with the constant care he needed yesterday, overnight and this morning, the nurses felt like they were not well enough staffed to give him the kind of care he needs. On ICU, they can give him the care he needs, as well as monitor him more closely while he’s receiving the protein replacement treatments.

As I stated in yesterday’s update, this seems to have become a vicious cycle that we need to get out of. The more blood he loses, the more proteins he loses; and the more proteins he loses, the harder it is for his body to absorb fluids, which results in more blood loss. (The way it was described to us is that the proteins in the blood act similarly to a sponge, in how they absorb fluids/blood into the body.) His liver not functioning properly does not help the situation either and that, along with the protein loss is affecting his body in a number of different ways. The protein loss weakens his immune system, which obviously creates more problems and the liver dysfunction is contributing to his body not being able to get rid of all the fluids it’s producing. This is causing fluids to build in his body, creating major swelling; in fact, he gained 5 lbs. in 5 days! The current plan is to replace the lost proteins with plasma and albumin; albumin is the most common form of protein in the blood and he is currently receiving some via IV. The treatments for the protein replacement were started last evening with a plasma transfusion (plasma contains proteins, as well as antibodies) and I believe the plan is to continue with these two treatments over the next few days; hopefully after that, other things will begin to improve and we’ll be able to move him back to the floor. (Although we can’t help but feel that needing to move back to ICU is another set-back, -even though they say it’s not, we do feel good about being on ICU. It’s comforting to know he’s being well monitored. However, Allen had been planning to ride home with his family and be there for a couple days before coming back down on Wednesday; leaving here, with Benji in this condition, is never easy for him but today was especially difficult!

I mentioned that he’s not been doing as well; there’s no question he has lost strength, which I believe can be the result of a few different things: first the protein loss in his blood, and secondly, the continued diarrhea. The weakness, in conjunction with the excessive swelling in his body has contributed to him being much less mobile than he had been. His cough sounds weaker than it had and while he had gotten to the place where he was able to get himself up to sit on the edge of the bed,- and even put himself on the commode a few times, it’s now difficult for him to even get himself a drink off the bedside table. I attribute this as much to the discomfort of the extreme edema as I do to physical weakness.

The diarrhea had seemed to be improving by the end of last week, and his stools had begun to form a little more. However, for whatever reason(s), it has gotten worse again. One reason may be because for 1 ½ days they changed his feed, in order to do some testing. After he had to go to the bathroom 5 times in in 6 hours, I asked them to take him off the Miralax and at least TRY to see if that helps. Yesterday was the first day he hadn’t received any, so hopefully that will begin to clear up.
A disappointing change we have seen is that the clear mucus we’ve been seeing from the new lungs is now looking more opaque and a yellowish-brown color; this is a sign of the infection in his lungs. :( And one last thing that is not going in the right direction is the fact that he’s needed to have that “puke bucket” by his bed. I mentioned recently that not needing that has been one of the improvements we’ve seen; because, for most of his life, he’s needed to have one at his fingertips and it was something he ALWAYS had on his bed, while in the hospital. He’s needed that again in the past 48 hours. :( (He previously did a lot of vomiting, often from gagging on the thick, sticky mucus.) I do think that we may have figured out why he is having the nausea. I hadn’t thought about it that one of the antibiotics they restarted him on was the one that usually makes him nauseous. Hopefully, having restarting the nausea medication will take care of that.

The doctors can’t seem to figure out why this is happening, but he’s also developed some severe shaking. He had a bout of it last evening (Saturday), but all day today he’s been shaking quite severely, whenever he moves. As long as he’s laying still he’s fine, but the minute he moves (especially when he gets up), he begins shaking uncontrollably. It seems like he must be cold and his body temp at times is so low it doesn’t even register. However, he doesn’t want any covers and says he’s not cold. The doctor checked him out and because he hasn’t developed a rash and all his vital signs are good, they aren’t too concerned. There’s a good possibility it’s a result of the plasma he’s been given. I guess it’s not that unusual to have some side effects from receiving plasma.

Allen’s family that was planning to come made it down last evening, except Wilma, because she wasn’t feeling well. The others spent the night at the apartment, and then were at the hospital with us much of the afternoon. They were still here when the doctor came in to talk to us about moving Benji, so we had plenty of help packing up the room in order to move. ☺ There are definitely disadvantages to moving back to ICU; the rooms are very small, I can’t use my air mattress, I have to leave the floor to use a restroom, we’re not supposed to eat in the room (“Technically” anyway, - according to the charge nurse last night. ::wink, wink::) and the room is usually bright during the night which makes it more difficult for Benji to sleep. However, like any decent parent, these are things I can easily do without, - as long as Benji is getting the care he needs. One good thing that is different from when we were previously in ICU is that while everyone else still needs to be fully gowned, gloved and masked when entering the room, Allen and I don’t. HUGE improvement!! ☺

I believe this is all for tonight; our specific prayer requests right now are that those protein levels come back up, which could in turn fix many other issues like: increasing his strength, getting rid of the swelling, fighting the infection in his lungs, healing his liver, taking away his back pains (which seemed to be better again today), helping with his diarrhea and the breakdown of his skin as result of the diarrhea, and preventing pleurodesis (which isn’t guaranteed to work anyway and would mean that , even if necessary, he won’t be able to ever get a second transplant.) These are some of the obvious things I can think of. Thanks again and again for your continued support in prayer! God may never have heard anyone’s name mentioned as often as Benji’s over the last three weeks! ☺

Until next time….

Saturday, January 19, 2013 3:08 PM CST

I apologize for not getting this out last evening; I began to write it then got so sleepy I decided to finish today. So, the first part is yesterday’s (Friday’s) update; then under that I include some from today.

I also need to apologize for the misinformation I relayed yesterday. I misunderstood and originally said that there was no infection in his lungs. In fact, he does have some, about which you can read about below. :(

I came back to sleep at the apartment again last night- (two nights in a row!!!☺) I don’t know if it was the two nights in a row or what, but last night was the FIRST night I’ve gotten a complete night’s sleep since Benji was admitted. That felt AMAZING!

Friday:
If you read yesterday’s (Thursday’s) update, you know I was quite discouraged; however, after getting some sleep, I did wake up in a better frame of mind. As I had said, Benji had another bronchoscopy yesterday, in which they did a biopsy of his lungs, primarily to check for rejection and infection. The biopsy results for rejection are rated on a scale of zero to four- zero being the best. Of course we always want a zero; however, even if the results come back a one, they say it’s basically like having a zero because it means the rejection is so minimal, they don’t even change his rejection meds. Benji’s result for rejection was a ZERO!! We again thank you Lord for your graciousness towards us and we give you all the praise for answered prayer! Also, I had gone back to the apartment last evening, while Allen stayed at the hospital, so I didn’t find out till I got here this morning that Benji was able to go back off the oxygen last evening and has been off ever since!! This is definitely another praise!

We were disappointed with the infection results because the preliminary results are positive for AFB. (God has chosen to answer our prayers differently than we asked, but we will choose to praise him with this result as well; even though it’s not what we want.) AFB is the bacteria that nearly took Benji’s life in 2004, and the main one we have been battling ever since. The AFB is the reason Benji was on an IV antibiotic ever since October, 2011, which was also the last time the AFB showed up in his lungs. We were also so happy to find out last week that his old lungs had tested negative for AFB (after they were removed), and it didn't show up in his new lungs either. All of these things combined had indicated the AFB had not transferred to the new lungs and the docs were in the process of verifying a few things before taking him off one of the IV meds he’s been on for so long. We were SO EXCITED about him being able to go off all his IV’s and this made it even more of a blow to hear the AFB had shown up again! Fortunately the doctors do seem quite positive that we will be able to get rid of it with the appropriate antibiotics. This is very encouraging, yet, because of Benji’s immunosuppressed state (which is the same for any transplant recipient); it will ALWAYS be more difficult for him to fight off any infections. It will most likely also mean that Benji will need to stay on IV antibiotics for an extended period of time. :(

I’m not 100 percent positive about this and I want to check with the docs tomorrow to verify it; but I’m pretty sure that unlike his old lungs, once he is able to get rid of the AFB, the chances of him ever getting it again are very minute. The reason I say that is because these bacteria are almost NEVER seen in anyone’s lungs, even Cystics; it’s always been a mystery how they got into Benji’s lungs. The reason we couldn’t get rid of it in his old lungs is because the thick, sticky mucus in his cystic lungs trapped all bacteria, and once it’s there it’s nearly impossible to ever get them out. However, since his new lungs do not have cystic fibrosis, this shouldn’t be a problem.

So, today’s news was quite mixed. The ZERO rejection again was extremely good news, however It was very disappointing to hear the AFB was back! One good thing about a bacterial infection though, is that unlike a virus, there are ways to treat it; and again, it was very encouraging to hear the doctors say they were feeling so positive about getting rid of it!

Saturday:
One of the problems that I’ve spoken very little of so far, is that Benji’s kidneys and liver have not been working very well. The main reason I hadn’t said anything is because it is not unusual for transplant recipients to have post-transplant problems with the liver and kidney because of all the medications they need to be on. This is especially a problem in Cystics because they typically go into transplant already having some issues with their organs, due to the defective mucus that their body’s produce. (Since it is typically not life-threatening and quite manageable, it’s seldom talked about.) These organs have now become a larger issue and the fact that they’re not working properly, is most likely contributing to the fluid/blood drainage problem as well as causing fluid buildup in his body, which is causing him to bloat.

The longer it goes, the more the drainage has also become an issue. Evidently, this is something unusual and the docs are puzzled as to why this is happening. It seems they’re concluding though that the excess draining began as a result of the extensive (and unusual) amount of cutting that had to be done to remove Benji’s lungs. However, at this point it may be becoming a self-perpetuating problem. Benji’s protein levels in his blood are low, which the docs attribute mostly to all the blood he’s losing. The loss of proteins may then be causing him to drain more, because the protein helps absorb liquid in the body. So, he is currently getting a blood transfusion, in order to replace the proteins he’s lost. It would be great if this takes care of the problem; if it doesn’t, it seems surgery is the next option.

Pleurodesis is something else that’s been mentioned a couple times as a possibility to fix the problem. Interestingly, Benji had a pleurodesis in 2007, which is one of the reasons they had to do so much cutting to remove his lungs. The pleurodesis he had in ’07 was to help strengthen a weak portion of his lung by causing it to adhere to the chest cavity wall. This process produced scar tissue, which also strengthened the outer lining of the lung. (This is one of the reasons they had to do so much cutting, because instead of simply “lifting” the lung out, they had to cut it out.) You may recall that the surgeon had told us after surgery that Benji’s lungs were attached nearly the whole way around the lungs.
The purpose of a pleurodesis now would be to create scar tissue, which would help to stop the bleeding. If the plasma transfusion does not work, my guess is they’ll be trying the pleurodesis quite soon. Pleurodesis is a fairly easy, typically low-risk procedure, though since I’ve not talked about it extensively with the docs, I don’t know how much (if any) the risks are increased after transplant. How ironic is it that he may need to have a pleurodesis now, because he had a pleurodesis in 2007?

Tonight five of Allen’s siblings are coming down; his brother Sylvan and wife Connie are bringing two of his sisters, Wilma and Tina and his older brother Marion. They’ll be staying in the apartment while Allen and I both stay at the hospital. (I’m really glad they allow us to have overnight guests, but they want us to limit it to six people or less.) They’ll family will be coming to visit Benji tomorrow.

If nothing unusual happens for the rest of the day I probably won’t update again until tomorrow night, so we’ll see you then.

Until next time….

Thursday, January 17, 2013

I come to you this evening wondering what happened to the person who wrote last night’s update. “They” (the Transplant Team) were right; this is an unbelievable roller coaster! Just when we think we’re getting somewhere, we lose ground. I’ll be honest, I’m feeling quite discouraged right now.

Last night was a rough one for Benji. He struggled with back pain through the night again and about 5:00 this morning, his SATS (oxygen levels) dropped and he also began to complain of chest pain on his left side (His SATS had been running anywhere from 95 – 100 percent and they dropped to the high 80’s, low 90’s). As a result, he was put on some oxygen and had another chest ex-ray to check for pneumo. (Just the idea of him going back on oxygen was very discouraging!)

When the early morning ordeal began, Benji was complaining that he couldn’t take a deep breath and it hurt to breathe; and he seemed to be feeling some panic, which didn’t help. So, for a while, I simply sat with him, stroking his head and arms until he was able to fall into a fitful sleep again. It is SO difficult to see him in pain or suffering and feel so utterly helpless to do anything!

When the doctor came in this morning, he told me that Benji’s white blood cell count was quite elevated, signaling likely infection. In fact, the doctor said if he had to guess, he’d guess the problem with the lungs is infection rather than rejection; he also said he was really glad the bronch was scheduled for today so they could get in there and find out what’s going on. My immediate reaction to the idea that the problem may be infection rather than rejection was relief. Yet, in reality, depending on the details, infection could be worse than rejection. Again, the doctors didn’t seem that concerned either way; they seem to think that no matter what they find out, they’ll merely need to make some adjustments in meds. We pray that is so.

When they told us yesterday that he was going to have a bronch, they couldn’t give us a time, because he was going to be worked into a full surgery schedule, whenever possible; however, we were told it would most likely not happen till the end of the day. Because of this, we were especially happy to hear that it was going to happen at 11:30 this morning.

Allen and Aaron drove down last night but didn’t get here till late so we didn’t see them until today. I was so glad when Allen came; I was exhausted and was able to sleep while Allen took over. Everything went okay with the bronchoscopy, however, Benji’s lungs once again were full of the mysterious white mucus. In fact, there was a clump of it in his left bronchus, which is most likely what had caused the drop in SATS and been causing him to feel like he couldn’t breathe. Again, they suctioned out a bunch of the mucus and took biopsies; however, we won’t get any results until tomorrow. The docs also said they are going to put him back on a bunch of antibiotics, to make sure everything is covered until they can rule everything out. I would imagine this also means he’ll need to go back to more frequent lung treatments as well as nebulizer meds. This is such a disappointment after the way things seemed to have been going.

So, once again we find ourselves in the position of having things totally out of our control. From our vantage point, all we want to do is to step in, fix things (according to what seems right to us) and have Benji in perfect health at the snap of our fingers. And I again find myself full of questions. Why would God bring us to this point, take us through all these miraculous events, provide Benji with lungs that fit perfectly, and then, not allow his body to accept these lungs and get better? Why does Benji have to deal with all this pain and why can’t he just fix things and make them better? He could perform another miraculous healing and make Benji immediately well! And imagine how much more honor and glory that would bring to himself!

Yes these are certainly all questions and thoughts that go through our minds, however, no matter how discouraged we are, we continue to believe in a loving God who sees all and knows all and loves us more than we can ever imagine. HE is the one who is in control and in reality, only HE knows what is best for Benji in the long run; and us as well. We just ask for your continued prayers, especially for Benji’s healing, but also that in these discouraging moments, we would look to him for our strength. The happy moments are so easy; those are not the times we need to rely on God to carry us. It’s when things don’t go the way we want them too that our faith is tested. May we be found faithful, in good times and bad! For God is good, not just in the happy times, but also in the not-so-happy moments.

Thanks for all the ways you encourage us and for all your prayers of intercession. Following are two verses that were sent to me to today by friends; (thank you Marilyn and Julie, they were just what I needed!)

“Lord, help me not to fear for you are with me. I need not be dismayed for you are my God. You will strengthen me and help me. You will uphold me with your righteous right hand.” Isaiah 41:10

“The Lord bless you and keep you; the Lord cause his face to shine upon you, and be gracious to you; the Lord lift up his countenance upon you AND GIVE YOU PEACE.” Numbers 6:24-26

Dear Lord, give us peace as we ride this emotional roller coaster. Help us never forget you are in control; we do not need to fear and we can trust you. Benji’s future, as well as our own, is under your watchful eye. The love you have for us is incomparable with anything we have ever experienced and when things are difficult; there is no one who feels that pain with us, more deeply than you! Thank you for your faithful love to us!

Until next time….

Wednesday, January 16, 2013 8:49 PM CST

If you're on FB, and you think the following sounds familiar and you wonder if you've already read this, you most likely have read some of it. The FB post contained a portion of this update. :)

We have a few "happy dance" praises and a prayer request.

The praises are these:

1. The extremely rare bacteria (AFB) that originally did so much damage to Benji's lungs were NOT found in his old lungs! YAY!! This is a wonderful because it means he should be able to drop one more IV med. (He has been on this IV since October, 2011). They kept him on this med after transplant, just in case the AFB had transferred to his new lungs. (This was actually quite possible, if not expected. However, since the new lungs don't have that thick sticky mucus to trap the bacteria, if the bacteria had be found and treated immediately we should have been able to get rid of the bacteria.)

2. They have also dropped his two nebulizer meds. This means he is not having any nebulizer treatments. Benji has been doing these since he was a newborn and for more than half of his life, he's been doing them 3 to 4 times/day.

3. They have dropped the number of times he needs to get the lung treatment, from every 4 hours- round the clock, to 4 times/day- while awake! Hopefully he can get more sleep now! (The treatment is called an IPV and it shoots short, quick bursts of air into his lungs; the short, quick bursts cause a bit of a vibration, to assist in getting out whatever mucus may be left in there, plus it helps expand the lungs.)

4. His intestinal/bowel troubles seem to be improving and no severe stomach aches again today.

5. Each day he gets a little stronger.

Now for the prayer request:
Nearly every one of us has come to dread the "C" word (cancer) and the very idea of having it will strike fear into most of our hearts. It hasn't taken long to figure out that for a transplant recipient (and family), the "R" word does the same thing. Rejection!

Benji is still having a LOT of drainage through his chest tubes, from his lungs- far more than they expected him to have at this point. (The drainage consists of blood and other fluids). They're having a bit of a difficult time figuring out why this is but it is very possible that it is simply because it was such a difficult surgery. However, today we were told this could also be a sign of rejection. In order to rule out rejection, they've scheduled a 2nd bronchoscopy/biopsy for tomorrow, even though the next one would typically not be for another 3 weeks. The first one was one week ago, and we praise God that biopsy didn't show any signs of rejection; please join us in praying that tomorrow's biopsy will also be negative!!!

As I was listing the previous praises on FB, I was overwhelmed with gratitude at the incredible improvements we’ve already seen! Thank you Jesus! I was asking Benji tonight how different he thinks it will be going to Bible Camp this summer. This past summer especially, he so badly wanted to go to camp and I’m so glad God graciously allowed him to be home from the hospital, -just for that week. However, Benji’s horribly diseased lungs wouldn’t allow him to join in the fun and fully participate. If things continue with his new lungs, as they have been, (and we PRAY they do,) this year, camp should be entirely different! He will not have to do one treatment! He will not need to be on oxygen! No IV's! His legs and joints may still give him some issues, but his lungs should be just as healthy as everyone else’s.

And now, as I have been describing what this actually means, I can scarcely see through my tears as I am again overwhelmed at the possibilities that lay before Benji. (In fact, I cannot stop crying.) Oh thank you Jesus, thank you Jesus!! And again, thank you to the donor’s family who has made this a possibility for Benji! And to the surgeon, doctors and other medical staff who have the knowledge and skills to do this kind of thing!

I think I’m going to end with this tonight, hoping you will also experience the impact of the things I just described. Words cannot describe the gratitude we feel! And tonight, as you ask God for a clear report regarding rejection; please remember to express your gratitude to such a loving God who has so graciously allowed us to experience this!

Until next time…

Tuesday, January 15, 2013 8:52 PM CST

So today was not as smooth as yesterday. :( Around noon Benji was taken downstairs for an ultrasound and by the time we came back up to the room, his back was hurting him terribly! The nurse immediately got him his pain meds, I rubbed his back for a while; hot packs on the tummy and electrical stim mouse on the back. Within about a half hour, the pain began to diminish and he was able to fall asleep. The rest of the afternoon he struggled with a bit of pain off and on, but nothing as severe as the earlier attack. (Thank you Jesus!) I don't know if any of you have ever had any kind of intestinal or bowel blockage/issues, but they can be EXTREMELY painful, (I won't go into how I know that.☺). There is no question the frequency of the severe attacks has been diminishing, which we are very grateful for; we just continue to pray that the blockage can be removed.

Shortly after noon, my cousin Dave Troyer and his wife Martha stopped in on their way from Arkansas (where they had just moved their son) to Northern Indiana to visit his mother. They were here for a few hours and it was really nice to catch up with them, as I hadn't seen them in quite a long time.

I didn't have time to talk to them yet, but I saw there was a new Amish family in the RMH. I don't know them, but they look like they could be Missouri Amish; certainly not from Northern Indiana. I'm looking forward to seeing their expression when I speak Dutch to them. (I always love doing that!☺ "Nah, vaeh in de velt bisht du, ess du Datch shvetsa kansht?")

As I posted on FB, Benji and I enjoyed one of "Aunt Karen's" YUMMY cinnamon rolls tonight! ("Aunt Karen" is Karen Hochstetler from home, who has a wonderful little cafe in Middlebury and makes AMAZING cinnamon rolls!) And thanks you Shirls, for sending some down for us; they hit the spot! ♥

Benji’s getting his treatment right now, and I’m about to settle down to try to get a better night’s sleep than I got last night. We continue to be so grateful and awed by the way God has, and is, so generously providing for us and blessing us with Benji’s improving health! And again, thanks to all you prayer warriors out there, who are helping us, fight this battle! ♥♥♥

Until next time…..

P.S. One of the blessings we are already seeing as a result of transplant is that Benji no longer needs to have a "puke bucket" near by at all times. For YEARS we've always needed to have something handy because of his frequent vomiting and spitting up. The vomiting and spitting up were a result of the thick, sticky mucus in his lungs. While in the hospital, we always had a puke bucket sitting on the foot of his bed or on his bedside table; we ALWAYS made sure he had one at his fingertips. And we're not talking one of those dainty, little, kidney bean-shaped emesis basins- we're talking the big wash tub style. ☺ Since transplant, I don't know that he's done ANY vomiting, other than maybe a couple times when he was still taking the medication that made him nauseous. He does spit up mucus at times (nice looking mucus though, haha), but its such a small amount that he can spit it into that kidney bean-shaped basin or even a Kleenex. And I just gave you proof that EVERYTHING is relative! Yes!!!! We have now moved up to dainty emesis basins! lol

Monday, January 14, 2013

As I've told some others, the old saying, "No news is good news", is certainly true; at least in this case. We praise God that Benji had a relatively good Sunday and Monday. He did still have a fair amount of stomach and back pain yesterday, enough to make him miserable. However, today he complained very little of pain; either in his stomach or back. The few times he mentioned it, we seemed to be able to manage it with meds or the electric stim mouse. Praise God!!

He did have both a chest ex-ray and stomach ex-ray yesterday morning. The results of the stomach ex-ray was that there has been some movement in the intestines, but it is still full. This is not a surprise since he's still having approximately 7 to 10 very watery stools throughout each 24 hr. period.

The chest ex-ray showed that he still has a small pneumo, which means he has to stay attached to the suction and the atria. This makes it much more difficult for him to move around. :( That was really an unfortunate accident and it possibly set him back, at least a few days. One of the criteria for release is that he doesn't need the chest tubes any more. He is however, still having quite a bit of drainage from his lungs, so even if the pneumo were completely healed, he wouldn't be released at this point. (The drainage is blood and other fluids; it was explained to us that if you think of it in terms of a surface wound- they not only bleed but as they heal, they often "seep". This is a HUGE wound on the inside that is still doing some bleeding and seeping.)

According to the Transplant Nurse Practitioner, it seems there is a possibility Benji may be released by the end of next week. We had been told before transplant that we can expect to be in the hospital at least 3 weeks afterward; the end of next week would be just over 3 weeks. Wow! It's amazing where we have come in 2 weeks and at what a different place we are then we expected to be 2 weeks ago!!! God has been so gracious!

Allen did go home today, for a couple days; he needed to get home to catch up on a couple things for work but he's planning to come back down on Thursday again. It was quite difficult for him to leave, but certainly nothing like it would have been a week ago!

Thanks again for your prayers, notes of encouragement and other forms of support. We continue to desire your prayers; for removal of the pain, for those intestines to clear up completely, for the pneumo to heal and of course, that he would be able to go "home" (to the apartment) as soon as possible.

Until next time....

Saturday, January 12, 2013

First the AWESOME news: Benji is no longer on ANY oxygen! Over a period of several hours yesterday (Friday), the nurse weaned him down from 3 liters to none! This is an awesome improvement! And today he SATS (oxygen levels) were 99 percent room air! These are the highest SATS he’s had for a loooonnnggg time, even when he was on oxygen!

Now the not-so-good news: Thursday night, Benji had a very rough night which extended into Friday morning. Fortunately, by late afternoon on Friday he was doing much better. Unfortunately, he got very little sleep that night. We were told before transplant that he was guaranteed to get diabetes afterward so, barring a miracle, he'll need to be on insulin the rest of his life. The steroids he has to take have already begun to cause his blood sugars to skyrocket and as a result he now needs insulin. On Thursday evening they kind of goofed in their calculations on how much insulin to give him and they gave him too much; as a result his blood sugars were low all night long. This meant they needed to check his sugars every hour and since the numbers stayed low they had to wake him up to give him stuff to bring them back up. He also gets a breathing treatment every four hours which doesn't help the sleeping!

Benji has frequently complained of back pain over the past week, and more recently severe stomach pain. Early Friday afternoon he again complained of tummy pain. A comment that Benji made caused me to think about the possibility that he may have a bowel impaction; this would explain the tummy pain, back pain and the watery stools. I questioned the doctors if that might be a possibility and they agreed that an impaction could be the problem so they ordered a stomach ex-ray. We got the results from the ex-ray last evening and it verified that his bowels are full, despite the fact that he is constantly going to the bathroom. This morning (Saturday) they did a lower GI/Barium enema contrast study. The barium is a substance they insert through an enema which creates a contrast; this makes reading the ex-ray much easier. The results of the ex-ray confirmed that he had a blocked intestine. The current treatment is to use enemas (poor guy!) and Miralax fiber, to help clean him out; however, if this doesn’t work, they may need to use an invasive procedure. (i.e. colostomy, stent, or even more extensive surgery.) We’re just praying that it gets taken care of ASAP, so he doesn’t have to endure any more pain; I think he will make some drastic improvements once that’s taken care of! (I always find it interesting when these amazing doctors, who can do incredible things to make us well, miss thinking of some fairly easy solutions to problems.)☺ No matter, we are just delighted that we probably have answers to the stomach and back pain, as well as the diarrhea he's been having!

Right shortly after I had spoken to the docs we had a bit of drama. I had gone downstairs to get something to eat and when I came back up, about 15 minutes later, Benji was having SEVERE chest pain and said it was hard to breathe. I was told they had discovered that the end of one of his chest tubes had come off and because it wasn't caught right away, some air had been sucked into his chest cavity, causing a small pneumo. (He had been up to the bathroom and we think it came off in the process of crawling back into bed. When the nurse next came into the room she heard a hissing sound and discovered it.) There was a flurry of activity in the room, with a doctor and about 4 nurses working as quickly as possible to get him hooked back up to a suction atrium, which sucks the air back out of his chest cavity.

In my attempt to simplify things in the past, I have referred to Benji’s pneumos as a “hole in his lung”; this may be causing some confusion for you right now. If you look at the actual definition of a pneumo above (just below the picture), you’ll see that a pneumo is actually an air pocket in the chest cavity, outside the lungs. Be assured, Benji’s new lungs DO NOT have a hole in them! ☺ This time, the air pocket entered the chest cavity, not through the lungs, but through the chest tube. Shortly after they got him hooked up to the suction, the pain began to subside and he hasn’t complained of chest pain ever since. They did another ex-ray this morning (Saturday) and it still showed some air around both lobes. He is still attached to the suction atria (this is the proper plural form of the word atrium, which I didn't know previously and thought you may not either. haha). Hopefully he won’t need those long because they make it really difficult to walk and he really needs the exercise. It’s amazing though how much easier it is for him to get in and out of bed today, as opposed to just a few days ago. He seems to really be making progress!

Tyler drove down Thursday night, and got here early Friday morning. He and Allen came into the room, just as we were finishing up getting the chest tubes hooked up again. Of course Benji was glad to see him and I know it felt really good for Tyler to see Benji as he is now, compared to when he saw him last! (which Benji doesn't even remember). Tyler and Allen both stayed in the room with Benji overnight and I took my turn at the apartment. Benji had a few more bouts of tummy pain throughout the evening, and another one around midnight last night but he had no back pain all night. After that bout of tummy pain was over, he slept from 2:00 a.m. to 10:00 a.m., except for treatments and bathroom breaks. After he woke up this morning he said he "finally got a break overnight" PTL!!!

Today was a little rough again as he had stomach pain off and on. However, by this evening he felt fairly good again and actually ordered some food off the menu, (and ate most of it ☺). This is the first solid food he’s had since the surgery.

Shortly after 9:00 p.m., Cory got here with Aunt Connie and Uncle Sylvan. They’ll hang around for a while tomorrow before heading home. Aaron was going to come too, but isn’t feeling too well; we figured that with how much this vicious flu is going around, it’d probably be best that he not be around Benji right now. :( (I told him next time he'll have to come anyway so mom can see him.☺)

At this point, if Benji continues to do as well as he is, Allen will probably go home Monday for a couple days. Hopefully Benji condition will be such that he can do that. It also occurred to me today, that I had thought I’d be “trapped” here in St. Louis for a long time, since, while we were waiting for transplant I wouldn’t have wanted to leave in case I would miss “the call”! Now however, once Benji is on stable ground, Allen can stay here with him and it won’t be a big deal for me to go home for a little.

One thing that this experience has shown us more clearly than ever before, is how amazing it is to be part of such a loving, caring community! But even beyond that, the unbelievable generosity of complete strangers! Again yesterday I experienced an incredibly generous act from someone completely outside of our community and whom we didn't know at all! All the things you do to show us how much you care and support us (in every possible way) is sooooo humbling! I'm speaking to those of you who are reading this right now as well as others who have never read this page! I seriously don't know if there's ever been anyone more covered in prayer than Benji! Thank you all again for all of your support in so many ways!

Benji actually got on FB last evening and since many of you are not Benji's FB friend, I'll share what he posted: "thnx everybody for all the prayers and blessings thst I got over the last week, they really mean a lot." ~Benji

We continue to ask for your prayers! We firmly believe the successes we've seen over the last months have been because of your prayers!

Until next time...

Food for thought (WHICH YOU MAY NOT WANT TO READ IF YOU HAVE A WEAK STOMACH(lol); but it really does show a major improvement for him:
How many of you have ever made the comment, "Now that is some beautiful mucus!!!" haha That's the life of a cystic. For years we have cheered Benji when he's able to cough out large amounts of mucus, as if it were a baby taking their first steps; and for a lot of years, but especially recently, Benji has been coughing up the ugliest looking stuff! Very dark- brown with a greenish tint. There is still some mucus in his lungs that he's needing to clear (not unusual immediately after transplant) and last evening when he was able to cough some up, it was totally clear and looked GREAT to me! This prompted me to say, "Now that's some beautiful mucus!" Perspective is everything! :D

NOTE: You may be wondering why this journal update is for Friday but the update just before this also says Friday. To clear up any confusion, that update was actually for Thursday; if you notice, it was posted 9 minutes after midnight on Thursday. :)

Friday, January 11, 2013 0:09 AM CST

Today turned out to be another great day! We are thanking God for more answered prayers!!!

Benji’s night was again not great nor was his morning and some of his afternoon. Of course, days are not so much “his thing” anyway; he’s more of a night owl (like his mother!☺). He still struggles with not sleeping well at night(which any of you who have ever tried to sleep in a hospital can understand), and then he has that yucky nausea. The thing that seems to be bothering him the most though, are his back aches. Allen and I have been concerned about what is causing this and have been a bit frustrated with the doctors because they never seem very concerned. They did try to manage it with pain meds, but haven’t been very successful because the meds that would really help also make him sleepy and he can’t afford that. He needs all the energy he can get in order to get those new lungs exercised. I did finally ask a nurse this afternoon if back pain like this is common among lung transplant recipients and she said that it definitely was. It made me feel much better to know that this is not a problem peculiar to Benji- (which probably means there’s not some other unknown “something” going on that we need to be concerned about); instead, it is most likely a side effect of being cut open from one side to the other. Now, if we can get the back pain, the nausea and sleepless night under control….. he’d be a COMPLETELY different kid! ☺

When I got to the hospital today, Benji’s back was really bothering him; he just couldn’t find a comfortable position and was obviously very uncomfortable. I was surprised that the hospital has something like this, but they had brought him a massage mouse (one of those electric stim machines), and he was using that when I got here. After I rubbed his back for a while, (while he was using the stim), the pain seemed to subside.

The first good thing that happened today was getting the results to the bronchoscopy/biopsy. One of the best things to hear after a transplant is, "there is no sign of rejection" and that is EXACTLY what we heard!! What an awesome feeling to hear those words!!!! This doesn’t mean that there will never be any rejection; in fact, he will have regular bronch/biopsies to check for rejection for the rest of his life. The first three months he will have one monthly then after that they start to spread out. I think the longest time he will go without having one is one year. This is only if he doesn’t have unusual symptoms pop up such as fever, extra cough, runny nose, etc.; really anything could be a sign of rejection and it’s very important to catch it as soon as possible. This is why, if we EVER notice anything unusual, we’re supposed to immediately let the transplant team know and if it’s something they’re concerned about they will transport him down here to check things out. Therefore, it will be a continuing joy to hear those words, “No rejection”!
The other results we got from the bronch were that the cultures were not showing any bacterial growth; however, we won’t be certain there’s no growth for a few weeks because it takes some types of bacteria a while to grow. We continue to pray that those come back clear! The only thing that showed up in the test was the cold virus that they’d found previously.

We also got to move off of ICU late this afternoon and onto 7 West! Yay!!! I forgot to say that one of the things I noticed when I got here today was that Benji was hooked up to even less tubes and wires than before, and actually looked much like he typically does when he’s hospitalized. It’s so good to see him look more normal and we’re delighted he’s doing well enough to move off of ICU. There are a few other reasons this is a great thing. The ICU room is so small, there’s hardly enough room for a chairbed against the wall, so it’s not ideal for “hanging out”. ☺ The new room is practically double the size. We also had to “garb up” (gloves, masks and paper gowns that were hotter ‘n blazes!) whenever entering the room, and the whole time we were in there (including when we slept.) Now, the staff still needs to do those things, but we don’t’! In ICU, f we wanted to go to the bathroom, we had to walk a little ways to use the one in the family lounge; now we have our own bathroom. Because the room on 7W is so large, we can sleep on our air mattress instead of the horrid chairbeds! (Have you picked up that I’m not a fan of hospital chairbeds? Lol) And lastly, we were not allowed to eat in the room, so whenever we wanted to eat, we’d have to go find somewhere else to do that; now we can eat and be with Benji at the same time.

When we moved to 7W, they had Benji get up and walk a little bit of the way. I’d say he walked about 20 steps down the hall while the staff cheered him on. This was NOT something HE was cheering about. I felt really bad for him because at that time his back was still really hurting him, and it hurt to walk. However, we and the hospital staff have to use some tough love right now; we need to push him beyond his comfort level, and yet try to be sensitive to what he can handle and not push him too far. They had told him he only needed to go as far as he could make it, so when he said he was done, they sat him down in a wheel chair and pushed him the rest of the way. He was exhausted by the time he got to the new room, but then sat in a chair for about an hour. His backache, for whatever reason, eventually subsided and after that he was a different kid for a few hours, till the nausea and backache returned. We talked and laughed some; he ate a popsicle and watched TV. This is when I took the picture I was so excited about, that I posted on FB. I want to update his photo page on CB but just haven’t gotten to it yet. I know some of you are not on FB and would love to see some of these pictures as well, so I will try to get on that as soon as I’ve got a little extra time.

Oh thank you Jesus for your amazing love and care and thank you for the slow (and sometimes fast), steady progress in Benji’s health! We just can’t find enough words to express our gratitude! And thanks to all of you who continue to support us in so many ways!! I wish we could personally speak to and thank each one of you personally, but since we can’t, please know how much we appreciate you all!!

A few more prayer requests:
1)Benji has some open sores on his back and coccyx that need to heal

2)That he continues to be able to fight off that cold virus

3)That he not get any new infections

4)That the pain in his back would subside and his nausea go away

5)Again, that his diaphragm begins to work

6)And again, that he is able to build up the strength he needs to heal completely

7)One last one, Tyler is currently on his way here; if you’re still awake, please pray for his safety as he is driving through the night.

Aaron and Cory are also coming down on Saturday and we’re looking forward to seeing them all! I think they are also very excited to see Benji now; things have changed soooo much since they saw him a week ago!

Until next time….

Wednesday, January 9, 2013

Last night Benji got more sleep and had a better night than the night before; and he had a fairly good day today. This morning, he had a bronchoscopy- a procedure where, after putting him to sleep, they put a tube in his throat and insert a scope into the lungs. This was in order to get a biopsy of the lungs (which is standard procedure one week post-transplant), and while they were in there, get a look around to make sure everything is looking good.
These are the details of the report we received afterward:
1) We will not have any biopsy results till at least tomorrow.
2) The location where Benji’s bronchi and the new bronchi were stitched together looked excellent.
3) There was some redness and inflammation in the trachea of the new lungs; they can’t say what the reason is for that but hope the biopsy can give us some answers.
4) His right diaphragm did not appear to be working, which might explain why the right lung is not inflating as well as the left. This is not of great concern and the expectation is that the muscles of the diaphragm were cut in surgery and simply haven’t healed yet.
5) They did find some mucous in his lungs- both sides.
6) There was not a pneumo.
Benji did fine during the bronch but when he came back to the room, he complained of his back hurting again, on the right side, where it had hurt before when they discovered his right lung was deflating. A heating pad seemed to help that some and he was feeling better when I left to come back to the apartment.

Its Allen’s turn to sleep in the room tonight; trading off has been a really nice thing for us (at least for me!)☺ Usually, when Benji is hospitalized, I sleep in the room with him on an air mattress, and when Allen and the boys come, we all sleep in the room. However, we are not typically in ICU and the rules there are different. First of all, only one can sleep in the room at a time and secondly, air mattresses are not allowed; and even if they were, there wouldn’t be enough space to use them in that tiny little room! Therefore, we have to sleep on those HORRIBLE chair beds they make for hospitals. By trading off nights, we only have to sleep on them every-other-night, and the nights we do, we can always look forward to sleeping in our own bed the next night. When Allen goes back to Indiana, I’ll need to be there all the time by myself; however, I don’t think Allen will make it home this week and will probably not go home till after the weekend. By then, we hope to be out of ICU and on 7W! In fact, the current plan is to move him there tomorrow!!! Yippee skippee!!!!! Of course we’re delighted that the reason we can move is because of the progress Benji has been making! But we are also excited because those rooms are much larger, I can use my air mattress, we’ll have a bathroom in the room that we can use and we can eat in the room! ☺ The doctors and other staff continue to tell us daily how well Benji is doing. Thank you Jesus!

Here are a few things that take up Benji’s day: Every hour or so during the day, Benji does a breathing exercise with an incentive spirometer (a device used to help expand the lungs); his numbers on there are improving slowly, but surely. They are making sure Benji gets out of bed to walk a bit, and then sits in a chair for about an hour; the goal is to do this three times/day, but they weren’t able to accomplish that today because of the bronch.

Benji has a few complications/annoyances that we're trying to manage; diarrhea and nausea. We're not sure why he's having such severe diarrhea, but the nausea is the result of one of his meds. The problem is, he needs the antibiotic that makes him nauseous, yet the nausea takes his appetite, which causes him to not eat solid foods, which makes the diarrhea worse! LOL Additionally, it vital that he builds up his strength and that’s more difficult to do in this condition.

One more thing; I spoke to Allen after getting back to the apartment, and he said Benji had completely woken up from his sedation and was talking like crazy! It’s typical that when Benji is in the hospital, he’ll be quiet (and sometimes moody) most of the day, but come evening, he’s like a different kid. That’s when he seems to “wake up” and when we usually do our talking and have fun times together. From what I gathered from Allen, that is how he was this evening; mostly pain-free, fairly light-hearted and in a talkative mood. They were talking about his feelings about some of the things that have happened over the past week, what all he remember, lots of sports stuff, etc. Once again, I cannot tell you how much joy this brings to my heart! It is such a huge contrast from two days ago, and even from yesterday. Another good sign that he’s on the road to recovery!

We are thanking Jesus for every small improvement and ask for continued prayers! He still has a long, hard road ahead of him! Some specific requests:
1) That the biopsy is positive and that the redness in his throat turns out to be a minor issue.
2) That his body is able to fight off the cold virus in his lungs. (Which, interestingly enough, they believe came along with the new lungs. Many of us carry this virus; we just have strong enough immune systems to fight it off.)
3) That he continues to gain strength, both physically and mentally.
4) That he not get discouraged and maintains a positive attitude.
5) That his diaphragm begins to work normally
6) That Allen, I and the rest of the family continue to have the strength we need to walk this road with him.
7) And even though these things are relatively minor in the larger scheme of things, it would be great if the diarrhea and nausea would also go away

Thanks for checking in!

Tuesday, January 8, 2013 9:11 PM CST

As we’ve stated before, and as we are coming to realize more and more, this is certainly not a smooth, easy ride! Yesterday was soooo encouraging and the improvement so drastic we could hardly contain ourselves. We have also made some progress today, but had a bit of a set-back again overnight. It’s kind of been feeling like we’ve been taking 2 steps forward then 1 step back; however, yesterday felt like we took 10 steps forward, and maybe 2 or 3 back last night.

I left to go back to the apartment around 9:30 last evening, while Allen stayed here for the night. When I left, Benji was complaining of some pain in his back, which is not unusual for him. He often gets a stiff neck when he’s lying in a hospital bed for a period of time and at times he will complain of some pain in his back, so this didn’t surprise me too much. Allen was concerned it might be the lungs again, since the pain was on his right side, (the same side as the lung that had started to deflate last time.) The doc came in and checked him out, but didn’t think it was the lung. Well, once again, Allen had a stressful night. (He was also here the night the right lung began to deflate and that was quite a traumatic experience for him!) In fact, the pain in the back turned out to be the right lung deflating again, but fortunately, it wasn’t nearly as bad as last time. When his lung collapsed last time, they had to increase his o2 to 10 liters; this time he only needed 4 liters. The docs don’t seem too concerned; they said as long as he’s getting up, moving, and doing some breathing exercises to help inflate his lungs, he should be ok.

So that was the bad stuff; he did take a few more steps forward today. It’s so interesting how this feels a bit like a baby’s “firsts”. I want to get pictures of each new step of his progression and we cheer it as if it were a baby taking their first steps! ☺ Today, Benji didn’t just sit up in bed; he sat on the edge of the bed, then in a chair. Later he took about 10 steps (with a lot of help because he’s very sore and his muscles are weak), and then he sat in a chair for about an hour. Because of the problems overnight, Benji was quiet exhausted today; yet despite that and though it sometimes hurts and is uncomfortable, he did what they ask of him like a trooper.

The thing that Benji hates the most and causes him the most pain is having his chest tubes stripped. He has four chest tubes and they need to be stripped on a regular basis so that blood clots don’t clog the lines and block the blood and fluids from draining. Stripping creates some suction in his lungs and causes him a fair amount of pain. They’re trying to balance managing his pain and yet keeping him alert enough to do what it takes to get those lungs in shape. And by the way, the staff here has been wonderful! Very caring and compassionate!

Another huge improvement from yesterday was his ability to tolerate his lung treatment. They’re doing a treatment that pumps bursts of air into his lungs at a rapid pace which creates a vibration; this is to help loosen whatever mucous is in there as well as assist in inflating the lungs. They had been doing this while he was still on the vent, but when they first took him off the vent, he had a difficult time tolerating it. The RT today told me that when they first did the treatment after extubation, he could only tolerate it in 30 second intervals; today, she did it for 15 minutes at a time!!! That’s a MASSIVE improvement!

It’s been so hard for us to know how to judge Benji’s progress, since we don’t have anything to compare it with; so today I asked the surgeon if it would be possible to rate Benji progress on a scale of 1 to 10. I was originally disappointed with his answer, (which was 5); because I thought he was saying Benji was only ½ way to where he should be at this point. However, it turns out he was rating how he thinks Benji is doing NOW relative to where he wants Benji to be at time of release. (In other words, he’s about ½ ways there.) He also said that Benji is where they would typically expect one to be at this stage. These two things were very helpful and reassuring! There was actually some talk late this afternoon that he may POSSIBLY be able to transfer out of ICU tomorrow. If he does, it could either be to the regular floor where the transplant patients go, or to the intermediate/transitional area.

Currently, at 9:00 p.m., Benji is sitting up in bed, (I’m surprised he’s not sleeping) watching Chopped on the Food Channel (one of his favorite shows). The two channels that Benji watches most frequently in the hospital are ESPN and the Food Channel and he has really taken an interest in cooking. I LOVE that! One of these days I’ll have him take over the cooking at our house. ☺

Asking for your continued prayers and specifically that Benji’s lungs (especially the right lung) would expand like they need to and that he would continue to gain strength.

Praying for a quiet night and more improvements tomorrow!

Monday, January 7, 2013 CST

Wow! What a day! It’s amazing what a difference 24 hours can make! Today it feels as if Benji has taken a HUGE leap forward in his recovery. This was the first day I felt like, “Yes! He IS going to pull through this!” Both Allen and I feel as if a huge burden has been lifted and we are walking on air. The feeling is really indescribable! They took him off the breathing tube this morning and since then, he is like a different kid- much more like his old self; Allen was even able to get a little smile out of him! We were able to carry on conversations with him. He even asked for his glasses and wanted to get on Facebook. (Though he wasn’t able to be on it very long.) We got him up and he sat on the side of the bed; tomorrow we plan to get him up in a chair! He also said he wanted to watch the Notre Dame game tonight, but it ended up he was too tired. (Previously, when we would ask him if he wanted to watch something on TV and he showed absolutely no interest, even in his favorite shows.) It was probably a good thing he did fall asleep- watching the game would probably have caused a set-back! Geesh that was ugly!

Up until Benji was taken off sedatives, he was quite lethargic and even though he would answer us, it seemed like he wasn’t really with us. I don’t know how to describe it, but his eyes almost had a vacant look to them. Since they took him off the morphine and sedatives on Friday, each day we have seen an improvement. However, even yesterday he still seemed to have some of that vacant look in his eyes. I think those that visited Sunday, could attest to that.

For a while, after the vent was removed, Benji responded with hand signals; he wasn’t used to being able to talk and responded that way instinctively. When Benji did talk there was such an obvious difference from the last time the tube was removed, in how well he spoke. He was much weaker the first time and when he would talk he would have to say one word at a time so he could take a breath in between. This time, while his voice was a bit coarse from bruised vocal cords, he was able to speak fairly normally. Immediately after the vent was removed, I thought he seemed to be struggling to breathe a little and I asked him if he was having a hard time breathing; his response was that no, he wasn’t struggling, it just felt different. I can only imagine! Also, with this extubation, he only had to wait one hour for ice chips and a little longer for that glass of water. As he was eating his first bite of ice, we heard him say, “Mmmmm”, as he took pleasure in moistening his parched mouth and lips. Water NEVER tasted so good! ☺ He is currently doing very well on 3 liters of oxygen but they’re hoping to start weaning him down tomorrow.

One piece of news we got this morning, that wasn’t exactly positive, is that his liver is not functioning properly and is not metabolizing his meds like it should. The concern with this is that it is causing him to be too immunosuppressed, which is good for the lungs, but not for fighting off other illnesses. The docs didn’t seem too concerned because they feel it is something manageable. Additionally, he’ll most likely need to go on insulin shortly since his blood sugars are shooting up. For a little more than a year, Benji has been diagnosed borderline diabetic and has had to be on insulin when on steroids. From now on, for the rest of his life, he will be on steroids, since that is what he needs to take to keep his body from rejecting the lungs. We had also been told prior to transplant that he was guaranteed to get diabetes after transplant, so we’re not surprised at this.

Allen is staying with him tonight while I came back to the apartment. He had been thinking of going home tomorrow for a couple days to catch up on some work, but with Benji the way he was, he’s waiting till at least Wednesday. The other boys are really excited to see him again; the way they saw him last was not a pleasant memory. I’m really excited to be able to see them all interacting normally again!

Until next time…

A couple of other interesting tidbits: I asked Benji yesterday if he sometimes feels like this wasn’t worth it and he nodded. I of course told him that I was sure it won’t be long before he doesn’t feel that way. The other thing is that after he got on FB, I told him that sometime he’ll have to read my updates so he knows what all happen over the past week. His response was, “I’ll never be able to.” When I asked why, he said, “Because there’s too many.” ☺

Oh, and HAPPY BIRTHDAY DEAR SIS! Wish I could be there to celebrate it with you! Hugs!!

Sunday, January 6, 2013 5:42 PM CST

Well, I certainly feel more rested than I did a couple days ago! We have a friend Priscilla; she is a nurse who has frequently taken care of Benji in the past and also has a daughter with CF. (She also had another daughter with CF who has passed away.) Priscilla called on Friday and said she and Dawn (her daughter), both had such a burning feeling that they should offer to come down and help this weekend, if we wanted them to and if they wouldn't be in the way. The thought had never occurred to me to have someone else stay with Benji overnight, except for Allen and me; most people wouldn't be very comfortable with it and we would never have asked anyone else to do it. When Priscilla said something, it struck me that she is one person we could feel comfortable leaving Benji with, (as long as he is stable enough); not only is she very familiar and comfortable in this setting, Benji would feel comfortable with her as well! So, bless her heart, she drove down from Indy and stayed with Benji overnight so Allen and I could go to the apartment and get a good night’s sleep. (Dawn ended up not coming along this time.) It worked out particularly well because 4 of Allen's siblings, Mel, Rose, Naomi and Sylvan, came down late last night and we were able to go out for breakfast with them before coming up. While we were at breakfast, I got a text saying the unit had been temporarily shut down because they were doing some type of procedure on the floor; and no one was allowed to enter the unit or leave the room they were in. It ended up being about 11:30 a.m. before we were let onto the unit.

Things were mostly peaceful overnight, except for the bad diarrhea he's had since they started his feed. :( They stopped that around 2:30 and Priscilla said the rest of the night was quiet. Benji gets some pain meds just before they give him his chest therapy; otherwise, he is taking no pain meds, which amazes the doctors. Also, they almost always keep the kids sedated while on a vent, because they get agitated and pull at the tubes. Benji has no sedation, but he's very relaxed and there's no problem keeping his hands off the tubes. The chest ex-ray this morning looked good & inflammation is down. They're starting to wean him off the vent today. Currently, he's only on about 1/2 vent and doing well, but they don’t expect to take him off of it until tomorrow morning, at the earliest. Yesterday, for the first time they slightly inclined his bed; today he’s been sitting straight up in bed!

Communication has been a bit of a problem, so on the night before last, the nurse set up some hand signals to help Benji communicate what he wants; we've also been using pen and paper for him to write things as well. These things have helped to cut back on his frustration level.

The medical team has been telling us that Benji will remember very little about being on the vent, because of the meds he’s on. As alert as he appeared to be, it was difficult to imagine he wouldn’t remember things. However, we were surprised when we asked him today and he said that he had no memory of what happened Friday or that the vent had been removed and then put back in place. It’s really weird because at the time, he would ask how much longer till the vent was coming out- aware that we had been talking about talking about doing that. He also knew to ask how much longer till he could get a drink, etc., yet now, he doesn’t remember these things. We think it’s a good thing that he doesn’t remember, however, neither does he remember that his brothers and my parents had been here. :(

It's beginning to feel like we may have turned the corner with Benji; we pray this is so! Thanks again for all the support and prayers!

Until next time…

Saturday, January 5, 2013 10:00 AM CST

This is Saturday morning, but I'm posting for yesterday. Friday was quite a stressful day! It started around 5 a.m. when Allen came to the hospital to relieve me. Up to that point I'd had probably 8 hours of sleep since Monday night. (Aside from the few times I dozed for short periods- 1/2 awake)

Just before I left they came in to do a chest ex-ray and discovered Benji's right lung had begun to collapse/deflate and they were going to stop doing the IVIG, which they had been doing overnight, because he had been having some allergic responses to it; they would try that again on Saturday. (For a definition of IVIG, see the previous journal update.) They said the reason was that Benji had not been taking deep enough breaths so they began doing regular therapy to try to expand them. Things seemed to be pretty well under control and they didn’t seem too concerned, so I left to go back to the apartment and get some sleep; with the understanding they should call if things got worse. I didn’t get to sleep till about 8:00, after the boys and Mom and Dad left and around 11:00 I got a call from Allen. He called to tell me that they had been working with Benji all morning and hadn’t been getting anywhere so now they had decided to do a bronch, and there was a possibility he may need to go back on the vent. (A bronch is short for bronchoscopy: a procedure that allows your doctor to look at your airway through a thin viewing instrument called a bronchoscope. With this, they are also able to take biopsies and suction out the lungs.) I could tell by his voice he was concerned and though he told me I should stay home and sleep some more, I knew I wouldn’t be able to go back to sleep, so I got cleaned up and went back over to the hospital. (I figured if I were right there, close by, I could sleep better than being at the apartment.)

When I got there, they had already reinserted the vent (breathing tube) and were just finishing up with the bronch. Benji had to be sedated again so he was asleep when I got there. This is all so new for us, and not only do we not know what to expect, the doctors often seem not to know as well. They say each lung transplant recipient’s response is different, which makes it is very difficult to predict anything. However, after speaking with the doctors, I felt much better; they seemed confident that this was not something all that unusual and reassured us that the speed of Benji’s initial recovery and ability to be off the vent so quickly, had been remarkable. It could be the case, that if Benji’s initial projectory hadn’t been so good, this wouldn’t have been as traumatic as it was. They also told us they felt he was good enough that they’d be able to remove the vent again after he woke up, in a few hours. Benji never did have the vent removed on Friday because he never woke up enough to do so. Another change they have made is to take him off the morphine and put him on a drug call Fentanyl. They feel the morphine may be sedating him too much.

The doctor also told us they had suctioned out a huge amount of mucous in Benji’s right lung, in fact, there was mucous all the way through it. (It’s no wonder Benji’ hadn’t been able to breathe deeply or cough stuff out.) Of course, it’s really difficult to know what the cause of all the mucous is, but they are attributing it to the cold virus. [An interesting factoid the doctor told us is that while we know Benji has this virus, many transplant patients in the past may have also had it, they just didn’t know it because they’ve only been able to test for this virus for 6 months.] We’re hoping and praying he will be able to fight off this virus and that his body will accept the IVIG, which could possibly, help him do that.

I was able to sleep some, in the room in the afternoon, and in the evening, after feeling confident that Benji was stable and they didn’t anticipate anything major over night, I left the hospital around 9:00 to go home to try again to get a full night’s sleep. This is now Saturday morning and I have texted Allen a few times through the night and this morning, and he assures me everything is fine. I am going to try to get the apartment in order yet before going back over today. We hadn’t even totally finished unpacking everything, so I’d like to get that stuff put away.

As I’ve commented about before, Benji is able to respond and after taking the vent out was able to speak. However, he has only spoken when he needs something. When he has spoken, it has been very labored, only being able to say one word at a time. His speech is still quiet and raspy, because his vocal chords are bruised and sore from the vent. I’m not sure what the labored speaking was about, it seemed he only had enough strength and breath to get out one word at a time. We’re assuming that will improve once they can take that vent out again.

Benji, understandably has seemed unusually frustrated and agitated. I’m guessing the meds could have something to do with it, but both Allen and I wonder if he may not be very happy with us right now because we encouraged him to do this. At this point, he may feel this wasn’t worth going through what he’s been going through. We pray that he will continue to improve and if that happens, I’m sure the time will come when he will feel differently. It just seems that he HAS to come out of this and this HAS to have been the right thing to do, otherwise, why would God have so miraculously brought us to this point? However, we always know God has a plan, far greater than our comprehension, and we are not presuming to know what his ultimate goal for all of this is. Please continue to call on him for healing and wholeness. I recently, on Facebook, re-posted a beautiful quote on prayer which I though said it so perfectly. 'Prayer is not overcoming God's reluctance; it is laying hold of His highest willingness. Prayer is not an attempt to change God's mind, but to get ourselves to the place where He can trust us with the answer." - Phillips Brooks. We pray he can trust us with his answer!

We love you all! What a blessing Caringbridge, but especially FB has been through this time! We are able to rally a legend of prayer support that we wouldn’t be able to otherwise. May God bless you all for your thoughtfulness, concerns, expressions of love, and prayers! We continue to believe God has great things in store for Benji’s life and will see us through!

Until next time…

Update: I spoke to Allen and he said the vent will probably need to stay in another 24 to 48 hours. He said Benji has been off morphine or any pain meds; he is not having any pain!!! Also, while Benji is disappointed about the vent being in, he is much more relaxed and a different kid since being off morphine. Praise the Lord!

Wednesday, January 2, 2013 1:28 AM CST

In case you haven't heard, Benji is in the process of getting his lungs- right now, at this moment! Once again, God has amazed and miraculously blessed us with an extremely short wait! (Average waiting time here in St. Louis is a little more than 9 months- we waited 5 days!!) We still feel like we're in a dream. Couldn't believe it when we got the call saying there was a potential donor. It's hard to believe it's actually happening! This is what we call "shock and awe" ☺ God also blessed us by allowing Allen and Tyler to still be here; they were planning to drive back home tomorrow morning, (actually, this morning). We are in such awe of the way God has been working and feel blessed far beyond what we deserve!

Allen and I were in a Salvation Army store when we got the call at 5:00 p.m. last evening. We were told there was a "potential donor" and that we should go to the hospital and check in. (It is never 100 percent certain that the transplant will actually happen till it's nearly time for the patient to be taken into surgery, so for a few hours, we needed to cushion our excitement with the realization that it may not actually happen.) When we got the call, I had a fruit juicer in hand,- which Benji had requested, but it was quickly placed on the shelf as we practically ran out the door. We quickly returned to the apartment. I was so excited and nervous. Couldn't think straight. Again, I'm so glad Allen was here, I can't imagine if I would have been here alone! We picked Benji and Tyler up and were at the hospital by 5:30. Benji's response was typical when it comes to these types of things- quite unemotional. As I've frequently said, I don't think he knows what all he's feeling at these times and it's even more difficult for him to articulate those feelings. However, though it was difficult to tell exactly how he was feeling about things, he was relaxed enough to be able to laugh with Tyler while we waited. His biggest complaint was that he couldn't eat and he couldn't get the steak he'd tasted the night before out of his mind. lol

He was taken back around 9:15 p.m. for his 8 to 12 hour surgery. We were able to be with him till he went to sleep and had a family conference call with Aaron, Cory, Grandma and Grandpa Troyer to pray together before they took him. (Again, both Allen and I are so grateful he (Allen) could be a part of that!) We are praying that God guides the hands of the surgeon and look forward to seeing him in the morning. He'll probably be asleep for at least a couple days, so we won't be able to talk to him but will at least get to see him. Though we are aware of what he will look like when he comes out, I don't know if there's any way to prepare yourself for seeing your child with tubes and wires coming our all over. They've tried to prepare us and told us he'd probably have 6 to 7 IVs in addition to everything else. We continue to trust God to carry us through this as well.

Pray for him in the coming weeks as well; while we are so excited and grateful that he's been able to get his transplant so quickly, he's still got a long hard haul in front of him.

We cannot express our profound gratitude and awe for the way family, friends , acquaintances and even strangers have faithfully been supporting our family (in every way possible) and lifting us up in prayer!! It is so completely humbling! Thank you, thank you, thank you! God has been so faithful and we pray he will be honored through all of this!

Until next time….

After surgery:

I want to first say, that in all our excitement, we have not forgotten that there are others grieving tonight. We're so grateful to the person who has chosen to offer life to another, while losing their own! Our hearts go out to their loved ones! We pray they were ready to meet the Lord!

And on our end...the surgery is over and Benji is doing well. We are currently upstairs in the ICU, waiting for him to come up from recovery. The surgeon told us that Benji’s lungs were full of scar tissue; in fact, while a normal person’s lungs are unattached to the chest cavity, (they’re kind of “floating” inside the chest cavity), Benji’s were attached nearly all the way around. This is why it was such a lengthy surgery- nearly 12 hours. A typical lung transplant takes 4 -6 hours!

We again witnessed another miracle! The surgeon told us the new lungs look great and they were a near perfect match! Not only that, one of Benji’s bronchi was significantly larger than the other, AND THE DONOR’S WAS THE SAME!!!! As the surgeon said, “It was meant to be.” Thank you Jesus!

Aaron, Cory, my parents and Dale arrived approximately 4:00 this morning; we’re grateful to have them here and glad they made it here safely! Will update again when we know more…

Later in the evening:

We got to go in to see Benji around noon-ish. As expected, he was sedated and seemed asleep; he also had tubes and wires coming out of everywhere! I believe there are 7 different access points, (for IV meds, gas exchanges and a couple other things), 4 chest tubes, a catheter, breathing tube, NG tube, as well as wires attached to numerous places to monitor progress. (I’ve counted 11 different patches.) When we first came in the room, we spoke to him to tell him Mom, Dad and all his brothers were there, that he had made it through surgery and that we loved him. Seeing him in this condition was difficult, but I was able to hold it together until I saw a tear well up in the corner of his eye, then stream down the side of his face. I wiped the tears and reassured him but so wished I knew what was going on in his mind!

I was wrong, when I said earlier that we wouldn’t be able to talk to Benji. While they are keeping him quite heavily sedated and he sleeps most of the time, we can speak to him and he wakes and tries to respond when we do. He has responded through motions and gestures but because of the breathing tube, he cannot speak. He has tried to open his eyes and has managed to do so a couple times, and has motioned with his hand a number of times. We’ve come to understand that when he picks his hand up, and tries to motion like he’s tipping a glass, he’s trying to tell us he’s thirsty. That has been the most common thing he tries to communicate and it’s sooo difficult because he’s not allowed to have anything to drink for now. I so badly want to quench that thirst- it’s the least I could do for him!

He’s tried to speak to us a couple times, but all he can do is mouth the words while we try to decipher what he’s saying. (That’s difficult to do when one can use the lips, but with the mouth propped open, it’s even more difficult.) Once I had him try to write the words out on my hand, and though he tried, and I was able to figure out some of the letters, I think his brain was too fuzzy to continue his train of thought. It’s been difficult to figure out what he’s trying to say, but once, the nurse said he was asking for me and between Allen, the nurse and I, we figured out he was asking what was happening to him ‘right now’. I tried to explain to him what had happened in surgery, that the doctor had said the lungs were a perfect match and the fit was perfect, what the tubes were coming out of his body, that we were trying to keep him sedated and pain-free, etc. That seemed to satisfy him. The best part of our communication has been that whenever I ask him if he hurts anywhere, he shakes his head “no”. While we’re delighted we are able to communicate somewhat, we’ve come to see it’s probably best to just let him sleep as much as possible. When he wakes is when he starts to become agitated and notices his thirst, etc.

Based on what we’ve been told, we expect him to stay in this condition for a minimum of 48 hours; however, it’s difficult to get a prediction from anyone regarding this, as well as the total amount of time he’ll need to stay in ICU; there are too many variables. Overall, we’re told he’s doing relatively well. He does have more bleeding than some, simply because the surgeon had to do more cutting than he would have had to with a healthier set of lungs. (Because the lungs were attached to the chest wall, the surgeon had to cut through the tissue to remove them, as opposed to simply lifting them out.) The bleeding is draining through the chest tubes, and has diminished somewhat by this evening. We’re told to expect a roller coaster ride for a while; that there will be ups and downs. We continue to covet your prayers, as this journey is in some ways ending, yet in other ways, only beginning.

Neither Allen nor I have gotten much sleep the last 24 hours. Mom, Dad, Dale and Cory went back to the apartment this morning around 6 and were able to get some much-needed sleep. Tyler and Aaron were able to catch some z’s on the floor in our waiting room; Allen managed to get a bit of sleep and I wasn’t a bit tired until about 6:00 to 7:00 this morning. For about an hour, I faded in and out and that was the extent of sleep I got until late this afternoon when I got about 1 ½ hours’ sleep. After greeting Benji in ICU, Allen took the boys to get something to eat, and then back to the apartment where they (the boys) all caught up on their sleep. Allen later came back and took my place while I went “home” for a while to clean up and try to sleep. This evening, I brought the boys back to tell Benji good night, and then took Allen’s place here while he went back with the boys till morning. We’ll probably be doing the tag team thing for a few days at least. Later today Mom and Dad got a room at a nearby hotel and went back up to see Benji late this afternoon. Dale stayed at the apartment with the boys while they went; we’re not sure how Dale would handle seeing Benji like this. I am so grateful they could be a part of this- I think they were also in a daze with it all.

That’s all for tonight as I’m struggling to stay awake… (and as many of you have instructed, I am going to try to get some sleep tonight, even though I’m in the room with him.☺)

Thursday, January 3, 2013 5:55 PM CST:

Most of today has been great, but we had one small bump.

I think I got about 4 hours good sleep last night and have felt refreshed most of the day, though much of it may have been adrenaline. Allen came this morning and I planned to go home noonish and come back late this afternoon or early evening, but it's not worked out that way. We were told this morning that they’re going to attempt to remove his ventilator today, and I wanted to be here for that. The original plan had been to start weaning him off around 10:00 a.m., but the time kept getting pushed back and it's now 6:00 p.m., it still hasn’t happened and I'm still here.

I mentioned earlier about how Benji had more bleeding than most; one of the first things the nurse said today when he came in was that he could tell a HUGE difference in what was coming out of Benji's chest tubes. In fact, I think the volume dropped 80 - 90 percent overnight; this was our first good news of the day!

Some of you may recall that when he was hospitalized here last November, they went through a process of desensitizing Benji to Bactrim. (Bactrim is an antibiotic that he’s allergic to, but that best treats one of his stubborn bacteria. Through a process of desensitization, they were able to get his body to accept the drug.) In order to make sure that old bacterium doesn’t affect his new lungs, they want to start him back on Bactrim, so around noon, they started the desensitization process again. Because of this, they pushed back the ventilator removal, and the current plan is to pull it at 6:30 tonight.

[I just took a break for the vent removal and then something else came up, and then I needed to do something else and then there was another thing I needed to do, and then….…… Now it’s 4 1/2 hours later and I’m finally able to finish (at least I hope so). ☺ And by the way, I never did make it home (to the apartment), so I just decided to stay for the night again, then Allen will come early tomorrow morning and I’ll go home and try to get some sleep for the rest of the morning. (Of course, plans are always subject to change, as we’ve seen a number of times over the last 48 hours. -Is that really all it’s been? Just a little more than 48 hours since this dream began?! It seems so much longer!)]

So, back to today… Numerous times throughout the day we had different staff commenting about how well Benji is doing! I guess for someone to get off the vent this soon after transplant is considered a speedy recovery. We also get shocked responses everywhere we turn at the speed of the transplant. When Benji and I had come for the checkups last Thursday, one of his appointments was with one of the transplant surgeons, whom we hadn’t met previously. In my conversation with him, he had told me he didn’t expect it to take “that long” for Benji to get his lungs- he would guess not longer than 8 months. Today he stopped by the room and made some kind of comment about how quickly this had happened, to which I replied, “Can you believe it?!” He said, “Way to make a liar out of me; I just told you 8 months!” ☺ We’ll take that kind of “lying” every day!

All day we felt we’ve been floating on a cloud; it all feels so surreal! And everything appears to be going so well; and better than expected! The PA (Physician’s Assistant) who was in the surgery room reiterated to me again this afternoon how perfectly these lungs fit Benji, and how the surgeon had talked about it during surgery. She said that sometimes the lungs are a bit too large for the chest cavity and at times they even need to cut off part of the lungs and staple them shut so they will fit. Other times they’re a bit too small and there’s concern because it leaves too large of a pleural space in the chest cavity. But THESE lungs fit perfectly. Thank you Jesus, thank you Jesus!

We’ve been warned many times that this will be a roller coaster ride; that not everything will go perfectly and we’ll have some bumps in the road. One nurse even guaranteed us there will be something that won’t go right. We had our first experience with that this afternoon when we were told he’d tested positive for a cold virus. This is a common cold virus that most of us wouldn’t have any problem with. However, because of his immunosuppressed state, it can become a more serious matter. Also, because it is a virus, there’s no way to treat it with medication, it will simply need to run its course. They have mentioned the possibility of giving him IVIG (*intravenous immunoglobulin) in hopes these antibodies have seen this particular virus before and built up a resistance to it. Of course this is something specific we’re asking prayer for- that his body will be able to fight this off. They don’t seem horribly concerned, yet it is a disappointment to them and us and a bit of a setback. Fortunately, he is not showing any cold symptoms and it did not prevent him from having his vent removed earlier than normal; so, maybe that’s a good sign.

We were so excited about being able to get that vent out of his mouth; for one, because it was causing him so much frustration in not being able to communicate what he wants, but more importantly, so we can help him quench his thirst. Even though we understand the reasons for keeping him dry and that this is another one of those things that we do because it’s best for him, it has really been difficult to watch him desire a drink so badly, have such a parched mouth, and not be able to give him something to drink. (At least we’re allowed to swab his mouth with water every now and then!) Benji was told this morning that they hoped to be able to remove the tube today, and several times, through hand motions and at times, much frustration, he was able to communicate that he wanted to know how long it would be till the vent came out so he could get a drink. I think this day must have seemed endless to him and the first words he said to us, after being able to speak once the vent was removed, were, “How long?”- Meaning how long till he can get that drink? Unfortunately, he’s still not able to have that drink, even though the tube came out more than 5 hours ago, they’re saying he won’t be able to even get some ice to chew until morning. (The reason they’re holding back on the drinking is because they’re concerned that he might aspirate into the lungs, which would of course not be a good thing; in fact, at first, they try to keep the entire body as dry as possible to limit the chances of fluids getting into the new lungs.)

In order to see how well he can breathe on his own, the vent was shut off approximately 5:00 p.m. Based on his response to this, the vent would then be removed. This was our first milestone –watching Benji take that first breath, all on his own, with his new lungs. What an incredible thing that doctors know how to perform this type of operation. And though we don’t know the family of the donor, I would love to express our gratitude to them for the incredible gift they have given us! I hope they realize that a part of the person whose loss they are grieving, is living inside Benji today, allowing him to draw in the air he needs to live! What a gift and what a miracle! To those of you who have been on the other end of our situation- I hope this also gives you some comfort in your loss.

Everything went well in the trial period and extubation (removing the vent) finally happened around 6:30 this evening. It was our 2nd milestone moment and Grandma and Grandpa Troyer got to be here to see it happen, along with Allen and myself. Once again, we saw him breathe deeply for the first time, with the new lungs, minus the feeling of trying to breathe through a straw. It’s really an interesting thing, watching someone take those first breaths and it’s something that can actually feel uncomfortable for them at first. They are not used to having lungs that expand fully and it feels different. Wow, what a blessing!!! Thank you God! We don’t deserve to be so blessed and we don’t know why you have given us this privilege, but we are so grateful!!! We believe it is only because of the prayers of such an army, that we have been able to experience many miraculous things in the past several weeks! May all of you also be blessed for your faithfulness in praying!

I also want to thank the many of you who have left us messages of encouragement! I so wish this had a Facebook format where I could “like” comments and respond directly to them. I simply don’t have the time to email each of you individually, so I’ll just need to thank you this way. :( You will never know how much you encourage us!

Tomorrow morning, Mom, Dad, Dale and our boys will be heading back home. Cory has a game tomorrow night- wishing you well Cory. I so wish I could be there and I will be in spirit! Speaking of this, another incredible blessing in all this is that Cory is not a senior this year. In fact, it would have been most probable that if he were, Benji and I would have had to miss graduation, let alone all the other things that come with being a senior! Now, there’s a possibility we may be home in time for both of Cory's Jr. and Sr. spring banquets, (our high school’s version of prom).

It seems like there was something else I had thought of that I wanted to say, but I’ll need to add it later if I think of it, because I need to try to get a little rest.

Until next time…

* Intravenous immune globulin (IVIG) is made of antibodies that have been extracted from blood donations from 3,000-10,000 healthy donors. IVIG is used to treat many autoimmune disorders, idiopathic diseases (disease of unknown cause), and infections.

Saturday, December 29, 2012 0:29 AM CST

It’s been a busy few days. Benji and I arrived in St. Louis Wednesday evening and were fortunately able to avoid most of the snow storm. I typically drive through Indy, but since there was so much snow predicted for that area, at Allen’s urging, I drove west to Chicago, then south from there. It was snowing quite heavily when we left home, but had pretty much subsided by the time we got to the Chicago area. (Yes Honey, you were right; it would definitely not have been smart for me to drive the way I wanted to come, since Indy ended up with around 7”.)☺

Wednesday night we stayed at the Parkway Hotel which is connected directly to Children’s Hospital and is where we had typically stayed when we came for check-ups. Thursday was a long day; we didn’t end up having a ton of appointments, but what we had were spread out all day and we did a lot of waiting. A couple things we found out on Wednesday: Benji’s lungs still appear to be leaking air, so for now, the chest tube will remain in place. There’s a good chance he will need to have that in until he gets his transplant, even if the pneumo appears to heal. They want to avoid as many procedures as possible from now till transplant, and there’s too great a risk of the pneumo returning, which would result in needing to re-insert the chest tube. Secondly, we will probably not have any more PFT results to report at this time. Since he does still have a pneumo and his lungs are obviously quite weak, the pressure of blowing when he does the PFT’s, could blow a hole in his lungs, which is definitely not worth the risk; so they do not plan to have him do any more before transplant! Just as a reference point, his last PFT was 27 percent and I’m sure it’s quite a bit lower by now.

One other thing, when Benji was hospitalized here, I had a lengthy conversation with one of the surgeons and at that time he told me he didn't think it should take Benji a long time to get his lungs. Silly me, didn't think to ask at that time what he meant by long; what seems long to us may not be to them. Wednesday, we met with a different surgeon so I asked him what he thinks the other one would have meant by that. Of course he said he doesn't know what the other surgeon was thinking but he doesn't think it should take Benji longer than 8 months to get his lungs. (This time does not include the 3 month minimum stay after transplant.)Evidently, what we think of as long is different than what they do.☺ We also know however, that those lungs could come today. This is one of our specific requests at this time, that we could get those lungs asap, so our family doesn't have to be divided so long. (I would have loved to see Cory win the Cougar Classic Championship along with the Clinton Varsity today!)

Benji was very tired by the time we finally left the hospital around 4:30, but arriving at the Ronald McDonald House apartment seemed to revive him a bit. I cannot express HOW GRATEFUL I AM to be in this apartment! I have thanked God so often for the way he worked this out for us! A very nice surprise was that upon entering my bedroom, I saw a picture frame that someone had placed on the dresser with a personal note that said, “You are covered in prayer”. At some point I'd like to find out who placed that there.

Of course I know God can protect us no matter where we live, but the idea of living in this big city alone is a bit intimidating. Following are some things that help me feel secure and some of the privileges that living here provides: we drive through a locked gate to get onto the premises; all entrances are always very secure and I hear the burglar alarm to the unit setting every night; I know there’s someone across the drive (or the hall) I can call in an emergency; I have people around who know our situation and care about us; we have a beautiful, relatively spacious, 2 bedroom apartment to live in for a great price; it is close to the hospital. I could go on and on. Again, God has blessed us so richly and we are so grateful to him and to all of you wonderful people who continue to hold us up in prayer!

Yesterday and today I began to familiarize myself with the place and got things unpacked and put away, (until Allen and Tyler came this evening and brought the rest of the stuff)☺ I also spent much of the day yesterday, talking with our new home health agency down here, getting things set up. By the time I did all of Benji's care (I was a bit unprepared for how much time it takes to do all that on my own), plus the other things I needed to do, the time passed very quickly and I didn’t get some other things done like I would have like to- like updating this sooner. Our next check-up isn’t until next Wednesday, so I’ll update if we learn anything new or if something else happens in the meantime.

Until next time…

Sunday, December 23, 2012 10:25 PM CST

Benji and I came home from Riley hospital this past Wednesday, the 19th, and got to be home for my family Christmas this weekend. Benji came home with his chest tube still in and on 2 liters o2. He wasn’t able to enjoy Christmas with his cousins this year like he would have liked; he tires very easily and his muscles are very sore, he has a difficult time getting around with his o2, he is sore from the chest tube and just doesn’t feel very good overall. However, at least by being here he doesn’t have to wonder what he missed. We hope to be able to be here yet through Christmas day, then Benji and I will move (with some of our things) to St. Louis on Wednesday, the 26th. Allen will be coming down that weekend and bring the remaining items. Pray that I can get my frazzled mind together, to be able to finish what I need to at home, figure out what I need to take, and get it packed before Wednesday.

We’ve had a few amazing answers to prayer this past week; the first was that we got to come home in time for Christmas. The next one was very unexpected and the last one was nothing but a miracle! A little over a week ago, I asked for prayer regarding where Benji and I will live in St. Louis. The place I preferred to stay was one of the two-bedroom apartments on the Ronald McDonald House grounds. These apartments are the cheapest and largest of the options we’re aware of, and they have the added benefit of a higher level of security (because it is a fenced-in, gated facility). Additionally, it has a built-in support group for Benji and me.

Just before I sent out the mass request for prayer regarding lodging, Allen had spoken to someone from the RMH who told him there was currently one unit available and another one would probably not be available until at least March. The empty one was to go to either us or another family, whoever got there first. Our original plan had been to relocate the first of January, but after Benji’s hospitalization for the pneumo, we had decided we wanted to go right after Christmas, the 26th or 27th. After hearing the other family was planning to get there on the 21st, we had a short discussion about whether or not we should rush down there earlier, in order to get the apartment. Of course, it didn’t take us long to know we would never feel good about that and decided to go at the time we had planned, making our lodging a matter of prayer and trusting God to find us a place to live- either there or wherever else he wanted us. I recall making a statement to this effect, “If God wants us to be in a RMH apartment, he’ll provide one.”

Well, I guess he wanted us there because to my delight (and surprise), Allen called me Wednesday to say he’d just gotten a call that another RMH apartment was going to open on the 27th! Wow!! What an incredible answer to prayer- and it was even the place I would have chosen! (We know there were many of you praying about this matter; thank you so much!) I drove home from the hospital on “cloud nine” (as we used to say); reveling in the way God had so obviously answered our prayer and honored our trusting his provision. Little did I suspect that later that evening, I would experience the most disappointing, most despairing emotions since Benji was listed for transplant in 2006.

Not too long after I got home, Allen called me to the bedroom and told me that as of now, there was no way Benji could do transplant because we no longer had any insurance coverage. He had found out that afternoon, (by accident), that Benji’s insurance company had dropped him October 1 of this year. Benji has had this insurance for 13 years; it is a high-risk pool, run by the state of Indiana, for people who can’t get insurance anywhere else. All the pre-approval stuff had been taken care of years ago and insurance coverage for transplant was the least of our concerns.

Last August, a social worker from Riley came to me to explain that Benji, because of his long-term hospitalizations, automatically qualified for Indiana Medicaid. This is evidently a fairly new program; no matter what the income level of the family is, when a child has lengthy hospitalizations, the state will cover medical costs for the child for the next year. When she told me about it, I referred her to Allen because he has always been the one who takes care of the insurance. After making sure that applying for this would not cancel Benji’s insurance and the Medicaid would be like a secondary insurance, we went ahead with it. We talked about how amazing it was that this came at this time- the year of his transplant, and meant we wouldn’t have any deductibles or anything to pay. Maybe God had provided for us in a way we had never even considered.

What Allen found out Wednesday afternoon was that we had received misinformation and in fact, Medicaid was now Benji’s only source of medical coverage and the insurance company was required by law, to drop him, as soon as he had any other type of coverage. They said they had gotten a letter from Riley stating that we no longer needed insurance for Benji. It was a big mix-up; everyone from Riley had only the best intentions and were trying to be helpful, but this became a literal nightmare!

On one hand, this Medicaid plan for the next year was a great thing because it is all-inclusive; the problem is that when Allen called St. Louis to tell them our insurance had changed, they were horrified and said that St. Louis Hospital did not accept Indiana Medicaid. This meant Benji would not be allowed to relocate for transplant, and as long as he wasn’t covered financially, we wouldn’t be able to do transplant at all. Indiana Medicaid would cover a lung transplant in Indiana, the problem is that there was/is no place in Indiana that does pediatric lung transplants. (Which is why we were originally referred to St. Louis.) With the way government bureaucracies work, it would take months to sort through the mess and figure out a way to get St. Louis and Indiana Medicaid together. The problem with that is that as quickly as Benji’s lungs have deteriorated the past 7 months, if he had to wait months to get listed, (and you tack on the time it could take to get his new lungs), he may not have that long to wait. (The current average wait time to get new lungs is a little over 9 months)

At first, Allen didn’t even want to tell me what we were facing, because he didn’t want to burden me with it and for the same reason, we didn’t tell our boys till after things were settled. Of course, Allen needed to tell me and he did and after I understood what had happened, we cried and prayed and cried some more. What an emotional nose-dive! God had just given us such an amazing answer to prayer by providing us with an apartment, and that seemed like such a confirmation that we are heading in the right direction, and now this! What in the world was God doing?! Insurance had been the last of our worries!! When Benji was originally listed in 2006, we were told if we didn’t have insurance to cover the cost, they couldn’t list him until we had at least $1 million cash. That was six years ago; who knows what that number would be today. Where were we going to get the money to get this done as quickly as we needed it?

After processing everything and getting myself together, I sent out a desperate request for prayer to a small group of people-mostly family, pleading for intercession on Benji’s behalf. Maybe that’s all God wanted through this; to cause us to fall to our knees before him, in desperation, knowing this was totally out of our hands and out of our control. Only HE could fix this problem!

You know God typically uses vessels to carry out his plans, and this time his vessel was in the form of our friend, Carlin Yoder, who is an Indiana State Senator. If I make a long, complicated story short, through Carlin’s involvement and contacts, and a flurry of phone calls for two solid days, Indiana Medicaid and the St. Louis Children’s hospital put a contract in place, and we were given the green light to proceed with transplant as planned, WITHIN 48 HOURS!!!!! In fact, by the end of Thursday’s work day, (24 hours after we found out about this), we were told it would probably work out, but things were not finalized until 5:30 Friday evening. You need to understand that this contract is something that typically takes months to negotiate and it determines the payment structure between Indiana Medicaid and St. Louis. We feel so blessed, and quite awed and humbled, at how many people, in so many places, were working so hard on Benji’s behalf. What a privilege to even be in a position to have a friend with the ability to get us access to the people we needed to talk to!!! We can NEVER thank you enough Carlin, for what you did for us!

Those couple days still feel a bit like a dream (a horrible dream), but whatever God’s purpose for all this was, it certainly brought us to him in utter desperation! And, the miracle we saw God perform before our very eyes was incredible! Once again, thank you so much for praying, not just those who knew about what was happening and interceded for us, but all of you who were lifting us to the throne! You are all a part of this miracle and we cannot thank you enough!

So, we are indeed going to St. Louis as we had planned. ::huge sigh of relief:: Pray for Benji and me as we drive down on Wednesday; Thursday, he has a full day of tests and “work-ups” so it will be a loooong day for him. We will however, need to stay somewhere else on Wednesday night because the apartment won’t be available until Thursday.

Signing off tonight- feeling so blessed and loved by an awesome God,
Until next time……

**An interesting detail in how God worked this out: Carlin had to do a little checking to find out who the first person was he needed to contact. The name he was given was a person he had just met the previous day!

Tuesday, December 11, 2012 9:54 PM CST

So this is the current plan…

The doctors, both here and in St. Louis, are trying very hard to let us go home for the holidays, before we relocate; so we’ve decided to try a temporary fix to get us through. The plan is to attach a Heimlich Valve or some type of chest drain valve. This is a valve that will be attached to his chest tube, which will allow air to flow out, but not in. This way, if the lungs continue to leak, the “air escape valve” should prevent another pneumo. I’m guessing the tube and valve will end up being approximately 1 ft. long and will be taped to his side.

However, before going home we need to make sure the valve will work, so today they put his chest tube back to “water seal” (see last journal entry for definition). It had been on suction again since Sunday, but as long as he still needs the air to be sucked from his chest cavity, he won’t be able to use the valve. Therefore, in order to test it, the plan is to leave it on water seal for the next 2 to 3 days. If the pneumo does return, he’ll need to go back to suction which would mean he won’t be able to use the valve, which would mean he most likely won’t be able to go home. If the water seal works, then they plan to attach the valve.

Once the valve is attached, we’ll need to stay here for another 2 to 3 days, to make sure the valve will work. Then, if all goes well, we’re hoping to be able to go home by the first to the middle of next week, in time for Christmas and hopefully for a couple weeks before we move. If the valve does work, and we’re able to go home and wait to move till the first of the year, we’re hoping that the leak will eventually heal on its own and the chest tube can be removed. Obviously, this is what we’d love to see happen and I ask for your prayers specifically in this regard!

If the valve doesn’t work, there’s a good chance we may need to go to St. Louis, where they may try something else; however if we end up needing to go to St. Louis, there’s no guarantee Benji will be able to go back home before transplant. If it doesn’t heal, it will present some additional problems that will need to be dealt with before transplant, but hopefully we don’t need to worry about that for at least a couple weeks.

Mentally, Benji’s spirits have remained amazingly good. His pain has greatly diminished and he’s on a very small amount of morphine; this results in him being much more awake and alert. Again, he’s being a “super trooper”! ☺

Until next time…

Prayer Request: Thank you so much for all your prayers! We have a specific prayer request, if you would again join us in praying. We are still unsure where Benji and I will be living when we move to St. Louis but there is a possibility that a Ronald McDonald House -2 bedroom apartment, may become available. We are depending on God to place us where we should be, but my pick would be the apartment on the Ronald McDonald House grounds; we are asking God to open that door, if that is his will. Please pray that God would help us find a place and show us which direction to go. Thank you!

Sunday, December 10, 2012 8:23 AM CST

Quick update: It looks like we'll be going to St. Louis tomorrow. The current plan is to call St. Louis first thing in the morning to verify what they want us to do. The transfer to St. Louis will be for the procedure to stop the leak in his lungs; we still don't know if this means we'll need to relocate before the first of the year.

As stated in the last update, the plan was to clamp Benji's chest tube on Wednesday; in fact, they didn't do it till Thursday. The pneumo that's evidently still there is so small that there was a slight disagreement among the radiologists on Thursday and Friday as to if there was one or not. The Thursday radiologist said there was none; however, though the chest x-ray purportedly looked the same on Friday, the radiologist that read it that day thought there was still a very small pneumo. Consequently, yesterday he was unclamped again and put back on water seal* (see definition below). Yesterday afternoon we were told that the radiologist’s final conclusion is that there is still a very small pneumo; and in fact, the nurses yesterday and this morning did see bubbles. So, as of this morning, he was put back on suction. I have a feeling there may have been a slow leak for quite some time, because he’s been complaining of his chest and ribs hurting for several months now. He did have numerous chest x-rays done to check for a pneumo, but if it is/was this small (and maybe smaller at the time), they may not have been able to tell.

Friday was Benji’s birthday; my “baby” turned 15. I can scarcely believe it! I think it was as good as a birthday in the hospital could be. It started on Thursday with a visit from Mom, Dad & Dale then a couple minutes after midnight on Thursday, the staff came to the door to sing happy birthday to him (yes, we were still up, as we typically are in here; at least we’re usually still awake at that time.) When we awoke in the morning, there was a Happy Birthday banner on his door with notes from the staff telling him happy birthday. Around 10:00, my brother Jerry and his family, along with my sister Roses’ daughter Malaina came to visit and bring gifts. Later in the morning, Child Life delivered a few presents from the hospital; of which one was a Colt’s blanket and another a PS Vita!!!! If you don’t know what a PS Vita is (which neither I nor Allen did either), ask your kids or grandkids- I’m sure they know. ☺ (I’ll just say this, it’s a gaming system that costs around $250!) We were quite flabbergasted when they asked us if we think Benji would like that! Of course, Benji was also surprised and delighted to get it, (as were his brothers!) What a generous gift!

Around noon, Cory and 3 of his classmates came down for a surprise visit; they’d been allowed to play hooky to do that. (Thank you Gail)! ☺ They stayed for a couple hours and later in the evening Allen came back down. Throughout the day, various staff members would peek their heads in to tell him happy birthday. As I’ve mentioned before, Benji of course loves when his brothers come and all three of them-, specifically because of his birthday, decided to come down this weekend. Yesterday afternoon, after Cory’s game near Merrillville, Tyler and Cory came down to spend the night here with us and Aaron is on his way here now. Allen’s sister Naomi , husband Ervin and their son Nick are also on the way down, our niece Ruth and two of her children also came with them. My brother Steve and his son Landon are also planning to come down and Allen’s brother Sylvan and wife Connie plan to stop by after the Colt’s game-, which they’ll be going to. (Lucky them!)

An interesting observation I’ve had: It seems Benji has now become a bit of a celebrity here in the hospital, because Andrew Luck came to visit him. The teaching staff also came up to wish Benji a happy birthday on Friday and it tickled me, that after singing happy birthday, one of the teachers- who we didn’t know, told us that though she doesn't know Benji, she wanted to come along to see who Andrew Luck’s newest “BFF” is. LOL!! As you would think, Andrew’s act of showing care and concern for Benji has deeply touched us, but I’ve been surprised how it has quite deeply touched the staff here as well. It’s not unusual to run into someone, anywhere around the hospital, who will comment about Andrew’s visit, and many choke up while doing so. While I know many here are touched because they know and care about Benji, Andrew’s interest seems to have a deeper significance for the hospital as well. We have been told that because of Peyton Manning’s contract with St. Vincent’s, (another hospital in Indianapolis), he was not allowed to come to Riley. Individual Colt’s team members would occasionally come through and after they won the Superbowl, the entire team and coaches-, except Peyton Manning, came through. Finally, a Colt’s quarterback has shown an interest in Riley! (And, not just any old QB; one who’s doing an amazing job filling Manning’s big shoes!)

One more thing: Thank you so much to those of you who sent Benji birthday cards this week. Because of the slow mail delivery system here at the hospital, he only received two prior to today, but today he received a stack. I'm hoping if there are more coming, we'll get them before we have to leave; (::fingers crossed::) however, if we don’t, they will forward them to our home.☺

I need to go for now but will update when I know more about what is happening in St. Louis.
Until next time….

*Water seal is another way to see if there is still an air pocket in the chest cavity; if any air is still in there, it can escape through the tube and into water, which will bubble. They take this step before clamping and after suction. (Suction is where they actually suck the air out of the chest cavity).

Update from Monday, December 10

So we didn't go to St. Louis today after all and we're now not sure if we'll even need to go before the first of the year,- which is when Benji and I plan to "relocate". We are literally taking it day by day while everyone figures out what the next step should be. Late this afternoon we were presented with a couple options; one is to relocate now and proceed with transplant as we had planned to do the first of the year. The other two are temporary, with the purpose being to get Benji through the holidays before moving. We are waiting to have some questions answered before we make any decisions. About the only thing I know for certain right now (which is of course subject to change at any moment ☺), is that we shouldn't expect any further steps to be taken before Wednesday. I will update when we have more information.

Tuesday, December 4, 2012 8:17 PM CST

Benji has been at Riley now a little over a week and his pneumo hasn’t healed. A person with healthy lungs will typically heal in 3 to 5 days after insertion of a chest tube. Based on Benji’s history with pneumos this doesn’t surprise us. I have seen some improvement in Benji over the last week; while he still has the chest tube, his pain has steadily decreased… which means he’s been able to back off the morphine… which means he’s been more awake and alert.

When diagnosing a pneumo, there is no way to know where the actual leak in the lungs is. The only way they are able to tell that there’s a pneumo is by the pocket of air that is visible on a chest x-ray. If the x-ray doesn’t appear to have the pocket and no air seems to be escaping through the chest tube they assume the pneumo has healed. In order to verify this, they clamp the tube, which blocks any more air from escaping the chest cavity. (This has the same effect as removing the tube.) Benji’s chest x-rays had looked clear for a couple days so on Saturday the surgeons clamped the tube. The hope was that they could remove the tube on Sunday. Upon hearing what they had planned, I asked them to give it a bit more time, which they agreed to do, because I figured the pneumo hadn't healed that quickly. I didn’t want the tube removed prematurely, and then have to make Benji go through the surgery again if the pneumo returned. Fortunately, they didn’t remove the tube, because the next two x-rays, following the clamping, showed a small pocket of air; subsequently, the clamp was removed and the suction was restarted. The plan is to clamp the tube again tomorrow morning and see what happens.

We certainly hope the pneumo heals on its own so we don’t have to go to St. Louis. Benji’s doctor told us today that if the pneumo doesn’t heal within the next couple of days, Benji will most likely need to go to St. Louis for a procedure to fix the pneumo. The doctors’ biggest concern is that because of the tube and the soreness he is unable to do proper chest treatments, which obviously, is not good for his lungs. If we do need to go to St. Louis, because of the chest tube it will probably be by ambulance and our doctor here doesn’t have any idea what St. Louis will want us to do afterward, in regards to relocation. (i.e. whether they will want him to stay for transplant now, or if he can go back home after the procedure, until the first of the year as we had originally planned.) So… everything is still up in the air and we know little more than we did a week ago. (Makes it a bit difficult to plan for Christmas or to prepare for relocation!!)

On a different note…. On Saturday, Benji’s oldest brother Aaron came down for a couple hours to see him and Cory, the brother just older than Benji (who just got his license a couple months ago), drove down here (by himself) and stayed until Sunday. (I can scarcely believe my third child is old enough for that!) I was very glad Aaron and Cory came but they really didn’t get to do much with Benji since Benji slept much of the time. On Sunday, two of Benji’s uncles, Sylvan and Mel, also came to visit. I’m looking forward to Allen coming down tomorrow, and staying for a couple days.

This afternoon, Benji got an early birthday present. (His birthday is Friday.) His present was a surprise visit from Andrew Luck, the lead QB for the Indianapolis Colts. (Although I don’t think Andrew actually knows Benji’s birthday is Friday.☺) Good timing though and right after the awesome game the Colts (especially Andrew) played on Sunday! When it looked like the Colts had lost the game they had an amazing come-from-behind win with only 4 minutes left in the game; and Andrew threw the winning TD pass with zero seconds on the board!

Benji just happened to be at Riley last October when Andrew came by to visit the kids on this floor; that was when he first got to meet Andrew. I was quite impressed with Andrew; he seemed like a really nice, down-to-earth guy and for some reason, he seemed to take an interest in Benji. (Maybe because when he came into Benji’s room, Benji was wearing a Colt’s hat; had a Colt’s blanket on his bed and a Colt’s pillowcase on his pillow.☺) A couple weeks ago, I got a call from Riley, asking permission to give information about Benji to Andrew; they said Andrew had been calling and asking about Benji. Before Andrew left the room today, he told Benji he’d see him again before he leaves for St. Louis. Of course we'd love that, but I don't know if he'll be able to make it, especially if we end up needing to go within this next week or so. I’m so happy for Benji and I am so touched that even though Andrew doesn’t really know Benji, he sacrifices his time by making a special effort to check on him and connect with him! Even if his only purpose was to make himself look good or for good PR, it would be nice of him; however, he seems to be doing this quietly, with no “hoopla” or PR people, which causes me to believe he's doing this out of the goodness of his heart. I would have expected that getting two visits from the Colt's QB would seem somewhat surreal, but he relates so well & with such ease that when you’re talking to him, you kind of forget what a big celebrity he really is. (Emphasis on “kind of”. lol)

We continue to ask for your prayers. Again, our desire is not to have to go to St. Louis at this time, but if God has a different plan, we are willing to accept whatever that is. We know there are soooo many of you out there regularly praying for Benji and our family and we can’t thank you enough!! The support we feel is incredible!

Until next time…

Thursday, November 29, 2012 1:57 PM CST

Short version:
Benji’s back at Riley with a pneumothorax (partially collapsed lung). He had a chest tube inserted on Tuesday, which allows the lungs to heal; we’re unsure of how long this will take, however, it has taken 3 to 5 weeks for his previous pneumos to heal. We don’t know at this time if this means we will need to transfer to St. Louis, nor if we do, when.

Long version:
So, here we are, back at Riley again with a pneumothorax (pneumo) - not at all what we expected to hear that night. Some of you may recall that he was thought to have a small one last summer, which would have meant Benji would not have been able to go to camp. However, the doctors then changed their minds and decided it wasn’t a pneumo after all, but something else. A pneumo, (which I at times for simplification, call a “hole in his lungs”), is actually a pocket of air inside the chest cavity, which if not taken care of results in a collapsed lung. The pocket of air is caused by a hole or a tear in the lungs, which allows the air to escape from his lungs into the chest cavity. As the air pocket in the chest cavity (which is airtight) gets larger, it increasingly compresses the lungs, making it more and more difficult to breathe. Even a person with healthy lungs can at times get a spontaneous pneumo; when for some reason- possibly a sudden impact- a weak area in the lungs will burst. It can also happen when something punctures the lungs. Benji’s lungs are so diseased and the lining of the lungs so weakened, that this is not unexpected or unusual.

The reason we were surprised he had a pneumo was that Benji had two pneumos in 2007, both of which had caused him a lot of distress. Unlike this time, in ‘07 he could hardly breathe and had tremendous pain in his chest. Over the years, whenever he would have any chest pain, our first question was always, “does this feel like a pneumo?” Over the last few months, he has frequently complained about pain in his rib area, the cause of which has puzzled everyone. X-rays did not show a pneumo and he wasn’t having the symptoms he’d previously had with his pneumos, so the best we could determine was that his muscles were simply sore from coughing. The last few weeks, it seemed the soreness had gotten worse, which resulted in limiting his ability to do his vest/percussion treatments. (For those of you unfamiliar with these treatments, it consists of either “pounding” by hand on the lungs, or wearing a vest filled with air, that vibrates. The purpose is to knock loose the thick, sticky mucus in his lungs so he can cough it out.) More and more he was complaining that doing the vest made him feel like he couldn’t breathe and Allen and I were becoming frustrated with our inability to get a handle on the problem.

Since coming home from St. Louis, Benji’s health has declined in other areas as well and he had started running low-grade temps the night before Thanksgiving. He continued having those off-and-on, as well as decreased oxygen levels and extreme fatigue. He had difficulty walking any distance and stairs were nearly impossible. One day he walked out to the mailbox to get something he had ordered and collapsed on the way back in, unable to make it the whole way. On Monday, I called down to Riley to see if we could move his follow-up appointment to this week, instead of waiting until the 6th, when he was scheduled. After hearing the symptoms, the Dr. said she wanted us to come down that evening yet.

Well! This was quite unexpected! I had started a project on Saturday, that I had been determined to finish before moving to St. Louis and had the entire basement torn up and looking like a tornado had hit it! Talk about feeling emotionally overwhelmed and drained! Not only did I have the house torn up, we felt there was a good possibility that Benji and I will be needing to relocate to St. Louis immediately (or at least within the week). How in the world was I going to get the house in order and prepare for St. Louis?! Allen was fortunately able to take Benji down that evening, and in order to finish some things before going, I planned to go a couple days later. Shirley, my dear sister-in-law, had offered to help me with my project and bless her heart, ended up spending two days working on it- mostly by herself- while I worked on other things to prepare to come down here and possibly to St. Louis. She certainly earned some more jewels for her crown in heaven those two days! I cannot thank her enough for sacrificing her time to help me in that way!

On Tuesday, Benji had a chest tube placed. This is the typical treatment for a pneumo; a hole is cut into the chest cavity and a tube is placed in order to suction the air out of the chest cavity- this allows the lungs to expand, thus preventing a collapsed lung. A small pneumo in a healthy person can at times heal itself within a matter of days, without a chest tube. Larger pneumos typically require a chest tube while the body heals the hole/tear on its own. In Benji’s case, he has previously had to have the chest tube in for weeks before the lungs healed.

Once again, we’re playing a wait-and-see game, without any clear idea of what we’ll be doing in the near future. Of course, our doctor here has been in contact with St. Louis but we still haven’t heard what they’d like us to do.

We again ask for your prayers-
-For healing and peace for Benji and a heart that continues to stay soft towards God
-For wisdom
-For strength for us all- both physically and emotionally- to go through whatever God will be asking of us
-For comfort and peace for Allen as he plays the single father and husband at home
-For Aaron, Tyler and Cory as they deal with what all this means for their brother and once again, a disrupted family.
(Benji and I have both been at home 76 out of the last 183 days)

Until next time….

Thursday, November 22, 2012 7:23 PM CST

I’ve needed to update this ever since we’re home from St. Louis but WOW- life at home sure is different than life in the hospital! No time for computer, even Facebook! :) It is so good to be home though and Benji and I are both so grateful to have been with family for Thanksgiving.

Benji and I came home on the 12th of November, after having been at St. Louis Children’s hospital for 2 weeks. He came home on four antibiotics, two of them IVs; which felt quite overwhelming. He’s been on one IV for the last year, but it only needed to be done twice/day and hadn’t been that big of a deal. This second IV needs to be 4/day, which, if all were spread evenly throughout the day, he’d be doing one every four hours. (Each one takes an hour or so to run through which meant the longest he’d be without an IV would be 3 hours). Fortunately I’ve been able to schedule them so he has two 5-hour periods free from any IVs- which also gives Allen and I one 5-hour period during the night without getting up to do an IV. It hasn’t been as difficult as I feared and as with everything else we’ve gone through, God has poured out his grace at the moment we need it and given us the strength to do what needs to be done.

Benji has been going to school part time since we’re back and the school has been WONDERFUL in their response to our situation! The administration, students and patrons have been SO supportive and have felt more like a family than a school. Gayle Schrock, the administrator came up with the creative idea to have “Benji Bands”. There are four wristbands the kids pass around from day to day and whoever has the bands communicates with Benji during that school day; they are allowed to do this using their phones to text or by email, Skype, etc.

They’ve also been so gracious in regards to his school work and are doing all they can to make things as easy as possible for him. Another thing Gayle told us is that they are planning to make podcasts of all Benji’s classes, which he can then upload at the time of his choosing when we’re in St. Louis.

And yes, plans are moving ahead for transplant. The tentative plan is for Benji and me to relocate (move) to St. Louis the first of the year; unless of course, his condition miraculously improves or his condition worsens. If his condition does worsen, we will need to move sooner however, if it significantly improves we will be able to put off transplant for now. However, he will need to be on these two IVs, no matter how long it is until transplant.

Right now I think our biggest prayer requests, aside from healing for Benji, is that one of the Ronald McDonald House apartments would open up by the first of the year. There are eight 2-bedroom apartments on the RMH premises, made specifically for long term families but aren’t always easy to get into. The price to stay there is quite reasonable and considerably less than anywhere else we would stay; it also seems like it would feel safer for us to be there by ourselves. If one of those don’t become available we’re not yet sure what we’ll do, but the hospital social worker will help us find something. Allen and the boys hope to be there as much as possible but will need to work around schedules at home, including work, school and basketball schedule.

Benji did run a temp last night and again this morning but hasn’t had one all day. If it comes back, we’ll need to contact the Dr. and there’s a good chance they’ll want us to move sooner. As a result, I’m feeling rather pushed right now to get things done at home as soon as possible so I’m ready if we need to move sooner.
I’ll update again if anything changes, otherwise you probably won’t hear anything until we move.
Thanks for checking in….

Friday, November 9, 2012 5:53 PM CST

There is some good news. The good news is that the current plan is to come home on Monday (yay!). His PFT on Tuesday came up slightly to 29which was a pleasant surprise and gave us a teeny bit of hope that his numbers might come back up and transplant could be postponed; though the doctor has little hope that this will happen. I believe he’ll be doing another PFT on Monday before we leave and I’m anxious to see if that number has gone up at all.

We also have something new to consider. Benji will be coming home on two IV’s- one will be twice/day and the other 4/day. This will mean Benji will need to be on an IV nearly 24 hours/day, and he will need to do this until transplant, no matter how long that is. Obviously, this will hinder his quality of life, which could play a part in the decision whether or not to go ahead with transplant. If we do go ahead with transplant, Benji said he’d like to wait to relocate till after Christmas, which if possible, would be great!

We’ve had some extensive conversations the past week with the transplant team, refreshing us on what all it will mean if we do proceed with transplant. (I was glad Allen was able to be here for some of it.) It has been six years since Benji was listed and not only have some things changed since then, we also needed to refresh our memories on what all this means. Benji was only eight at the time he was listed and couldn’t have cared less about the details. Now, he’s 14 and it’s a whole new ballgame. “Not thinking about it” seems to be a natural coping method for him, but at this age he doesn’t have the luxury of not thinking about it; he needs to know what to expect. We already knew most of the info but it was quite sobering to be reminded of what all transplant means. Obviously, transplant wouldn’t be given as an option if there was no benefit, however Benji’s life will not be simple and carefree after transplant and the Transplant Team’s goal is to make sure we are prepared for it and can never come back and say we didn’t know what all it entailed.

We’ve always known and been frequently told over the years that transplant IS NOT A CURE; it is trading one set of problems for another in hopes that the new problems will extend his life and improve the quality of his life. If all goes as planned, he will no longer need to do his vest treatments and hopefully he’ll also be able to get rid of his g-tube. He should have good, healthy lungs which allow him to participate in things he hasn’t been able to do previously. He will no longer have Cystic Fibrosis in his lungs, (which is a wonderful thing), however, it doesn’t take the Cystic Fibrosis away in the rest of his body. He will still need to take oral enzymes in order to get any benefit from his food and we’ve been told he will undoubtedly develop diabetes; however, these things are manageable. Probably the most difficult thing for him is being away from friends and family after moving to St. Louis. Fortunately though, he will most likely not need to be hospitalized while we wait.

Following is a partial list of some additional non-desirables that come with transplant, for the rest of his life:

- Taking lifesaving non-rejection drugs
- Side effects from the steroids
- Being be more vigilant in avoiding bacteria and germs (the anti-rejection drugs cause his immune system to be compromised)
- Inability to do some things (i.e. needing to avoid any types of mold. This includes things like caves, basements, hay, etc., etc. which means he will never be able to go on a hay ride and while he can be in a basement, he cannot live in or have a bedroom in one)
- Some other things he’ll need to avoid: dust, gardening/ working with dirt, birds and bird sanctuaries, reptiles, as well as some other things
- Monthly blood draws
- Frequent testing such as CT scans, PET scans, x-rays, etc.
- Daily PFTs, which he’ll be able to do at home
- He’ll need to put a lot of thought into traveling (i.e. being aware of where and how far the nearest hospital is, and if it’s another country, where the nearest large hospital is).
- Any type of abnormal health issues (i.e. fever, sniffles, vomiting, etc.) may result in needing to go to St. Louis

Additionally, as some of you know, survival statistics are quite sobering and are the reason one doesn’t do transplant until absolutely necessary. Currently only 50 percent survive five years post-transplant. This, sadly enough is a statistic that has not changed in the last six years though there has been some improvement in understanding and treating the cause of the relatively high failure rate. If rejection is going to be a problem, it will most likely happen within the first year or so. Rejection however, is typically not what takes the life of the transplant recipient; it is something called Bronchiolitis Obliterans (BO for short). One out of every two lung transplant recipients develops BO which is a different type of lung disease; this is a disease that causes the outer bronchioles to turn into something described to us as “cement-like”. We pray Benji does not develop this new disease, however, if he does, the quicker we catch it the better.

Please pray for our whole family as we make some major decisions in the near future and that Benji would be able to make at least one friend here or that God would provide a way to make up what he is missing at home.

Until next time….

Friday, November 2, 2012 9:15 PM CDT

Tuesday, October 30, 2012 9:42 PM CDT

THE FOLLOWING IS THE ORIGINAL INTRODUCTION WE HAD ON THE WEBSITE, DETAILING WHAT BROUGHT US UP TO THE POINT OF NEEDING HOSPITALIZATION IN OCTOBER, 2004.

I AM POSTING THIS FOR THOSE OF YOU WHO MAY NEVER HAVE READ THIS. THE REST OF HIS STORY IS RECORDED IN THE JOURNAL ENTRIES.

*****THE ACTUAL JOURNAL ENTRY FROM TODAY, OCT 30, 2012 IS BELOW THE INTRODUCION*****

INTRODUCTION:
Benji was diagnosed with Cystic Fibrosis as an infant but had fortunately been able to stay quite healthy the first 6 years of his life. Benji is now, almost 7 years old and unfortunately, the past 7 months have been rather rough. In April, this year (2004) he was admitted to the hospital to have his first picline inserted into his arm. He only needed to be there 2 nights then we were able to take him home to finish out a 2-week course of antibiotics there. (A picline is a semi-permanent IV that allows us to inject his medications at home instead of needing to be in the hospital.) By the end of the two weeks, he was doing better and was taken off the antibiotics. Now however, looking back, it seems ever since that time he has not been quite as well as before. This is the first summer he has needed to have any antibiotics; he typically only needed some through part of the winter.
By the end of September, we could tell that Benji was not doing well, so when we took him to CF clinic on September 24 (something he goes to at least every 3 months). We were expecting to and were not surprised that he was admitted to have another picline inserted. This time however, Benji remained in the hospital 6 days due to a low-grade fever that puzzled his Dr. since his sputum tests did not seem to show anything major. After 24 hours without a temp, they sent him home. We finished out his 2-week course at home but this time he didn’t seem to bounce back as he had before.

The Doctor then ordered a bronchoscopy: an outpatient procedure in which, after putting Benji to sleep, they go down through the nose and into his lungs to get a biopsy of his mucous. One week after the bronchoscopy, on October 22, two weeks after Benji had finished up his first round of antibiotics, he was again admitted to St. Joe Med Center in South Bend with a possible diagnosis of TB. His bronchoscopy had shown the presence of “acid fast bacilli” which can cause TB but can also cause a variety of other serious diseases. The medical staff seemed to assume he had TB and though TB is extremely rare, it was the most likely of all the other possibilities since they are even less common. We also figured the test results would be positive for TB since his symptoms so perfectly matched the symptoms of TB: high fever, sweats, constant fatigue, cough that won’t go away, loss of appetite, weight loss, stomach cramps; he had them all.

Anyway, the Drs. began treating him for TB and he was put into isolation and on five different antibiotics plus a few other meds. You would think with all that medication he should have gotten better, but instead his health began declining, rather rapidly! His temperature chart looked like a row of huge W’s; it was constantly up and down. Usually his temp would go below normal and he would start chilling; nothing could get him warm. Then after some time his temp would spike up to as high as 105! After he would come back down, he would go into sweats that would drench his sheets. After varied periods, the cycle would begin again. During his fevers, he was pretty lethargic and listless and complained of sore muscles and joints. His heart rate, which was typically around 130-145 bpm while resting, would go up during fever spikes. During his fevers his oxygen level would drop as well.

The longer we were there, the worse he got. His fever spikes increased, his heart rate climbed, his oxygen level declined, his appetite became “nil”, he slept more of the time, his color worsened, his weight dropped (5 lbs. in 4 days, which caused him to become weaker and weaker, and his cough worsened to the point that it was difficult to have to hear it! It sounded like it was tearing up his chest and he would finish with a sort of crying-scream.

Finally, on Thursday, October 28, we got our test results, which turned out to be negative for TB but positive for what are called “rapid growers.” We are now waiting on test results to find out exactly what kind of “rapid growers” he has. Hearing he didn’t have TB brought mixed feelings: surprising relief at being taken out of isolation, we hadn’t realized how much that had been weighing us down, and relief that he didn’t have TB. However, at the same time, there was a sense of disappointment at not knowing what was wrong with Benji after all. In many ways, it was much easier to know what we were dealing with, even when it wasn’t good, than to have all the questions about what was happening to him and if anything could be done about it.

After seeing the test results and conferring with the head of the cystic fibrosis department at Riley Children’s Hospital, Dr. Harris, Benji’s CF doctor, made an immediate med change and referred us to them. He told us that in his 18 years of dealing with “cystics”, he had never had to send anyone to Riley, but felt he didn’t know what else to do with Benji. He said he, (Benji) had “a lot of weird junk” in his lungs, and he had never seen these bacterium, (rapid growers) in any of his patients. It was decided that we were to be transported by ambulance as early as possible, the next morning.

Even though at different times through that week we had had some very emotional and fearful feelings as well as questions to deal with, that last night in South Bend was the darkest and most hopeless. Benji’s fever spiked to 105, which had happened before, but this time his heart rate also spiked to 199 bpm. His heart felt like it was going to beat out of his chest. The previous week had been a roller coaster ride of emotional ups and downs; sometimes we even rode that roller coaster a couple of times in one day, but that night we struggled with a real sense of fear for Benji as to whether or not anything could be done to help him! He spiked two to three more temps that night but not quite as high as the first nor did his heart rate go quite as high. It stayed closer to 170 bpm. The next morning, before leaving for Riley, we had an anointing service for Benji.

Since being at Riley, we are seeing a definite improvement in Benji though he is still a very sick boy! We don’t have any more answers than we did, however, it feels very good to know we are in the best hands possible. The doctors here put him on a new regimen of antibiotics and some other meds; including some to lessen the possible side effects of some of the antibiotics. One of Benji’s nurses said she figured Benji’s med regimen was in the 90th percentile for amounts of medication being given in this hospital. I’m not certain of the exact number of meds he’s on but I was told he’s on eight different antibiotics. The idea is to cover a wide range of possible infections, while waiting for test results. As some of these are ruled out, certain ones can be removed. However, he will need to be on at least a couple for nine months to a year.

He’s still spiking some temps, but they don’t typically go as high and his heart rate seldom goes over 155 bpm. There are occasions when his oxygen level is good enough that he can go for short periods without any help. His cough has somewhat improved. It is still not good but it seems to have loosened up some and is not quite as gut wrenching. He is awake more of the time though he’s still quite tired during a lot of that time. It seems he has a difficult time sleeping at times, even though he’s very tired; we’re guessing it’s probably one of the side effects of his antibiotic cocktail. He’s also still quite weak and is in bed basically all the time; he hasn’t had enough energy up till now to do much of anything, even though he’s gotten some great gifts to keep him from getting bored during his hospital stay. His appetite has not improved much and we’re still working to get some food and nutrition into him.

We also got stuck in isolation again although this time it’s not as confining since he can have visitors. I believe the isolation is also as much for his benefit as anyone’s; since his immune system seems to be quite suppressed; he’s being protected from any new germs he could contract. On Saturday, he was put on restricted visitation, limited to two people at a time with visits no longer than 5 minutes. That seems to be about as much as he can handle most of the time right now.

We want to thank all of our family, church family, friends and neighbors who have been so supportive during this time. We are truly blessed! We want to thank you too for all your prayers and would ask that you continue to pray for us. In your prayers, please remember Benji’s brothers as well: Aaron, Tyler and Cory. This is also a tough time for them with their little brother, sick and far away in the hospital. They also have to deal with disrupted schedules and a lot of questions and fears about the unknown.

*****************************************************************************************

Tuesday, October 30, 2012 Journal Entry

Well, this was quite an unexpected turn of events! Benji’s checkup in St. Louis was yesterday (Monday)and from our conversation with the Riley doctor last week, we were under the impression we would not be staying. Therefore, we came with the expectation of returning home last evening but instead, Benji and I ended up staying in St. Louis and Allen returned home alone.

As I have talked about in previous updates, there has often been discussion about the possibility of desensitizing Benji to Bactrim. There are different antibiotics he responds to, however, Bactrim is the drug that best treats one of the bacteria in his lungs; the problem is he’s allergic to it. There is however, a possibility that his system can come to accept the drug through desensitization. This consists of giving him the smallest amount possible, under close observation, and slowly increasing it to the needed amount.

The doctor from down here said he’d like to hospitalize Benji for a couple weeks and try the Bactrim treatment, while at the same time allowing us to get to know the St. Louis team and hospital. This time will also be used to review what all transplant means- that’s especially important with Benji as he was only eight when he was originally listed. At 14 he needs to be involved in the discussions and decisions; we won't proceed with transplant unless/until Benji is on board with everything. However, Benji is still too young to have the responsibility of such heavy decisions on his shoulders; we’ve found that while it’s good to talk things through with him and have him involved in the conversations, when it comes down to actually making the final decisions, he needs us to do that.

We weren’t too sure what to think when we were presented with the idea of staying but after talking about it by ourselves, (Benji, Allen and I), we decided this would probably be the best way to go. The one thing Benji had mentioned to both Allen and I, prior to coming here, was that no matter what happens regarding St. Louis, he wanted to be sure he was home over Thanksgiving, (so he could be with family). When making the decision to stay now for the hospitalization, or first going home to get our things, (because we didn’t come prepared), we decided the wisest thing to do is stay now, so we can be sure to be home by Thanksgiving. We figured that Benji and I would be able to make it with what we have till the weekend, when Allen could bring down whatever else we needed. However, I found we could sure use some of those things a bit sooner (one being my air mattress, since I woke up with a backache this morning) :) So, my dear Mother and Father (and Dale) are planning to come down tomorrow and bring the rest of our stuff! (Thanks Mom and Dad for being the kind of parents I can feel free to call on in times like this!) This also relieves some of the pressure on Allen; he’s got so much on his shoulders- trying to keep the business and things going around home, while at the same time wanting and trying to be with us as much as possible. The plan is still for Allen and Tyler (and maybe Cory) to come down over the weekend; however, this distance thing is a whole new ballgame. Indy is 3 hours from home- this is 7, so we probably won’t be able to see them, and others, as much as before. I believe all those weeks and months at Riley have served to prepare us for this time of separation.

The idea of staying was again so disappointing and EXTREMELY difficult for Benji to accept, but once again, I was amazed at our dear son! By the time we were admitted and taken to our room, he was in really good spirits and was quite chipper while relating to the staff. I have to say, the idea of being hospitalized here caused some anxiety for me! We are so familiar with Riley, and are so comfortable there. Here, we don’t know anyone, don’t know where anything is, and have no idea how things are done here. It’s a really weird feeling! It was such an odd feeling when one of the RT’s first stopped in the room to say hi and mentioned Benji being a “new kid”; at Riley, everyone knew him. We found the rooms aren’t nearly as nice as Riley’s new hospital rooms (as it’s an old hospital) and the other accommodations aren’t as nice as Riley’s. However, the room is a little larger, the staff has been very nice and we’ve been quite comfortable here; AND they don’t have the stupid (new) Riley rule that the parents and people staying in the room have to wear gowns and gloves 24/7! (Not that we did all the time at Riley anyway- teehee- but at least here, we don’t have to feel "guilty" for not doing it) :)

There is a possibility that the Bactrim treatment will bring his numbers back up and if they do come back up, we may be able to continue pretty much as we had been prior to last June. However, if the numbers don’t come back up, it most likely will mean relocation and transplantation. (By the way, his PFT yesterday was 26 percent- so it was a little higher than his last one.) Relocation means exactly what it sounds like; Benji and I will need to move here to St. Louis so that he is nearby when a pair of lungs becomes available. We will need to wear pagers so we can be reached at any time. The reason we need to be so close is because, according to my understanding, there’s only a four-hour window from the time the lungs are “harvested” to the time they are put inside of Benji.

If we do need to relocate, there are obviously a lot of things we will need to work through- in regards to our business, Allen’s and the boy’s schedules and how to divide his time between home and here. Once again, this will also mean separation from the other boys- which I hate- but the picture looks so much better than it did six years ago, when he was first listed! At that time, the other boys were 15, 13 and 10; what a difference 6 years makes! 21, 19 and 16 looks a whole lot different and doesn’t feel nearly as disruptive and difficult to manage as it would have then! We feel blessed for having been granted a reprieve for at least that long. Please continue to pray for Benji and us as we make some big decisions regarding the future. Continue to pray for Benji’s healing, but ultimately for God’s will to be done.

Until next time….

Wednesday, October 24, 2012 9:32 PM CDT

Yesterday’s PFT results were very disappointing. After having jumped 3 percentage points last week, we had hoped that might have been a sign Benji is on the way back up; however, they were back down one point- from 25 to 24. ( It was once again quite discouraging for Benji and we spent a lot of time afterward crying… and… praying- asking God to keep our hearts soft toward him whether or not we understand. From our human standpoint, this is so wrong and simply not fair! Benji shouldn’t have to go through this!! Why can’t Allen or I bear this for him? The only thing we can cling to is the knowledge that God has all things in his control! There must be some reason God chose to allow Benji to have this disease, which is part of what I talked to him about. God “knew” him in my womb and formed him into the unique person he is and evidently, there IS a purpose for this. (I have to say however, life would be so much easier if God would give us just a slight hint what that might be.)

Now for the GOOD news: we will most likely be going home TOMORROW!! The docs here have concluded that they probably won’t be able to get his lung functions any higher by continuing treatment here and Dr. Howenstein wants him to be able to be home for a little bit, before his St. Louis check up this Monday. When she came into the room this morning, it was with the intention of releasing us today, but when she got here, he was experiencing a severe stomachache, which is something new this visit. Because of this, they wanted to check out a few things before releasing him; we should know for sure in the morning.

Dr. Howenstein told me this morning that at our St. Louis visit, we will be presented with a few different options; one being relocation. This means he would be reactivated on the transplant list and we would take steps to move toward transplant. Dr. Howenstein didn’t know what the other options would be. At this moment, I feel a sense of peace about moving ahead with transplant; however, each one of our family has a lot we need to sort through.

Thanks again for your continued prayers and support, and I will update when we have a better idea what the next steps will be.

Blessings to you all!
Cindy

Wednesday, October 17, 2012 9:45 PM CDT

Oh wow! I just realized how long it's been since I updated. My last post said we'd been here 2 weeks; today is 4 weeks. Monday I was again reminded that all of life is relative, including our trials. I passed a couple women in the hall; one was crying while trying to talk on the phone, the other (I think her mother) was standing there with her. As I got closer to them, I could hear the one on the phone sobbingly telling someone that she needed to make a decision whether to take her daughter off (some type of machine). As I passed, she was saying, “I have to decide but I just can’t let her go; I just can’t let her go.” Instinctively, I turned to go back and ask if I could pray for them, but the “mother” informed me they were already late so they needed to go. I said that was fine and told her I’d pray as I walked. The tears rolled down my cheeks as I said a prayer for them and thought about what that poor mother must be going through. I was again reminded that as much as we hate what Benji has to go through, and as hard as it is at times, we have much to be grateful for!

Typically, when we’re in the hospital, Benji does his PFT’s twice/week. However, since his numbers have been so low, we’ve only been doing them once/week in an attempt to save him some discouragement. Benji’s PFT’s last week, were even worse than the previous; they were 22 percent. Again, it was quite discouraging for him. Before doing PFT’s yesterday, I tried to get him to express his anxieties (w/o much luck) =), and then prayed with him that God would help him do the best he could; but that no matter what the results He would give us peace, and assurance to know that God is in control- ultimately He knows what is best and His will WILL be done. We were delighted (and I think I could see some relief in Benji’s eyes) when he brought his PFT’s up to 25 percent! Again, everything is relative. When he came in with a 25 last July, we were horrified; however, yesterday, we were just glad it was higher than last time. :) One more positive sign is that he’s been able to be off day-time oxygen the last several days. Of course, our hope is that these are indications of the beginning of a slow improvement. however, we just don’t know what the future holds.

Benji has an appointment scheduled for St. Louis the end of this month. Unless he has a sudden improvement, there’s a good chance he’ll need to transfer from here to St. Louis at that time. Our hope is that he can ultimately bring those numbers back up, but if not, it’s quite probable he will be re-activated on the transplant list. If that happens, it will mean that Benji and I will need to move to St. Louis- it’s impossible to know how long we’ll need to live there, but we’ll have to be there until he gets a lung (which could be as much as a year or more), and we’ll need to stay at least 3 months after transplant.

The possibility of transplant is something I, and Allen, have been talking about with Benji over the last couple weeks. For me, while the thought is still concerning, I am feeling a peace about it. I think it’s hard for Benji to know how he feels about it; he seems rather ambivalent. On the one hand, it’s a massive and scary procedure and there is risk involved; on the other hand, if it’s successful, he will no longer have CF in his lungs; which, if things go well, will mean no more breathing and vest treatments, probably no feeding tube and, he will be able to be as active as he chooses, without getting out of breath! Of course, we know that any of us could be taken at any time, and none of us is guaranteed another breath; but there’s something about proceeding with transplant, that feels as if we’re losing some control. The current survival rate (5 years post-transplant) is only 50 percent and I believe Allen described it best when he said it feels as if the timer will be set, the moment Benji has his transplant.

On another note, Benji had a boost this weekend when his friends Nate Stutzman and Alex Miller came down with Allen on Saturday and stayed in the room with us for the night. Cory and Tyler had gone to the Notre Dame game and weren’t able to come so we were happy it worked for Nate and Alex to come along. Aaron and Jordan Garber stopped in for a little while on Saturday as well. I don’t think there’s anything that boosts Benji’s spirits more than seeing his brothers and friends! Once, when I met his nurse in the hall, she told me she couldn’t believe Benji; he was like another kid. It really is true! The staff here often doesn’t really see Benji laugh and have fun. He’s nearly always polite and kind but he typically doesn’t interact with people during the week, in the same way he does when his brothers and friends are here.

Jim and Shirley, my brother and sister-in-law, stopped by on Sunday; while they were here, Shirley presented Benji with a fun plan. She came up with a really creative idea to help Benji pass his time down here. Every day or two, she texts Benji a trivia question that he needs to answer. He can Google or call people- whatever he needs to do to figure out the answer. Shirley has promised him some type of prize at the end, if he answers them all. Benji’s been having fun with that this week. Thanks Shirley- what a great idea! :)

Of course, Benji has heard from many friends and family regarding his meeting Andrew Luck and I put the picture of Benji and Andrew on his door with a label saying "Benji’s Room". It’s been fun to hear staff and others respond to the fact that Benji got to meet him and often they tell Benji how jealous they are of him. Benji’s primary pulmonologist told him this morning that she’d like her daughter to marry Andrew and asked if Benji would be willing to set them up; Benji didn’t seem at all interested nor did he play along! He lets on with everyone as if it’s no big deal… (ya, right!). LOL I really don’t think however, that he understands how much good meeting Andrew did him, - especially that day, at that time!

Thank you for the many, many prayers you have prayed for us and we again ask for your prayers. Please pray for peace for us all; for wisdom for the doctors and of course as always, healing for Benji. :)

Until next time….

Friday, October 5, 2012

We’ve been at Riley now for 2 weeks and it looks like we are even half way through this visit. We know that we’ll be here a minimum of 4 weeks and most likely longer. Benji’s best PFT on Tuesday was only 24 percent, a huge disappointment for him! I could tell he was already discouraged when we went for the test; it appeared to me as if he thought if he didn’t allow himself to care about the results, it would save him dealing with the disappointment if they weren’t good. Of course, he was very disappointed and I think he was fighting back tears all the way to the room. (Which means Mom was shedding tears as well, as usual!) :-)

God has such creative ways of helping us through trials, doesn’t he? As I pushed Benji into the unit, I saw there were some people standing in the doorway of a patient’s room, and from past experiences here, I could tell it was somebody “special”. We rolled past and I asked a staff member whom it was; I was shocked when she said it was Andrew Luck. I don’t keep up on football much anymore, but I knew from hearing Allen and the boys’ talk that Andrew Luck was a star football player. (In fact, he’s the quarterback for the Indianapolis Colts and just stepped into Peyton Manning’s place this season.) Benji is a pretty big Colt’s fan and on his hospital bed are a Colts pillow and Colt’s blanket and he was wearing a Colt’s hat.

When I heard who it was, I bent over and said excitedly to Benji, “Did you know that was Andrew Luck?” He just kind of shrugged and despondently answered yes, but he didn’t want him to stop by our room. I knew it was his discouragement talking and told him I was sure he would wish later that he had; and imagine how jealous his brothers will be. :-) I was very proud of Benji, because when Andrew came to the room, Benji was able to put his feelings aside and was kind and friendly to him. Of course, Andrew made it easier because of his ability to relate so easily with Benji. I was quite impressed with the guy; very nice and down-to-earth!

After that, Benji’s spirits did seem to improve and by evening, he seemed to be back to normal. I know however, that the discouragement and disappointment is still very much there. Since his numbers have dropped, we’ve needed to look at the possibility of transplant in the near future, if we can’t get them back up. That is also weighing quite heavily on him as he tries to cope with the idea, and what it could mean. This summer was the first we’ve really discussed prognosis for Cystics with Benji and since he doesn’t express his feelings much, I can only imagine what he might be struggling with. We have added the Psych department to his care this time, and it seems she may be able to help him work through some of his feelings.

Yesterday, after the doctors from Riley and the transplant doctor from St. Louis conferred regarding his care, we came up with a new plan. One of the things the St. Louis doctor said was that we shouldn’t be too anxious and concerned if his numbers don’t come up as quickly as they have in the past. For various reasons, he expects this visit to take longer than the ones this summer, which were around one month each. Currently, the plan is to continue with the regimen of meds he’s on now- with the addition of another one- for the next couple weeks. Additionally, they took a nasal swab to test for a virus (i.e. RSV). If those results come back positive, that would answer some questions as to why the meds don’t seem to be helping. If, at the end of this round of IV’s he’s not any better, the possibility of desensitizing Benji to Bactrim will be considered..

Desensitization is a process of giving someone a small portion of something that person is allergic to, and increasing it gradually until that person is able to use the medication. Benji is allergic to Bactrim and unfortunately, Bactrim is the best medication to treat one of the bacteria he has in his lungs. Numerous times over the years, the idea of desensitizing him to it has been discussed, but we’ve never needed to actually go ahead with it. There was one time they attempted to desensitize him in the room but even with the smallest amount, he immediately broke out in hives. If we do it now, it would need to be done in intensive care, under constant observation. The last option is a hospital-to-hospital transfer- from here to St. Louis. This would only be done if he doesn’t improve after an extended period of time. This is something none of us wants to do and in order to not burden Benji further, I haven’t yet mentioned it to him.

As I insinuated earlier, I have done quite a bit of crying the last couple visits. I seem to be on the edge of tears all the time. Some of those times I’m alone, sometimes while talking with Benji about difficult things and some of the times we’re shedding tears together. Many times I wish Allen could be here with us. I’m excited that he’s coming down today- in order to be here for a board meeting this evening; he will then be staying for the weekend. Allen could use a lot of prayer during these times as well; he has a different kind of agony- being at home. Especially during some of these difficult times, he wishes he could be here with Benji and me. While going through the tough times with Benji is very difficult, especially when I’m alone, I’d still rather be here- with him- than at home wishing I were here. I know Allen often feels helpless at home, wishing he could do something to make things better.

Of course, the boys at home can always use your prayers as well. At this age, not having mom and brother at home is not as difficult as when they were younger, but I know they have their own struggles. I don’t think we’ll ever know exactly how all this has impacted their lives, either positively or negatively; our prayer is that the experiences they’ve had will help mold them into the men God wants them to be and that they will be able to minister to others as a result of their own experiences.

One of the discussions I had with Benji the other evening was how we handle trials. I recently read or heard somewhere, that when trials come, we have three choices in how we choose to handle it. 1. We can become bitter and angry with God and the circumstance. 2. We can resign ourselves to the situation. 3. We can choose to embrace the trial and see what we can learn and how we can grow because of it. I want to, and I hope we as a family will choose number three. Pray that Benji has the ability to do this as well and that he would experience a “peace that passes understanding!”

The next PFT’s are not until next week, so unless something major happens in between, I won’t update until then. Thanks for your continued prayers and support!!!

Update:
We just received news that Benji has a virus which is both good and bad news. Bad news is that it verifies he'll probably have a longer than normal stay, (could even be as long as 2 months!)- Good news is that we now have an explanation as to why the antibiotics don't seem to be doing any good. Despite the lengthy stay,this was encouraging news because it may mean transplant is not as imminent as we had feared.

Friday, September 21, 2012 12:18 AM CDT

Yes, Benji’s back at Riley; he was admitted Wednesday, after his checkup. It’s by far, the hardest admission we’ve ever had, for both of us. He, because he felt he absolutely could not be stuck in here again and me, because of the discouragement, anger and disappointment he was feeling. If only I could carry that for him!

When Benji was younger, being hospitalized was never a big thing for him, unless he was getting poked or had to miss something VERY major. (Which when he was younger, was mostly family get-to-gethers like Christmas, Easter and Troyer campouts.) As he’s gotten older and his schedule fuller, his stays have become more difficult because he’s had to miss out on more activities that were important to him. However, for the last 5 years, he’s only needed to be hospitalized approximately twice/year and he never had any strong feelings about being admitted. Until this time. I believe the fact that he had to spend most of his summer here is the main reason it was such a difficult thing for him to accept; which of course is understandable. Before coming down for his checkup, he had expressed to me that the simple idea of needing to stay again actually gave him a panicked feeling.

When the first PFT he tried was only a 23, he couldn’t hold back the tears and we spent some time crying and praying together before trying again. (In case you don’t know, our preference is that he could get back up to 43 percent, which he had late last year. However, the highest he’s had this year is a 38 and he left here in August with a 35 percent.) He tried two more times but the highest he could get was 26 percent. The next couple hours were very difficult as he tried to cope with the idea that he wasn’t going home and I experienced the excruciating pain of watching my child go through such a difficult time! (I know many of you know exactly what I’m talking about.) I tried to encourage him and console him and I told him it was ok to be angry- even with God- and that God could handle it if he expressed that to him. Then I prayed for peace and acceptance of God’s will.

God is so amazing and the grace and peace he extends to us if we choose to receive it, no matter how difficult the situation, is incredible!!! And Benji is an amazing kid! Despite how angry and discouraged he is, he is typically able to work through his pain and disappointment and in the end, chooses to accept the peace and grace God is offering! By evening, no one, including myself, would have ever known what we had been through earlier that day! He was cheerful and seemingly at peace. Thank you Jesus and thanks to all of you who were praying for him!

I already mentioned that his PFT’s were only 26 percent so of course, the goal is to bring that number up again. They did a slight change in the treatment plan and we’re hoping that makes a difference. His oxygen levels have dropped some since we’re in and he’s been on oxygen most of the time. He’s also struggling with a bit of the nausea that he gets the first week after starting him on one of the meds. At this point, our hope is that we won’t need to be here longer than the typical three weeks, but we never know.

My sister posted a link on my Facebook page yesterday to a song by the Christian group, Kutless. Such a beautiful, touching song and it expresses our feelings so well! I’d like to share it with you:

“Sometimes all we have to hold on to- is what we know is true of who you are. So when the heartache hits like a hurricane- that could never change who you are- and we trust in who you are. Even if the healing doesn't come, and life falls apart and dreams are still undone, you are God, you are good, forever Faithful One- even if the healing, even if the healing doesn't come.

Lord we know your ways are not our ways so we set our faith in who you are. Even though you reign high above us, you tenderly love us. We know your heart and we rest in who you are. You're still the Great and Mighty One; we trust you always. You're working all things for our good- we'll sing your praise.

You are God and we will bless you, as the Good and Faithful One. You are God and we will bless you, even if the healing doesn't come, even if the healing doesn't come.”
~Songwriters: Tony Wood and Scott Krippayne

Please continue to pray for good spirits, endurance and of course healing for Benji…

Thursday, August 2, 2012 7:49 PM CDT

Benji's going home! No matter what his PFT's are tomorrow, the doctors decided it's time he gets out of here and maybe that will help him more than anything. So, unless something major happens, we're going home tomorrow! Thank you all for your prayers and good wishes!

Wednesday, August 1, 2012 6:04 PM CDT

Yesterday was a discouraging day for Benji and another huge disappointment. His PFT was 35 percent, the same as it was last Friday. He was so hoping it would be at least 40 percent. Again, we're glad it's not going down, but neither is it where we'd like to see it. The plan has been to continue as we are as long as his numbers keep getting better, but since this last PFT didn't go up, we're not sure what to expect. After his next PFT on Friday, we'll have a better idea what the next move will be; and, while we still hold out hope that he can get back up to the 40's, the time may have come that we have to accept a lower baseline.

When Benji's in the hospital, he's often in his bed most of the day, which means he's not very active. The physical therapists do come into the room to work with him, but if it were up to him, he'd not get up at all. (Unless he has visitors- :)) It is possible that his health will improve faster by getting him home and out of this room, then to continue the IV and physical therapy he's getting here so, depending on Friday's results, we may get to come home this weekend. Over the years, Benji has seldom said much about wanting to get out of the hospital, but not so, this time; I don't think I've ever seen him so anxious to get home.

Please continue for Benji; he continues to amaze me with the positive attitude he carries most of the time. While he has his times of deep disappointment and discouraging news- after crying, talking and praying together, he always seems to have the strength to go on with a good attitude. I believe all the prayers being said for him are the reason he's been able to deal with things so well.

On a different note, last Friday evening Aaron, (Benji's oldest brother), came down to spend the night with him, while I went home again for the night. I know that meant a lot to Benji and I'm sure he enjoyed it a lot. On Saturday, Allen and I came back down and on Sunday, Ken and Kris Miller and their family stopped in, on their way home from Southern Indiana. Allen hitched a ride home with them. Last evening Dawn Sellers came by to spend the evening and play Phase 10 with us. Dawn is a friend of ours from down here who is also a cystic,.

Dawn is involved with the Cystic Fibrosis Foundation and she brought a plate I had painted in Benji's honor, to be sold at a fundraiser here in Indy. A couple weeks ago, there was a day when cystics and their families were invited to go a pottery store in town and paint something to sell at the auction. Benji couldn't go, so I went by myself. We were allowed to chose whatever piece of pottery we wanted and paint it however we wanted, so I texted him some pictures, from which he chose an idea of something he'd like me to make. Per Benji's suggestion, I chose an oval plate and painted a Colts football field on it; on the bottom I painted his name and date. It was fun to see the finished product after it had been glazed and baked and I'd really like to buy it back at the fundraiser this October. I'm posting a picture on Facebook and for those who don't have Facebook, I will try to get one posted to Caringbridge before too long.

I'm also posting a picture of the sign I made to put on our door. Monday they passed out craft supplies to make a door sign, which will be entered into a contest. The idea was to make something Olympic themed. Benji wanted nothing to do with it so I was told I could do it. I'm also posting a picture of that sign to Facebook and hope to get it posted on here too.

Thanks again for all the encouraging words and prayers!

Until next time...

Tuesday, July 24, 2012

It's obviously time to give an update...We are still at Riley; as of today, it's 3 weeks since we came in this last time. (We were here 3 1/2 weeks in June, then home for 1 1/2 weeks, now back for another 3- so far.) Benji's PFTs have been climbing- very s.l.o.w.l.y. He had a 25 percent when we came in and today he had a 34. Based on where we want to be (low to mid 40's), he's about half way there. We never know though- there are times when his PFTs will suddenly shoot up, so we still have hopes that might happen by the end of the week. As of now though, it looks like we could be here quite a bit longer.

Over the years, despite some deep disappointments, Benji has done amazingly well at enduring lengthy hospitalizations. I don't know if I've ever seen him so anxious to get out of here and go home as he is now! I had said when we first came in that we don't really have anything else happening the rest of the summer, so we didn't need to stress about getting home for anything. At the time, I didn't even think about the fair and, since it wasn't till the end of July, I didn't expect it to be an issue. Well, here we are, it's the end of July and Benji would love to be at home, going to the fair with his friends!

Tonight we had another one of those times when we cried together- he, because of another big disappointment; me, because it's so difficult to see one of my children in such pain! I had to think (and I told him) that how I feel is probably similar to how Jesus feels at these times. He probably also cries with us, as he sees us in such pain, but just as the doctors, Allen and I choose not to let Benji go home at this time because we believe it to be the best thing for his overall health, so also Jesus does to the same to a much greater extent. As much as it pains him when we have to go through things like this, he doesn't necessarily take those circumstances away because he sees the complete picture and knows what is best for us overall. I am so grateful I have the opportunity to be here in these special moments, when I am able to share Benji’s pain with him. By the end, of our conversation, Benji seemed to have again resigned himself to the probability that he'll be here a while longer.

Having said this, I still expect him to struggle with his deep disappointment the rest of the week, while he’s here and all his friends are at the fair. Please, continue to lift him to God in prayer- especially that God would protect him from discouragement and that he will be able to feel the loving arms of Jesus surrounding him.

Thanks so much to all of you who are interceding on his (and our) behalf. We can certainly feel those prayers!

PS: In Benji's last PFT, though his FEV1 was only up 1 percentage point, his lower airway numbers jumped 7 percent. (The FEV1 is an overall percentage and is the number typically used to determine total lung function. This is the number I use in my updates.)

Today, we were told his lower airways jumped 36 percent this time!! This is awesome! It may (emphasis on may) mean his FEV1 makes a sudden jump up.

Wednesday, July 11, 2012 11:05 AM CDT

I have some positive changes I’m happy to share with you this morning; we are so grateful for any good news! Benji’s PFTs on Monday were up 2 points from 25 to 27 percent and as I told Benji, at least we’re heading in the right direction. In addition, the last 2 days he’s been off oxygen most of the day though he has still needed it at night. Both of these are signs that he’s making some improvement.

The way it works here is that approximately five pulmonologists on staff take turns being on the floor. Although Dr. Howenstein, Benji’s primary doctor, is seldom the one on the floor, she’s always aware of Benji’s situation and involved in all decisions about his care. She typically will come by the room a couple times while we’re here (and more if he’s doing quite poorly), however, we seldom speak personally to her unless we choose to call her for some reason. Yesterday morning she stopped by the room. She said she had also been quite startled at Benji’s PFTs but that we just need to hang in there while we wait on test results and see whether the drugs are working. The plan now is to do the typical 3-week (approximate) stay with the same regimen of antibiotics as before, unless there doesn’t seem to be much movement in his health. If that happens, we’ll need to start all over with whatever new plan they decide to try. As of now, it looks like we’ll be spending most of our summer here. Of course, that’s not our preference but if this extreme heat continues, Benji wouldn’t be outside much anyway!

On Saturday evening, my sister Rose, her husband Jason and their four children came down and spent the evening with us. As some of you know, Benji loves garden tea and Rose had brought some along. I believe he had three glasses while they were here and she left the remaining tea (about a ½ gallon) for Benji. Benji’s not been drinking a lot lately and he needs extra fluids when he’s on all these medications. The tea was just the thing he needed – by early Sunday afternoon he had drank the entire ½ gallon!! :) Yesterday, my sister-in-law Wilma and her daughter Margaret came down to visit and brought 8 quarts of frozen garden tea concentrate, that Margaret had made especially for him. I know Benji appreciated the visit but he loves that tea! :D Thanks so much Wilma and Margaret for making that special effort!

It was nice to have Allen down here this weekend. He came down Saturday evening and was here till Monday, He comes down most weekends, or at least for Saturday night. The boys all had things going and weren’t able to make it. Not seeing Aaron, Tyler and Cory for so long is the thing that Benji and I miss the most while in the hospital (excluding this like camp and other extra special occasions.):) Of course, I don’t wish any of the other boys be in the hospital, but I wish I could have had the same, concentrated amount of time to spend with them, that I have had with Benji- even a small portion of that time. Cory, Benji’s best friend and brother, probably won’t be able to come down at all this time because he’s taking a Sunday school class in preparation for baptism. Benji is also supposed to be in that class but will probably need to miss most of it. Of course, our deepest desire has been that our boys choose to follow Jesus and we are so grateful that each of them has made the decision to do so!

That’s it for now; the next PFT’s are tomorrow.

Until next time….

Thursday Update: PFT's today were 30 percent so they're still moving the right direction. PTL! We're hoping to get him back to the low to mid 40's before going home. He's continued to be on room air (no oxygen) during the day this week as well. We are so
grateful!!!

Friday, July 6, 2012

Thursday update:

We’re back at Riley. Of course, we wish we wouldn’t have to be here but at least Benji got to go to camp! We got home on Saturday evening, June 23rd and Sunday evening he went to camp. He had a wonderful week but I think it wore him out; of course, the severe heat didn’t help. The reason he was re-admitted is because last Sunday his oxygen levels dropped and we needed to put him on oxygen. (He’s needed to be on ever since.) He also began running a temp on Monday and he slept a lot of the weekend, which didn’t surprise me after his week at camp. Neither are we surprised that he needed to come back nor are Allen and I that disappointed. We didn’t feel very good about where he was health wise when he was discharged, but were glad to go so he could go to camp. His last PFT’s were only 32 percent and we’d really like to see them get back up into the low to mid 40’s. His next PFT’s are this afternoon. Medical treatment is being handled as if it were a continuation of his last admission. At this point, we have no idea how long he’ll be here, but there’s nothing that he really wants to be home for till the end of August; so, we’re feeling pretty relaxed about the length of time.

Until next time….

Friday update:

We're quite discouraged with PFTs yesterday afternoon! Benji got a 25 percent which is the lowest he's had in many years. We have many questions and some fears as to what this means for the near future. Of course we know that the time will come that we'll have to take that next step (barring a huge miracle), but whenever that time comes, accepting it will be a struggle!

It's interesting to reflect back to 2007, when he was doing so poorly, because at that point we had accepted moving on to transplant. We are so grateful that his health stabilized and we've been able to go this long without needing to do a transplant. (In fact, according to current statistics, if he'd had the transplant at that time there's only a 50 percent chance he'd still be with us.) However, we've now adjusted to his improved health over the last 5 years and it feels kind
of like we're starting over. Please continue to pray for inproved health but also that God's will be done and that we will be able to have a peace about whatever that is.

Thursday, June 21, 2012 10:15 PM CDT

Benji finally had his port surgery this evening at 6:30. It took a little longer than expected but everything went well. Since there was a slight chance he might be able to have the surgery earlier today, he wasn’t allowed to eat or drink anything from midnight on. I felt so sorry for him while we were waiting; he was so hungry and was feeling weak and he kept having to wait… and there was nothing we could do about it! Finally at 6:30 they took him and by the time it was all said and done, we got back up to the room around 9:30. Coming out of the anesthesia was a bit difficult but he’s now sitting up in bed watching videos- though rather gingerly.

Before he’d gone down for surgery, he was trying to figure out what sounded good to eat and he settled on Chinese; so, while he was in surgery I got him some pork-fried rice and orange chicken. It’s been a couple hours since he started to wake up and he’s just now eaten a little of the rice. Somehow, eating just hasn’t sounded very appealing since the surgery. :) I’m sure he’ll want it tomorrow though.

The plan now, is to come home Saturday; I’m really glad we have the extra day here after surgery, just to make sure everything’s okay.

Again, thank you, thank you, thank you for all the support and prayers!! Especially to all of you from church, and others, who texted personal messages to Benji and let him know you cared and were praying for him! I don’t think even he knows what that does for him!!

Love you all and God willing, we will be home on Saturday; if we happen not to be able to, we’ll be sure to post it.

Tuesday, June 19, 2012 2:13 PM CDT

This morning the Dr. told us that he doesn't think keeping Benji on the additional antibiotics a lot longer is going to help bring up his PFTs; and since they think he's doing pretty well clinically, we can go ahead and schedule his port surgery.*Yay!* They're attempting to get that scheduled now and the goal is for him to come home by the end of the week! Thank you Jesus for sparing him one more big disappointment!!!!!

In addition, the infectious disease doctor was just in the room to see Benji and said he thinks it'd be okay for Benji to go off all antibiotics for the five days he's at camp. Benji could scarcely contain his beaming smile when he heard that. If you didn't know, Benji has been on an IV antibiotic since last September, and except for those five days at camp, he will probably be on it for at least a year.

(Point of information: we mostly work with the pulmonary department but because of the rare, deadly bacteria he has in his lungs, the infectious disease department has been a primary influence in all antibiotic decisions, from the beginning.)

Again, thank you for your prayers. We continue to hope and pray that we will in fact be home by the weekend!

Monday, June 18, 2012 10:22 AM CDT

Praising God for answered prayer though not in the way we expected!!! Last evening Allen called and said that when the Troyers were together last evening they had had a time of praying for Benji and that he believed that the x-ray today would not show a pneumo. I told him he had more faith than I! :( Well, we haven’t done the x-ray yet today but when the doctors did rounds this morning they told us the radiologists have changed their minds and now believe this is a cyst, not a pneumo!! THANK YOU JESUS!!!!! (And forgive my lack of faith!)

I was so excited, I forgot to ask what it means if he has a cyst (I’ll be finding that out) however, what this means is that Benji can now do his PFTs which are required in order for him to have the port surgery. We will be doing PFTs this afternoon and I am believing they will at least be in the high 30’s. :) This also means that as long as Benji’s PFTs are good and he seems better clinically he SHOULD be able to have his port put in this week!! YESSSSSS!!!! This also means he there is a good chance he can come home by the end of this week. (I really didn’t know how I was going to watch him go through such a HUGE disappointment again.)

When they told me they now believed it to be a cyst, the Dr. said he swears they looked at this together and they (the radiologists) were sure this was a pneumo. In fact, Benji has had a daily chest x-ray since last Tuesday, and on Friday, they did a CAT scan to verify that it was in fact a pneumo. This means FIVE times they thought it was a pneumo and suddenly, they believe it’s a cyst! What a faith builder for Benji but it’s also a wonderful testimony to the staff here! When the Dr. to told me about the cyst this morning, I just started to laugh and then told them about my conversation last evening with Allen and that though God didn’t answer it in the way we hoped, he had answered our prayers!

THANK YOU ALL SO MUCH FOR ALL YOUR PRAYERS AND ENCOURAGEMENT!!!!!!!

Monday evening update:
So… to give you a little more information about the “cyst”: The doctors were using “cyst” interchangeably with “bleb”. We are familiar with blebs since Benji has had them in the past. A bleb is an air pocket in the lung tissue (picture a bubble or blister); of course, the area(s) of the lungs that have a bleb(s) will be weak and more likely to burst, which results in a pneumo. (Again, to see a diagram and better description of blebs, see the photo page on the Caringbridge site.) While our preference obviously is not to have a bleb either, compared to a pneumo, we’re delighted with it. This means he can do PFTs and PFTs are vital to determine whether to go through with port surgery.

Speaking of PFTs, we were disappointed with PFTs today; he couldn’t have tried any harder but couldn’t get above a 33 percent. :( This by itself however, doesn’t mean he can’t be home in time for camp; it would of course have been more certain that he could go home if they had been in the high 30s/low 40s. The doctors are aware of our strong desire to get him home in time for camp and I know they will try their best to accomplish that. Barring something critical happening between now and then, I have very high hopes they will make it possible for him to be there. After speaking with the docs tomorrow, I may have a better idea on discharge date but don’t really expect to know for sure till the end of the week. Continue to pray that God would “grant the desires of Benji’s heart”!

Saturday, June 16, 2012 1:14 PM CDT

This morning it was verified to us that Benji does have a “loculated” pneumo. (By the way, for those of you who thought Benji has pneumonia, he doesn’t; he has a pneumothorax, or pneumo for short. A pneumo is “the collection of air in the space around the lungs. This buildup of air puts pressure on the lung, so it cannot expand as much as it normally does when you take a breath.” This can result in a collapsed lung. As I understand it, loculated simply means that there is scar tissue running through causing a cluster of small, connected air pockets. In July of 2007, Benji had a procedure done called pleurodesis. The purpose of the pleurodesis was to create scar tissue on the outside of his lungs in order to strengthen them. There is a good possibility that the pleurodesis has done what it was meant to do and caused this pneumo not to result in a collapsed lung. Again, if you want to know more about Benji’s former experience with pneumothoraces, see the journal entries for January and July of 2007; the photo page also has a diagram of what a pneumo looks like. (The diagram is approximately 2/3 of the way down the page.)

What does all this mean for Benji? Well, if this were a large pneumo or if it were to become a large pneumo, Benji would need to have chest tubes inserted surgically. These tubes allow the air pocket between the chest wall and the lungs to escape. These stay in until the pneumo heal. In the past, the healing process has been lengthy for Benji. (3 to 5 weeks.) The doctors are having a difficult time knowing how to handle it this time because the pneumo is so small and there is no way of knowing when in the last 8 months it originally occurred. The main difficulty is knowing whether or not to have him do PFT’s. Typically, PFT’s are not done when one has a pneumo because of the pressure it puts on the lungs, which could result in causing the pneumo to become larger; However, in order to do the port surgery, he needs to do PFT’s to determine whether his lungs are good enough to proceed. :/ The current plan is to wait over the weekend then do another chest x-ray before deciding how to proceed. Whether or not the port surgery ends up happening next week, he will not necessarily need to be hospitalized until the pneumo heals. Instead, if it hasn’t increased in size, he will be able to go home- we would just need to keep a close eye on it. Continue to pray for him, especially that he can be home in time to go to camp.

Benji had another nice surprise last evening. Loren and Joann Stutzman, our church Jr. Youth leaders, brought the Jr. Youth group down last evening. Benji had no idea they were coming and was delighted to see them! They didn’t get here till about 7:00 and left around 8:30, which means they didn’t get home till about midnight. Thank you Loren and Joann for blessing Benji in this way!

Thanks again for all the thoughts and prayers!

Wednesday, June 13, 2012 11:06 AM CDT

So...this is what's new. As stated before, there's a little confusion as to what his actual PFT results were on Monday; regardless what they were, the port surgery has been put off till at least next week. I should have clarified last time, but not having the surgery is not necessarily disappointing in itself- as long as he needs to be here, it doesn't really matter when we do it. (In fact, while he has the PIC line, he doesn't need to get stuck once/week like he does with the port.) The disappointment lies more in the fact that since he's not well enough for surgery, he's not well enough to go home. At this point it looks like we'll be here next week yet; our main concern is that he gets home in time to go to camp on the 24th. Please pray with us that he doesn't have to miss that; camp is one of his top three favorite activities during the year and something he would be devastated to have to miss!!!

In January and July of 2007 Benji had a couple massive pneumos, which were a huge part of the reason we thought transplant was imminent that fall. However, in July 2007, in one last attempt to put off transplant, he had a procedure called pleurodesis, after which he improved and hasn't had another pneumo nor had to do transplant since that time. In the procedure they cut out a greatly weakened portion of his lungs, and stapled them shut again. (For more details about this procedure- see the diagram and description on the photo page. If you don't know what a pneumo is, see definition above and if you want to read more about these experiences, see journal entries from January and July of 2007.)

Yesterday Benji had a chest x-ray, which didn't really concern us since it was pretty much a routine thing. However, this morning we were informed that the x-ray showed what was most likely a small pneumo on his lungs. There is a possibility that this could resolve on its own; if it doesn't it will again result in needing to put in chest tubes and the recovery time from that could be a few weeks. We just had a second x-ray done to see if anything had changed and are waiting for those results. Benji's face fell when I told him about the results and he (and of course we) are putting a lot of hope in it resolving on its own! Please pray for us regarding this; if Benji needs to have chest tubes put in, the likelihood of him being able to go to camp is almost nil.

Benji has a surprise coming this afternoon; I'll tell you about it later today but I'm sure that will help take his mind off things for a while and will brighten his day! :)

Thanks for all your encouraging notes, texts and prayers!!
I'll update as soon as we know more.

Wednesday evening:

Benji's surprise today was that two of his cousin's came down to spend a little time with him. He knew that Grandma, Grandma and Dale were coming down today but he didn't know that they were going to bring Landon and Jalen with them. Benji had quite a look of surprised delight when he saw them and enjoyed spending a few hours with them this afternoon.

Benji had a second surprise today. While Mom and Dad were still here, I got a call from Allen stating that our friend Norm Miller wanted to fly down here this evening and bring him and Tyler along. Soon after Mom and Dad left, I left to pick up Allen, Tyler, Norm and his wife Carol at a small local airport and brought them back to the hospital. Thanks so much Norm and Carol! That was so thoughtful and much appreciated!

Monday, June 11, 2012 9:52 PM CDT

Good Evening,

Well, the surgery has been cancelled once again and will not be until at least next week. :( His PFT’s today were 36 percent, which was better than last time, but not good enough to continue with surgery. The plan at this time is to start him on steroids and see if that helps, while at the same time continuing the other meds he’s been on. Fortunately, the nausea is improving every day and he didn’t need to throw up once today, because of nausea! Praise God for that!!

We just continue to patiently wait but hope to be able to come home next week.

Until later…..

***FURTHER UPDATE on Tuesday
For some reason, there's been some confusion about what Benji's PFT's were yesterday. We have always come back from the test, knowing what the results are (because we see them on the screen for ourselves) but this morning, the results the Drs. came with showed only a 33 percent PFT. We'll need to see what the results are on Thursday or Friday when he does his next one.

Wednesday, June 6, 2012 1:24 PM CDT

So this week has been pretty quiet. Once again, one of the antibiotics he's on is making him nauseous. This typically lasts around a week so we're hoping it doesn't last much longer!

He had his first PFT on Friday, which was 35 percent. While we'd like to see his numbers in the low to mid 40s, that is not as low as it has at times been upon admission. Unfortunately, his PFTs yesterday were only 32 percent. There is a chance that the nausea and tiredness he's been experiencing contributed to that, so maybe once the nausea is gone those will come back up. The surgery to change his port has been tentatively changed to next Tuesday, due to his low PFTs. (if you're not familiar with what PFTs are, you can see the definition on the home page.)

That's it for now so we'll catch you next time. Thanks for all your well-wishes and prayers!!

Saturday, June 2, 2012 3:22 PM EST

Benji was admitted to Riley this past Wednesday for what we call a tune-up. For those of you who do not know what that means, it is a non-emergency visit where Benji receives multiple IV antibiotics/meds as well as more intensive lung therapy than he gets at home. These visits typically last 2 1/2 to 3 weeks but at times have gone longer for various reasons.

These last few days have been a bit stressful, though not as bad as we've had in the past. In 2004 Benji received a Port-a-Cath (a small medical device placed under his skin, in his chest, that connects directly to the main artery. IV meds can be administered and blood can be drawn directly through this device. If you want more detailed information, you can go to this link: http://www.smiths-medical.com/Upload/products/product_relateddocs/access/Port-Systems/192009_SP Patient Info809.pdf).

7 1/2 years is a long time for a port to last and his has finally given out. The original plan was to come down for a check-up on Wednesday, stay for the night and have the port changed on Thursday. Instead of the check-up, he was directly admitted for the tune-up and when the Dr. checked him, she felt his lungs weren't in good enough shape to handle the anesthesia needed for the surgery. We hoped the port would work until at least next week, when we could possibly do the surgery. Well, it didn't make it. It has been quite sluggish the last while and has gotten progressively worse; it drew it's last breaths on Thursday night and by Friday morning no longer worked at all.

Thursday evening was difficult for Benji. The thought of needing to put in a PIC line was not a happy thought for him. (A PIC line is a device that acts similarly to a port but only lasts approximately 6 weeks. It looks a bit like an IV needle- and is put in the arm- but like the port, it connects directly to the main artery) Benji has had PICs before the port was inserted, but he doesn't remember having had them. While he has experienced many new things relating to his disease, he is still at times apprehensive about those new things, especially when they have anything to do with needles.

He was quite anxious and agitated on Thursday evening when we were trying our best to keep the port working. It's so hard to see him have to go through these times and it's a real struggle to know how to relate. I feel so helpless. I sit with him and I cry with him. I try to get him to express his feelings. I try to calm him down. I explain things to him to the best of my ability. I wonder why he needs to go through this and wish I could do it for him. At times I need to be firm. Often I pray with him.

Some of you have heard me mention before that it's often difficult for me to know how to pray for him. I so don't want to do anything to weaken his faith in God and I'm concerned if I pray for something specific and it doesn't happen, that it will cause him to doubt. In my head, I KNOW that God is in control and has only the best in mind for all of us. I know he weeps with us when we weep and hears our cries to him. I also know that he sees the full picture that we can't see; like looking at the route on a map instead of driving the route and seeing only what's in front of us, and he knows the purpose for all this. It is this faith in him that keeps us going but at times, my heart is a little slower getting there. :) Thursday night was one of those times.

I prayed with Benji and asked that God would cause that port to work until the surgery, but that we wanted His will done in all this and to give Benji the grace and strength needed to make it through if needed. Silently I plead with God to please, please let this port last till the surgery and spare him one more painful time. I told him how much it would build Benji's faith to see Him work in that way. I struggled with a bit of anger myself at the "unfairness" of it all. I also asked others to pray. (a special thank you to those of you who prayed specifically for this).

Obviously, this wasn't in God's plan and these are the times where faith has to come in- believing this is what's best even when we can't understand the reason(s) for it. I asked Benji about all this the next morning, after the port had given out completely. I told him I sometimes struggle with these things and asked him if he did also. He doesn't typically express feelings well and didn't this time either. However, he did indicate to me that he knew with his heart and not just his head that God really does care about him and hears our prayers, even when he doesn't answer them the way we wish he would. Please pray for him, especially in these fragile teen years, that his heart would remain soft toward God and that he would not lose his faith.

On Friday afternoon, Benji had the PIC line put in; we were glad that they did it after putting him to sleep (as opposed to numbing the arm and doing it while he was awake) but they did have to insert an IV in his arm in order to administer the drugs to put him to sleep. You might think that Benji is so used to needles that they don't bother him anymore, but while he has become accustomed to having a needle put in his port, an IV in his arm is something he has no recollection of ever having had. He wasn't at all excited about the idea of having a needle stuck in his arm and this, along with the whole idea of the PIC procedure caused him quite a bit of anxiety. The surgeon was wonderful! He had such a calming spirit about him and kindly and gently talked to Benji about the procedure and his fears and when they wheeled him back, it was obvious Benji was feeling calmer.

Everything went pretty well during the procedure (which took only 2 minutes) and we had to laugh at him as he was waking from the drugs. I told him he'd become a motor-mouth and probably wouldn't remember some of the things he was saying later on. When I asked him later if he remembered all the things he'd said, he said he just remembered talking a lot. :)

This whole thing, some stresses at home, as well as some policies that have changed here over the last year, (under new management) that make the hospital atmosphere seem a little less family-friendly made the first few days here a little difficult and resulted in me being emotionally on edge. (I seemed to cry at the drop of a hat) Last evening though, and today things have greatly settled down and we both are feeling much better! The PIC line that was put in, should easily last us till he gets the new port and he shouldn't have to get poked again. Hopefully the next 2 1/2 weeks or so will be a bit calmer and his lungs will get well enough to come back home soon.

Thanks for checking in and for your prayers....

Cindy

Tuesday, November 1, 2011 12:19 AM CDT

So sorry I have not updated this sooner! Benji came home on Friday, October 7 and his last PFT was 42 percent. Praise God!! An hour after we arrived home, we received word that one of our employees, Dennis Mast, was killed in a freak accident on the job. (He had worked for us for nearly 7 years and was one of only 8 employees, including the owners. Because we're such a small company, the employees are quite close and this was quite a tragedy.) He was a 35-year-old Amish man, with a wife and 4 children. Allen was the one who went to tell his wife about the accident and I arrived soon after, in time to be there when the children were told. This is something we hope we never have to do again! To see and hear their heart-rending cries was so painful!

On Sunday, I and my friend Marilyn Knepp took off for Benji's Monday appointment in St. Louis. Allen stayed home to be with Dennis's family. The checkup in St. Louis was fairly routine but we met a new doctor, the infectious disease doctor. What we did find out is that they are concerned that Benji's Atypical Mycobacterium in his lungs is rearing its head again and Benji may need to be on the antibiotic cocktail that he’s currently on, for up to a year; this includes an IV. At this time, Benji seems to be holding his own and he’s back in school. We have another checkup at Riley next Wednesday.

Right now I want to ask for prayer for a good friend of mine, Joyce Hershberger. Her husband, Dennis died during the night from a rare blood disease; he’s just my age. They have 2 children & 1 son-in-law; they will need lots of prayer as they travel this painful path. Dennis has a Caringbridge site if you care to visit or leave a message; the website name is “48dennis” and the link is- http://www.caringbridge.org/visit/48dennis.

Also, please keep the Dennis Mast family in your prayers; his wife’s name is Cathy.

Until next time…

Tuesday, October 4, 2011 12:22 AM CDT

More good news. Benji's PFT's yesterday were up to 39 percent! The plan at this point is to go home on Friday. There are still a few concerns; After several day of no temps, we were alarmed when Benji again spiked fevers on Thursday and Saturday night and has run a couple low-grade temps since then. There doesn't seem to be a specific thing causing them, but they mostly occur at night. The continued sporadic temps are especially concerning to us because they don't have any answers at this point.

Last Friday and Saturday were Benji's worst days of nausea; he laid still in bed all day and slept a lot. Saturday was a much better day and he has had almost no nuasea since then. What he has had has been pretty mild. We are sooo thankful to be past the nausea stage. Evidently his body adjusts to the medication after a period of time, since my recollection is that it also took about a week for the nausea to go away when he was previously on these meds.

We do PFT's again on Thursday and we're praying for the mid forties. :) Looking forward to going home!

Thanks for checking in.
Until next time....

Thursday, September 29, 2011 10:02 AM CDT

We have good news; Benji's PFT's yesterday were back up to 37 percent (where they had been 2 weeks ago.) He's also not running near as many temps; even the low-grade ones. The bad news is that the medication he's on makes him feel lousy. I think we've pretty much got the vomitting under control but he still has, as he describes it, a "yucky feeling" most of the time. Feeling like that makes it difficult for him to want to do much of anything except lie still in bed but at least he's getting the meds he needs. Continue to pray that he could have relief from that yucky feeling.

After yesterday's PFT's, I had a slight hope we might be able to go home by the weekend; however, because they had taken him off this antibiotic a couple weeks ago, the 2 week dose had to start over when they re-started the med. That means as of tomorrow, he'll only have been on it for a week. The 2 weeks will end next Friday and I don't have a whole lot of hope that we'll be home before then. Benji's check-up in St. Louis is currently scheduled for October 10th.

Thanks for all of your interest and continued support and prayers.

Friday, September 23, 2011 5:55 PM CDT

Addition to Friday's update:
After a couple days of no fevers, Benji had a rough night last night (Sunday) and his temp spiked again. They've been keeping it down with Tylenol since then, but even with that, he's still running low-grade fevers. His oxygen levels dropped today as well and he had to be put back on oxygen. There's obviously something going on since he's already on 3 IV antibiotics and 1 oral antibiotic, and none of them are taking care of whatever is causing the fevers! The Drs. are rather stumped right now, while they do more testing. It's slightly reminiscent of the time he got so sick in 2004, however his fevers spiked much higher then and he was much sicker in general.

One praise: he's not been nauseous at all since restarting that antibiotic, and the increased amount of nausea medication seems to be helping so far.
Please keeps him and the Drs. in your prayers.

Well, Benji's not at home. Much of this week he's been running low-grade temps & since his 38 percent PFT last week the PFTs have been going steadily downhill. :( Today's PFT was only 33 percent. The plan is to put him back on the med he had been on- the one that made him nauseous; however, they hadn't used near as much nausea medication as they could have, so hopefully with an increased dose we can get on top of it. We pushed our St. Louis appointment back a couple weeks.

I'm currently at home- well almost. I'm sitting, waiting for the Shonda Pierce & Dave Pendleton show in Shipshewana. Our family (the Troyers) met Dave & his wife Lynda on our Caribbean cruise & got to spend some time & lots of good laughs with them. Several weeks ago the family decided to get tickets to come hear him, so I drove home this afternoon & will be going back down tomorrow.

I will update more when I have more information.
Until next time...

Thursday, September 22, 2011 12:04 PM EST

Today it's been 2 weeks since Benji was admitted. The goal is for him to go home on Friday, but because of some low-grade temps he's had the last few nights and lower PFT scores yesterday, it's not looking quite as feasible as it did earlier this week.

Benji's PFT's were down to 35 percent yesterday (from 38 last week). :( He's scheduled to do them again Friday morning, and we'll see how those go. Since being taken off that other antibiotic, the nausea had pretty much disappeared but the last 3 days he's had more nausea and unsettled stomach again. Monday evening he also spiked a low-grade temp which went away by morning, then last evening he spiked 102 temp and tonight a low-grade one again. They're doing more testing to see if there's something else going on or if this is just a virus or side effect of a drug. He has an annual appointment scheduled in St. Louis on Monday that we were hoping to make, but I guess we can change that if we need to. We'll let you know what happens.

We had a quick but good trip to Virginia for the wedding, (which was beautiful) but it was difficult leaving Benji here. Allen's brother Sylvan and his wife Connie came down and stayed with him Saturday afternoon and evening and part of Sunday. It felt good to know he wasn't alone all that time!

I'll update you as soon as we have any more news.
Until next time....

Thursday, September 15, 2011 10:56 AM CDT

Update on Benji:

Last Friday, the Drs. decided to put Benji on a different IV antibiotic; he's been on this before but it usually makes him nauseous. This time, even with an anti-nausea medication, he couldn't seem to get rid of the nausea and felt pretty crumby for a few days. Because of this, we didn't do a PFT on Tuesday and that afternoon, the Drs. decided to take him off that med and put him back on the original one. Yesterday he felt much better and was able to do his PFT's. We were glad to see they were up- from 33 percent to 38 percent. While it's a good thing his numbers are going up, evidently God has a purpose for him staying here; it doesn't look like he'll be going along to the wedding. :(

As I mentioned in my earlier update, my nephew Mike is getting married in Virginia this weekend. Allen and Cory will be coming down tonight and we'll leave from here early tomorrow morning to head for Virginia. Benji will be staying here, by himself (per his choice). He's nearly 14 now, and the place and people are so familiar to him, that he feels perfectly fine being here alone. I'm also quite comfortable with that; the only hesitation I have is if for some reason an emergency would come up- we'd be 9 hours away! I'm sure he'd enjoy going but seems ok with not being able to go and of course, I promised him we'd bring him some food.

I'm also happy to report he's been off oxygen most of the time for the last few days and his lungs are sounding better. Just a waiting game. Thanks for your prayers and notes!

Until next time...

Thursday, September 8, 2011 3:02 PM CDT

Friday PFT's: only 33 percent. :( His baseline is 40 to 45 percent. We don't expect him to be able to be released in time to go to his cousin's wedding next weekend. I asked him today how he feels about missing that. He kind of shrugged then said what he'd really miss is the food. Haha! I told him we could bring him some.

Hi all. Benji's back at Riley as some of you know and I thought it would be good to give you an update. A little over 2 weeks ago, after a discouraging PFT result, Benji was put on a new IV antibiotic that he will need to be on a minimum of 3 to 4 months and maybe longer. Since that time, he's been experiencing a number of symptoms that could be attributed to an exacerbation in his CF but could also be a result of the antibiotic doing its job. He's had fatigue and loss of energy; diarrhea; bouts of decreased oxygen- (which could be a result of the mucus loosening and blocking his airways); lots of coughing and spitting up mucus- (which could also be because of loosening mucus); some nausea and just a general feeling of unsettledness in his stomach- (could also be from swallowing more mucus). These symptoms have caused him to miss a few days of school.

On Tuesday he had an especially concerning bout of oxygen levels dropping which prompted the Dr. to request he be admitted. By the time we actually left home, his levels were back to normal but the Dr. wants him to do a tune-up and they want to find out what is causing his symptoms. Benji is currently on a quarter liter of oxygen, which is a very minimal amount and nothing about which to be concerned. Other than that, he’s also feeling pretty normal, except for some increased fatigue. Tomorrow we do the first PFT and I’m anxious to see what those look like. Thanks for checking in and I’ll keep you updated if anything new/major arises. (No news means things are probably stable.)

Until next time…

Monday, May 16, 2011 8:09 PM CDT

What a day we have had!!! Last week Benji could not get his PFT higher than 36,this morning he had a 43!! He told Cindy after the test was over that he thinks he could have gotten an even higher number if only he could have stopped smiling! We feel very blessed and thank God for our little miracle today. Thanks for all your thoughts and prayers. The plan is for him to come home tomorrow.
Until next time....... Allen

Friday, May 13, 2011 2:07 PM CDT

I will break in and give a quick update on Benji. I went down last night and came home this morning again. Benji is doing ok but not much has changed to this point. His PFT remains at 36 as of yesterday. (Thursday) Dr. thinks maybe his glucose levels are contributing to his PFT not going higher. They are planning to start him on insulin for now and see if that makes a difference. It is not unusual for Cystics to also develop diabetes. Prayer requests: Pray that Benji is not diabetic and also pray for Cindy as she is preparing for a graduation and not being able to be here to do that. She has been working on pictures for the open house but will need to be home soon to start getting things around at home. Of course pray for the rest of the boys as they are separated from Benji again.

Friday, May 6, 2011 7:30 PM CDT

Hello everyone,
We are back at Riley Hospital again. Benji has been feeling ok but his PFT (Pulmonary Function Test) has been in the low 30's. His normal had been low 40's. We hope to get that number up again. Cindy went home today to be home to take pictures for Clinton Christian School banquet tonight. I came down to be with Benji. I met her in Kokomo for lunch then we went our separate ways again. Pray for the family, Benji and the doctors as they try to decide how to treat Benji. Thanks to Grace and Sherrie for bringing meals in this week for me and the boys.
Until next time....
Allen

Friday, May 6, 2011 7:30 PM CDT

Monday, January 17, 2011 10:48 AM CST

So, we’re back at Riley. Last week was a busy and emotionally draining week but we were so thankful we could all be there for the viewings and funeral. Allen’s dad was a good man and a Godly man, and he will be missed by many! His funeral was a perfect reflection of who he was. Two things stand out to me about him: 1) No matter whom someone was, or whether they were Amish or not, he was always so accepting of them and 2) He had a heart for the Lord and was so concerned that his children and grandchildren all come to know Jesus as their Savior. This was reflected in his funeral by him asking for the main sermon to be done in English and the content of the sermon was such a clear message of salvation and about what it takes to be a Christian. To me, his request to go against tradition and have the main sermon preached in English was the symbol of his accepting attitude toward others, and the content of the message reflected his heart for the Lord. I would never have expected to come away from an Amish funeral feeling so blessed, but it was a truly wonderful service!

On to Benji…so when we left here, the plan was for him to be released on IV’s until Sunday, and then come back down on Sunday to finish out his treatment. I’m sure Dr. Montgomery planned on him to be here through the week or he wouldn’t have had us come back. However, the Dr. Montgomery’s staff rotation was over on Friday, so we now have a different staff Dr. and when they did rounds this morning, we were told if his PFT’s are good enough today, we might be able to go home TODAY! While that would be great, I’m really wondering why I “moved” (literally) into the hospital again FOR ONE DAY! :)

Well, we were delighted with his PFT’s; he got a 41 percent, up from 36 last week. After that, we thought we might be able to go home yet today, but now they’re saying they want to do some lab work in the morning yet; so, it will be at least tomorrow before we get to go home. I had gotten my hopes up that we might be able to be back in time for Cory’s game against Fairfield tonight, but I guess we won’t make that. We were glad however, that Benji could be home for his game on Saturday and hope he can be home in time for his game tomorrow night.

Thanks to all of you for your prayers during the last couple weeks, especially last week. We really do feel those prayers!

Until next time…

Wednesday, January 12, 2011 5:53 PM CST

We're home. The Dr. released Benji to come home this morning and expedited the discharge. We were able to be here for most of the viewing this afternoon and evening. He will continue his IV's at home & then we'll go back down on Sunday to finish out his treatment. We're so grateful to be able to be here during this time; we would have felt so torn between places if he couldn't have come home. It relieves a LOT of stress!

Thanks to all of you who have been praying for us. God's grace is truly sufficient!

Until next time...

Wednesday, January 12, 2011 5:53 PM CST

Tuesday, January 11, 2011 11:09 PM CST

Time to update:

Benji is definitely doing better; he's not running temps and is off oxygen- yay! His PFT's Friday were up from 32 to 35 percent and today he had a 37 percent. At least we're headed in the right direction. I have seen a faster improvement in him this visit than I typically see and that's encouraging.

Allen's father passed away this evening and so I'm going to be speaking with the Dr. in the morning to see what we can work out for going home. They had previously assured me that he would be able to go home for the funeral, but if possible, we'd like to take him home on IV's so we don't have to be running back and forth. I really wished we could have been home with Allen and the other boys tonight and the last couple days. Please continue to remember the Eash family in your prayers. This is going to be especially difficult for Allen's mother.

I'll let you know what happens with Benji and in regards to going home.
Until next time...

Thursday, January 6, 2011 1:16 PM CST

Hi all,

Benji's back at Riley. We were fortunate to keep him home over the holidays, although he missed the last 3 days of school before Christmas break. He was running temps and his cough was worse. The Dr. put him on an additional oral antibiotic to see if that would take care of it, which lasted till last Thursday. Well it didn't, so we brought him back down last Saturday.

This is what we would consider a "routine" visit. (Meaning that unless something unusual happens, we will be here for 2 to 3 weeks for IV antibiotics and more intense treatments.) His first PFT's were 32 percent; his baseline at this time is 40 to 42 percent, so we'll work at getting him back up to at least there in the next few weeks.

At this moment, we're more concerned about the health of Allen's dad. He's 87 and is in intensive care with congestive heart failure. Please pray for him and the family.

I'll keep you updated if anything new happens; if nothing else, at least for PFT results.

Until next time...

Saturday, November 13, 2010 12:48 AM CST

Hi everyone, Just a quick note to update you on Benji. He has been doing quite well since May and has been going to school all day, every day this year. This is the first time since second grade he's been able to do that. We are very grateful! Thanks for checking on him and please continue to pray for him.

Thursday, May 27, 2010 9:28 AM CDT

We're so happy to let you know that Benji had a PFT of 42 percent at his check up yesterday! I really wasn't sure what to expect but was thrilled to see the results! (Benji and I were high-fivin' each other when we saw those numbers.:)) He will be finished with his IV antibiotics today but will remain on additional oral antibiotics for the next couple months.

Benji has been back at school since he's home, but is frequently needing oxygen; we're hoping he can be off of that before real long. It makes it difficult for him to run and play when he's got to carry a little oxygen tank around.

We're planning to have a check up in St. Louis within the next month. This is where we go to see the Drs. regarding his lung transplant and even though Benji is currently deactivated, we typically see them once or twice a year. Being deactivated on the transplant list means we won't have to go through the long, tedious process of getting listed at the time they feel he's close enough to needing one; at that point, he will simply be reactivated and continue where he left off. (Transplant is only done as a last resort so we're hoping to put this off as long as possible.)

We were hoping to be able to take a family vacation the week after school is out, (the only time it’s even possible this summer.) Allen and I had to cancel out flight to Florida last February (because of Benji being in the hospital), so we decided to go now and take the family. Well, it doesn’t seem to be working out quite like that. Our kids are getting older and Aaron now has a job and isn’t able to take off work and, Benji will be staying with his uncle and aunt because he doesn’t want to go along; he says he can’t breathe well when he’s down there. We wish it wasn’t this way, especially now that we have a place down there, but I can understand why he feels that way. So, I guess it’ll end up being just Cory and Tyler that go with us but we’re looking forward to spending time with just them as well. I think Allen and the boys plan to do quite a bit of golfing, (if it’s not too hot), and I plan to spend a lot of time at the beach. :)

We’ll update again after the St. Louis check up or if anything else unusual happens in the meantime. We are so grateful for God’s mercy and grace and continue to ask for your prayers regarding his healing.

Until next time…

Wednesday, May 19, 2010 9:57 AM CDT

[***Update from Thursday, May 20 at bottom***]

Around 10:30 on Monday, Benji did a procedure where they placed a probe into his esophagus in order to determine if he has reflux. He came out of that fine and by mid afternoon was back to his normal self. Just before they took him into surgery, I asked him if he was at all afraid, to which he replied that he wasn't. He has done this enough times that it's no longer a big deal to him but I was reflecting yesterday on the first time he had any type of surgery here. He was 6 years old and below is an excerpt of my journal entry for that day.

~~~"This morning was a rough one. Around 11:30 this morning, Benji had a surgical procedure done and had a port put in. He wasn’t at all thrilled with the idea and even though I tried to help him understand that he wouldn’t feel when they did it, and that he wouldn’t need to get poked anymore after it was done, he still didn’t want it.

As I pushed him into the room where the procedure was to take place, I saw a cold, sterile room with a table in the middle and a huge light over the table. It was enough to scare an adult, let alone a child. Benji began to cry and say he didn’t want to have this done. I asked them if I could hold him, they said I could and since there was no chair in the small room, I picked him up, sat in his wheel chair and held him there. No matter what I said, he couldn’t be comforted. He said he was scared but couldn’t say why, I can’t imagine what all might have been going on in that little mind.

I just couldn’t imagine having to put this little scared guy, on that table and leaving him there! I quietly asked the doctor if I could hold him while they put him to sleep. To my amazement and tremendous relief, he said I could! What an incredibly considerate thing for them to do and what a gift to both myself and Benji!! I was able to hold him, soothe him and stroke his head until he suddenly dropped off to sleep. Then it was mom’s time to cry."~~~

Back to current events; Benji did well that first day, but the second day wasn't quite so easy. He struggled with a lot of pain in his chest, (because of the surgery), and he would cry out each time he had to cough. That was so hard to see, especially since there wasn't much that could be done about it. Fortunately, by this morning, the pain had improved but he's still sore. He's had to be on more oxygen since the surgery and because that hasn't come back down to his baseline yet and because of his chest pain, they ordered a chest x-ray this morning.

This afternoon, the Drs. should be getting the results from his reflux tests and at that point, they'll have a better idea about when Benji can come home. There is a very slight possibility that he may be released tomorrow but he would be coming home on oxygen and IV's. He still won't be able to be in the spring program but that would at least get him home in time for the 100-verse club field trip on Friday. The Dr. said though, that if his oxygen levels haven't increased, he would most likely not be released yet. I told them that even if he can't be released tomorrow, we'd really like it if he could at least be home for the last few day of school. I'm sure they'll really try to make that happen, if they at all can.

I didn’t mention in my last update that we were glad to have the rest of the family here on Saturday and Sunday. Allen, Cory and Tyler came down Saturday evening and stayed for the night. Aaron and Nicole came on Sunday and Benji and I really enjoyed being able to see them all. The nurse observed the other evening how Benji’s personality seems to change when his brothers or friends come. I’ve noticed this as well; he gets much more hyper and talkative. He also wants to be out of bed more, whereas that typically seems to be quite a chore for him. 

Yesterday my parents, (Harley and Betty Troyer), and Uncle Dale drove down to visit for a while. It was good to see them and we all had fun bowling in the room, (one of the benefits of having a Wii in here), and guess who won…Dale did!

I don’t have anything else for now but I’ll update again when I get a better idea of a release date.

Until next time…

Update for Thursday, May 20:

We were told yesterday that Benji would probably get to come home today, as long as his PFT's weren't way down this morning. Well, they weren't, they were up to 37 percent, so we're home! I waited to update until now because I thought it'd be fun to surprise everyone and show up at the Spring Program this evening. We did make it home by 6:30, cleaned up a bit and went to the program. Obviously, Benji wasn't able to participate, but he enjoyed watching it.

I had asked to be able to bring Benji home, if at all possible, so he could go on the field trip tomorrow and be here for the last week of school, so we needed to come home on IV's and oxygen. I appreciate the Drs. letting us do that. We're hoping he can be weaned off the daytime oxygen soon. He came home on 4 antibiotics, 2 IV and 2 oral. Along with that, he's on an additional 6 medications. (Not counting his nebulized meds-[the meds he inhales]) I'm making a schedule tonight to help me remember when he takes what.

We have a check up next Thursday to see how he's doing and hopefully, he'll be much improved! I still haven't given up hope that he can get those PFT's back up to 45 to 47 percent! Keep praying.

It's great to be home and feels so good to be sitting in my own bed, writing this update! Hope it last for a little longer this time.

Until next time...

Sunday, May 16, 2010 5:45 PM CDT

Unfortunately, as seems to be common lately, we have not seen much of an improvement in Benji's lung function again this week. His PFT's on Monday and Thursday were 34 and 35 percent; while we were glad to see they had at least gone up, they were not what we had hoped for.

Tomorrow morning we are planning to do another PFT and if the Dr. feels he's improved enough, he will have a surgical procedure done to determine if he has reflux. We're told that if he does have reflux, this could be the cause of many of his problems lately. If the Dr. feels his lungs aren't well enough to go under anesthesia right now, we'll then need to talk about the next steps and as of now, that could be any number of things. (I have concerns about tomorrows PFT's because he's had to be on oxygen again for the last 2 1/2 days.)

We are so fortunate to be part of school that is so supportive of Benji during these times. There are two school events that were supposed to have happened last week, that were intentionally postponed until this week, just so Benji would have a better chance of being able to attend. One event is the spring program on Thursday night, in which Benji was supposed to have a part and the other event is the 100 verse club trip on Friday. Benji would love to be home for these and we'd appreciate your prayers in this regard; also that Benji wouldn't have to be here much longer. Of course, we always appreciate your prayers regarding his healing.

Thanks for checking and until next time...

Tuesday, May 11, 2010 0:51 AM CDT

Ok, so it's time to do an update...

As I stated in my last update, Benji was readmitted to Riley on Monday, May 3. Last week was pretty uneventful and routine except for the the disappointment of his PFT results. A few weeks ago, at clinic, Benji had gotten a 37 percent so we were disappointed with a 32 percent on Tuesday. Friday, we were hoping to pull that number up a bit but Benji was feeling a bit nauseous during that time and only got a 30 percent. :(

When we originally came in, the plan was to hopefully, do a procedure at the end of this week, to determine if Benji has reflux or not. However, along with the low PFT's, Benji's nausea has been increasing again, the longer we're here. We're all really struggling to figure out why this has been such a problem lately, but there's a good possibility that fixing the reflux, (if he has it), could take care of his gastric problems as well as positively affect his lung functions. Pray that it's all as simple as this and not something much more serious.

The Dr. put Benji on the "weakest" antibiotic cocktail possible, in order to hopefully avoid the stomach problems that she thought may have been caused by the stronger ones he's usually on. So, she's also confused as to why his nausea would be increasing.

Because Benji has not been responding rapidly to the IV's, the Dr. told me this morning that she's not setting any dates for anything right now, until we get his lungs in better shape. So, at this point, our expectation is to be her at least till the first of next week.

This afternoon, Benji had to be put on oxygen and was running a slight temp this evening. Again, we're not sure why, although I did think about it that we don't constantly check his sats, (oxygen levels), at home, so we don't really know how often he should be on it there. In the past few years though, he has seldom needed to be on it while at the hospital either, except for the beginning of our admissions. Anyway, it's not a positive sign.

I was able to go home on Friday, to be there for Tyler's Jr./Senior Banquet. (our school's equivalent of the prom). This is a once-in-a-lifetime thing and I wanted to be there for it and take pics, etc. Benji is definitely growing up! He was delighted to have the room to himself and he actually stayed overnight by himself for the first time ever. When I left, I wasn't sure if I'd drive back late that night or wait until the next morning but I was so tired that night and when I called Benji, he said he'd have no problem staying alone. So, I slept at home and came down the next morning and Benji was just fine when I got back. :) The hospital has become such a second home for us and we know so many of the people here that it's not a big deal, from Benji's point of view, to stay here alone. From my point of view, I have no problem with the idea as far as his safety, the staff and his comfort level are concerned; my only thing is, I would hate it if an emergency came up and neither Allen nor myself were here. That would be a very long 3 hour drive! [or maybe it would be a short one. :)]

Saturday evening, Allen and Cory came down and spent the night and part of mother's day with us. The other two boys had thought they might come down too on Sunday, but weren't able to make it. I'm glad it worked for Allen and Cory to come because Benji's weekends get pretty long if Cory or other kids can't come down.

That's all I have for now, I'll update when I have more information.

Until next time...

Monday, May 3, 2010 8:41 PM CDT

Benji's just been re-admitted to Riley; we've known about this for a couple weeks, since the time of his last check up. His last PFT's were back down to 37 percent and the Dr. wants to do some further testing but first wants his lungs as clear as possible.

So... we hope to not be here much more than 2 weeks this time but we never know. I'll keep you updated.

Until next time...

Tuesday, March 30, 2010 12:14 AM CDT

We're praising God that the improbable became possible and Benji got to come back home, (after his Riley checkup), for at least another 3 weeks.

Benji hasn't been back to his normal self over the last 2 weeks and based on what Allen and I were seeing, we went for the checkup fully prepared and expecting to stay. His PFT"s were back up to 40 percent, (37 when we left the hospital), but it's difficult to trust the numbers since his PFT's had been so up and down during this last hospitalization. However, the other testing he did turned out pretty good. The doctor decided to change some meds and send him home for another 3 weeks, then back to see how he's doing. The Dr. feels he'll be better off being home and getting some exercise than being stuck in his bed in his hospital room.

I have mixed feelings about this; while it was great to be able to come back home, Allen and I are still a bit unsettled about what may be going on. If he rebounds by next visit, we'll feel better however, if he doesn't, we'll want some more answers. Please continue to pray for him and us.

Until next time...

Saturday, March 13, 2010 6:03 PM CST

Got a huge surprise today, we’re coming home on Friday!!!! (Unless, between now and then he gets a lot worse.) This is great news and I am so excited to get Benji out of here and into that beautiful spring weather! This however, may only be temporary; the Dr. is calling it a “respite”. She has stopped all antibiotics (except the one he’s been on continuously for a couple years.), and is sending us home for 2 weeks without them; the idea is to get all the meds out of his system and get home where he’ll be active and get some fresh air. She’s concerned about him being cooped up in here too long. There’s a slight possibility that he may pull out of this on his own but, if PFT’s aren’t better in 2 weeks, he’ll need to be re-admitted again. He will also need to have some more invasive procedures done to help determine the problem.

The Dr. feels like it’s too difficult to weed through things right now; because of all the different meds he’s been on. Because of the reactions he’s having to some of the antibiotics plus his lung issues, it’s hard to know what is causing which problem.

PFT’s today were only 31 percent (which would be considered stable; last time was 32) but, taking into consideration the fact that he was slightly nauseous at the time and had to sit to do them, they may have, in actuality, been slightly higher.

I had stated in my last update that Benji had a really bad day yesterday, but after stopping one of his meds yesterday, he did have a block of time last evening when he was pretty much himself. We did discover though, that one of the other antibiotics must also cause nausea because he became nauseous later that night, after taking it. He has had some nausea today but nothing like yesterday. He’s currently sitting up playing games on the laptop.

Thanks again for all your prayers and demonstrations of caring; they have meant so much!! Please continue to pray for Benji, that he will get better on his own or that the doctors be able to figure out what is wrong.

Until next time…

Update:
Benji's PFT on Friday was up to 37 percent. Not up where we want it but it's headed the right direction!! We'll know more in a couple weeks. Of course, as you can tell by the picture above, we got to come home yesterday.

Be sure to check out the photo album; Benji had a wonderful welcome home and he has to know he was very missed and is very loved!!

Until next time...

Tuesday, March 9, 2010 1:58 PM CST

It’s been a difficult day. Each day, since Benji’s meds were switched on Friday, he has felt progressively worse. It seems the meds he’s taking are making him feel nauseous and just downright crappy! The thing they’ve given him to help the nausea makes him sleepy, so he either sleeps all the time or has to put up with the nausea. Yesterday he chose to put up with the nausea, but he was holding still and pretty lethargic the whole day. The nausea seemed to get worse through the night and he’s vomited several times today. It’s never fun to vomit but for a short time afterward, he feels better before the nausea comes back.

It’s so difficult to know how to proceed; he was supposed to do PFT’s today, and we were hoping it would give the doctors an idea if he’s improving at all, therefore being able to decide if they want to keep him on this regimen or switch to something else. However, it’s not worth trying to do PFT’s if he’s too tired or not feeling well, because it affects the outcome. So, what to do?

They have found that the “atypical mycobacterium”, that made him so sick in 2004, is showing up again in his sputum cultures. While the doctors assume that this bacterium is always present in his lungs, it’s evidently not been too active in the last couple years, since it hadn’t shown up in his cultures. It may be that this bacteria is raising it’s head again, which may mean he has to be put back on the “five-antibiotic cocktail” that he was on for an entire year in 2006 and 2007, or something similar to it. That cocktail included an IV, for which he carried a pump on his hip for a whole year. Pray that the doctors are able to figure out the cause so it can be treated appropriately.

Today was the first time, since we’ve been here, that I’ve heard Benji say he wants to go home, He’s typically quite upbeat and seems like his normal self; however, during one of his extra bad bouts today, he started to cry and said pitifully, “I just want to go home.” I’m a huge crybaby anyway and it’s really difficult for me to hold back tears at these times; today, as usual, the tears won.:) All you parents know how difficult it is to see your children suffer, so I know you can relate. (The thought just occurred to me that as much as we care about our children when they are hurting, how much more Jesus cares for us when we suffer!)

Just since I began writing this, Benji has perked up slightly and is sitting up in bed building a bird house. It’s the first he’s shown any interest in doing anything all day, including even watching cartoons! Love to see it!! The Dr. also decided to stop his one med that we think is making him sick; at least until tomorrow so we can do a PFT. I guess we’ll see if that med was the reason for the nausea.

Ervin and Naomi Raber, (Allen’s sister and husband), were down here for a doctor appt. and plan to be stopping by in a little bit, so I guess I’ll finish up for now. I’ll let you know the results of tomorrow’s PFT, if he’s able to do it.

Until next time…

Friday, March 5, 2010 6:15 PM CST

What a roller coaster ride!!! I feel kind of bad because I feel like my updates are taking you all on that ride, right along with us. :) This however, has been such an unusual hospitalization! Typically, we come in, they start him on his normal round of antibiotics and he gets better; sometimes slowly and sometimes more quickly, but his PFT's always trend up. Not this time.

We were so excited with Tuesday's PFT results but were once again disappointed with today's; back down from 41 percent to 32 percent. It's all really puzzling and the Drs. are trying hard to figure out what's going on. None of the typical tests show anything unusual so they're kinda shootin' in the dark and makes treating him partly just trial-and-error. If he hasn't improved in a week, they'll probably do a bronchoscopy. This is when, after putting him to sleep, they stick something down his throat and into his lungs to attempt to find out if there's some bacteria/infection down there that he's not showing on his sputum cultures. It's difficult to know which meds to use when you don't know exactly what you're fighting. Obviously, it seems to be something out of the ordinary since he's not responding to the normal meds.

If, by the end of next week he hasn't improved, he may need to go through a process of being desensitized to Bactrim. Bactrim is the medication that the bacterium he grows, is most responsive to, but he's allergic to it. By going through this desensitizing process, he's then able to use it again. This needs to be done every time they start a new dose and according to what I was reading, desensitization to this particular drug, could take up to 1 month! Whatever they decide to do, I wouldn't be surprised if we're here for at least another 2 to 3 weeks unless he takes a sudden and unexpected turn for the better.

Benji and I are both in good spirits even though it's not what we wanted to hear. It would sure be nice to know what's going on and of course, it's always nice to know what to expect!

I’m pretty excited to have a new library card right now. I went to the Indy library this afternoon and was granted a 6 month library card for Benji, even though we don’t live in this county. This isn’t always done, so I feel exceptionally fortunate! He’s wanted some books to read so I stocked up on a bunch and he’s already started devouring them. :)

He’s pretty excited about 2 cousins coming down tomorrow to spend part of the day with him and I’m going to have to try to get him to bed a little sooner than normal for his big day. The longer we’re here, the more our days and nights get mixed up; it felt like I got him to bed pretty early last night cause he was settled down by 11:00! Fortunately, they’re pretty good about letting us sleep later in the morning and they try to be as quiet as possible.

The rest of us also have a big day tomorrow with the state basketball tournament. Go Couriers… :D

Until next time...

Day's over and we won State again!!! Yippee!! So fun to be able to go watch Tyler play!

Wednesday, March 3, 2010 2:04 PM CST

We are so happy to tell you that Benji's PFT's were finally up yesterday! If you saw Saturday's update, you'll know that on Friday, it had dropped to 34 percent, the lowest he's had yet in the hospital. Yesterday he got a 41 percent!!! We were so excited and grateful that he's finally headed in the right direction and we began to think of the possibility of going home on Friday.

However, after talking with the doctors this morning, I know we won't be going home until next week at the earliest. He's only been on this new regimen of antibiotics for 6 days and they want him to continue this for at least 2 weeks. So… since the one IV he's on is a continuous drip, there's no possibility of taking him home on it. :(

This means Allen and will be postponing our trip to Florida. (Dog-gone-it! I should have bought that travel insurance!) When Benji was being hospitalized so frequently, we would never buy plane tickets without getting insurance; however, this time I thought I didn't need to since he’d just been hospitalized in November. I sure learned my lesson! I should say too though, that even if he had been discharged, I wouldn’t have felt good about immediately leaving the family again. Besides, maybe now I won’t have to take my winter coat along when we do go.(teehee)

Benji seemed to take the news in stride, but I know he's disappointed that he can't go to watch his brother play in the state basketball tournament. (Yes, they won Regional's last night and I even ran home to watch the game. I left around 3:30 yesterday afternoon and came right back down after the game last evening.) Allen called Benji while I was on the way home and when he asked him if he’s ok with me leaving, Benji said, “is that even a question?” lol. He really IS tired of his mom being in the room 24-7! :) So, I guess I’ll be going to State as well. Fortunately, State is only an hour away instead of 3!

Last night when I came back down, I brought 3 doz. of Rise-n-Roll's cinnamon-caramel doughnuts along for the nurses and staff here. I'd brought some on Sunday and they were such a hit, I brought a bunch more. I can't tell you how many time I have heard the phrase, "Those are the most incredible doughnuts I have ever had!! Where did you get them?" Those of you who have had them, know exactly what they're talking about, don't you.:D (Okay Rise-n-Roll, I deserve a commission for that!):)

Benji seems in good spirits. Typically, when Benji’s in the hospital, there aren’t so many important things that he has to miss out on, so it's not such a difficult thing. I think all the notes, texts and visitors he’s gotten this hospitalization have helped him better cope with all the disappointments. I also forgot to mention earlier, but thanks to Mrs. Chupp and fellow students for the DVD they made for him. His face lit up while he was watching it, especially the parts where they were talking directly to him. He was surprised about your braces Karmin. :)

On Sunday some of his aunts, uncles and cousins came to see him: Sylvan and Connie and Ervin and Naomi Raber and their sons, Nic and Nate. He had a lot of fun learning how to play euchre with his cousins and Cory. Yesterday, my parents and Dale stopped in to see him; they were on their way home from Florida, where they’d been for 2 months. (They may need to come North where it’s warm! :D)

Today he’s getting a visit from one of our state senators, Carlin Yoder… who, for those of you who don’t know, is also our school administrator as well. lol Congress is currently in session, so he’s down here right now. Our government class from school is coming down tomorrow to visit the State House and see exactly what goes on in Congress, and are coming to see Benji afterward.

Thanks to all of you for your prayers and other various ways of supporting him and us through this time. Just last evening, he received a box of goodies from staff and kids at school and I guess there’s more coming. This includes those of you at home who are helping the rest of the family, with meals for all of them and school lunches for the boys. Thank you Grace, (she has personally taken on making school lunches for the boys, the entire time we’re gone!!) It’s a relief to me to know that at least their meals are taken care of while I’m gone!

Until next time…

P.S. I’m really proud of Benji right now! I was just asking him if he’d like to have someone bring his cousin Jalen (or his cousin Landon or another friend) down to be with him on Saturday. His face immediately brightened and he said he’d really like that…and then went on to say, “Unless Jalen also wants to go to State.” He then added that if Jalen did want to go to State, that maybe someone else could come, who didn’t want to go to State. I was touched by his thoughtfulness and unselfish attitude and wanted to brag on him a bit. :)

P.S.S. The school is doing a read-a-thon this month, to raise money for the library and he needs to get sponsors. I hope this isn't cheating, but I told Benji I'd post it on here so he doesn't have to make a bunch of phone calls. I do need to warn you though, if you do sponsor him, you won't want to do it per book. He LOVES to read, so much so that I sometimes have a hard time keeping enough books on hand for him. Also, he's got all kinds of time while he's in the hospital. :)

Saturday, February 27, 2010 10:16 PM CST

I'm writing from home this evening; Allen and Cory are in Indy with Benji. I'll be heading back down tomorrow morning and they will be coming home. We'll get to see each other a little bit. Both Allen and I made it to Tyler's basketball Regional’s, (which we won! "Woo Hoo") and Allen and Cory took off for Indy immediately afterward. You don't need to worry about Benji; he was delighted to see me go.:) I guess as my brother-in-law said, it's no surprise that a 12 year old boy might get tired of having his mom in his bedroom every day and every night and every day and every night for weeks on end. I suppose that could be the case. LOL It's going to be interesting to see how things play out as he continues to get older.

I haven't updated since last Tuesday and there have been a couple changes since then. As I had said earlier, Benji needed to suddenly go back on oxygen a little over a week ago and on Wednesday he, just as suddenly, no longer needed it. It's the oddest thing; there didn't seem to be anything specific that made the difference.

It was exciting to see him get off it; the doctors had said they didn't want him to go home at this point, as long as he's on oxygen. Again, Allen and I hoped for the possibility of coming home on Friday and considering he was now off oxygen, we were hoping for a better PFT on Friday. Benji's PFT's on Friday were the lowest he's had this admission; 34 percent. We are all perplexed! This is so unusual and no one can figure out why he’s not improving.

On Thursday, the Riley doctors, after consulting with the St. Louis doctors, (where Benji will have his lung transplant), decided to make a change in his antibiotics and added another one. The plan now is to see if his PFT's are up any by the end of next week and if not, we'll start the next option. Looks like I'll need to be changing my airline tickets to Florida next Sunday unless there's some major change in Benji's condition.

As you pray for Benji, please ask God to give the doctors wisdom to find out why he's not getting better and what can be done to get him back to his "normal."

I’ve got to give Tyler a haircut yet and then get some sleep before driving back to Indy tomorrow. I'm still trying to decide if I'm going to drive back up here on Tuesday for the Regional championship game. I really want to be here but don't know about driving 6 hours that afternoon and evening. We'll have to see how things go by then.

We'll let you know if something else changes; next PFT's should be next Tuesday.

Thanks for checking,
Until next time...

Tuesday, February 23, 2010 9:14 PM CST

Good evening,

I'm struggling with some indigestion tonight so will make this brief. It looks like we'll be here a while yet, Benji's PFT's were down to 36 today. We're still all trying to figure out why he had the sudden down-turn last weekend. (On Friday he went from not needing any o2 at all to suddenly needing it all the time, and has been on it ever since.)

Fortunately, he already realizes he won't be home this weekend and seems ok with it. Our of curiosity, I asked him tonight how he'd feel about being here by himself for one night. He said he wouldn't mind at all and when I asked him how he'd feel if both Dad and I were at home for Regionals on Friday night and he'd be here alone, he made this little celebratory gesture with his hands and said, "paaar-tay!" So...we'll see. Maybe both Allen and I can be there after all. :)

That's all for tonight,
Until next time...

Monday, February 22, 2010 11:17 PM CST

Good evening,

So what's been happening with Benji? On Friday we were disappointed when Benji was only able to get a 40 percent PFT. While we're grateful he's not declining, the docs want to see more of an improvement before letting us go. When we left the hospital last November, he had a PFT of 47 percent and we'd like him to get a little closer to that, if possible.

Friday morning there was some indication that Benji may be able to come home on Tuesday (tomorrow) depending on PFT's that day; however, Friday evening Benji had to be put on o2 again, (the first time in a couple weeks), and has had to be on it ever since. So...I'm sure, unless we have something miraculous happen by tomorrow afternoon, we'll be here until at least the weekend. The docs are trying to figure out what to do next, and how to get him back to his baseline.

Benji was so disappointed the previous weekend when he wasn't able to get home in time for the Jr. High basketball tournament and now he's really hoping to be home by next weekend when the varsity plays in Regional s. Please pray that he be able to be home by then and avoid another big disappointment, but if not, that we be able to accept God's plan and for God to give extra strength and peace to Benji.

Benji had a wonderful surprise on Saturday, which helped ease the disappointment he had from not being able to be at the tournament. Wil Shetler, his basketball coach, volunteered to bring the entire team down to see Benji. They came and spent a few hours with him and he thoroughly enjoyed it. They had fun playing the Wii and card games.

Allen and Cory stayed the night on Saturday and Cory went back on Sunday with my brother Jerry and his family, who came down to spend some time with us. Allen stayed Sunday evening yet too and returned home today. He wanted to stay because as many of you know, today is my birthday. I also had a wonderful surprise today, Shirley, my sister-in-law, and Topper and Marilyn Knepp came down and went to lunch with Allen and me. They also brought a big bag of gifts from a bunch of the women from church - Thank you so much ladies for blessing me with your thoughtfulness!! I never expected anything like this and it made my birthday really special!

To top off our busy weekend, Bethany Showalter, (who lives down here), stopped by unexpectedly this evening and we had a fun time playing UNO and bowling with the Wii. (Of course, Benji beat us pretty bad-he's had a lot more experience.:D) It was a busy, fun and special weekend, for both Benji and me and not surprisingly, he was ready to go to sleep pretty early this evening!

We'll see tomorrow how he does on PFT's and I'll try to update tomorrow night to let you know. :)

Thanks for caring,

Until next time...

Wednesday, February 17, 2010 10:47 PM CST

Time to update again although there's not a whole lot to say. Benji did another PFT yesterday and we were pleased to see it go up slightly to 39 percent. We are continuing as we were but are adding a couple more meds. I appreciate how aggressive our Dr. is and she feels it's time to do further testing in various areas, just to make sure we stay on top of things.

Benji's spirits seem to be better this week; he really enjoyed having Cory here Saturday nite and Sunday. His uncle and aunt, Sylvan and Connie stopped by and Aaron and Nicole also stopped in for a little before taking Nicole back to school.

He's also got another surprise coming; Wil Shetler (the JH basketball coach), is planning to bring the whole team down here to see Benji. I'm sure that will be really special for him and it's so sweet of Wil to do that.

In case you didn't hear, we had a different sort of scare yesterday; not here at the hospital but at home. Benji and I are sooooo grateful that the lives of the rest of our family were spared!!!! We had a carbon monoxide leak in our home and Allen, Cory and Tyler ended up spending the afternoon in the hospital on oxygen. Cory had actually passed out before going to the hospital. All four of them, (Aaron too) woke up with headaches and not feeling well, which resulted in Cory staying home from school. I believe God brought to Allen's mind, later in the morning, what the problem might be and he immediately called his brother to ask him to get Cory out of the house. We don't know why, but Aaron seemed to not inhale such a high level and while he woke up with a headache, it didn't seem to affect him much otherwise. Thank you, thank you, thank you Jesus for my family!

Benji will be doing PFT's again on Friday so we'll see what things look like at that point. I'll update again after that.

Thanks for checking and until next time...

Friday, February 12, 2010 3:58 PM CST

It is with great disappointment and a tear-stained face that I tell you Benji will not be able to go home today. As hard as he tried (and he gave everything he had and more), his PFT’s were actually down a little today and the Drs. don’t want him to leave. The Drs. shared our disappointment, both for Benji’s sake and because their treatment plan hasn’t seemed to help. After some conversation, they decided they want to start over and do some testing to see if there’s something they’re missing, and maybe change their treatment plan if needed.

I was not totally surprised at the results; in fact, it helped make a decision that I was questioning anyway. The last few days Benji has really been coughing up a bunch of “gunk” and last evening almost needed to go back on o2. I had actually talked with him yesterday morning and asked him if he thought it was wise to leave today, even if his tests were good. I was concerned that he needed a longer period of intense care in order to keep him from getting worse and needing to be admitted again in a few weeks. He didn’t agree and of course, wanted to go home if possible. He was even willing to have his IV needle taken out during the games and put back in afterward, just so he would have the possibility of playing. If you know how much Benji hates being stuck, it will give you some idea of how badly he wanted to play.

Since we had talked quite a bit about our hopes of Benji's PFT's being up and that going home depended on them, I made sure before Benji did them, he understood that if he didn’t do well he didn’t need to worry about disappointing me for my sake; the only reason I’d be disappointed would be for his sake. After his heroic attempts and inability to get that number over 40, or at least above 37 (which was what his PFT on Tuesday was), he looked so crestfallen. It was a quiet ride back to the room and I could tell he was fighting tears.

I had not previously read “The Christmas Sweater” so I really didn’t know what the book was about, however, I am now convinced that God led me to read it to Benji this week, it spoke so directly to our situation today. I finished reading the book to him shortly before going down for PFT’s because I wanted to finish it before we left. As a result, it was still very fresh in our minds when returning from PFT’s. The book turned out to be an allegory about a 12 yr. old boy (Benji is 12), who after the death of both of his parents became angry and bitter at God and everyone around him that loved him and how we have choices to make when life brings us storms and trials. God wants all of us to live lives of joy and when we face those storms and painful times, we can choose to let God and those around us carry us through them or we can choose to become bitter. Despite those hard times, if we choose to accept God’s plan for our lives and the storms that come with it, we can make it through and maintain our joy through it all.

It was with this fresh in our minds that we sat on his bed, cried together, and talked a little about our pain and sadness and the fact that life is not fair. And how I wish so badly I could take this from him but I can’t and so while we don’t understand why this is the path that he, and we with him, have to travel, we can know that God does understand and somewhere, somehow, he has a purpose for it all.

I really believe the story had a lot to do with how quickly he seemed to accept the disappointing results and to, without anger or even a sense of depression, resign himself to it. It is so neat to see how God was working through this whole situation.

Thank you for your prayers and encouragement; I know you were all hoping for a different outcome as well. We will now most likely be here for at least 3 weeks, since our reason for trying to get home sooner is gone.

Allen and Tyler are on their way down, they are going to spend the night here and either Allen or I will return for the game tomorrow morning. I’m hoping seeing them will help salve some of the disappointment he’s feeling. Cory would have come as well but can’t because he has to be at the game early tomorrow. One of the ways Cory has to walk this path of disappointment with Benji is not having both parents at his game. Jim and Shirley so kindly offered to come stay with Benji so we could both go but we are concerned that it would make it more painful for him if we all leave him to go to the tournament.

So… I’ll periodically update the website over the next few weeks and more frequently if there are any major changes. Thanks again for checking in on us and for your support in so many ways.

Until next time…

P.S. Another God-thing: our nurse this evening came in and told him she understands his disappointment because her son played and won in a state basketball tournament last night and she had to miss it because she had to be here at work.

I also just got a call from my sister Rose; their family left this evening for a trip to Florida and plan to stop in here a little tonight, on their way through . He'll love that surprise!

Update on Sat., Feb. 13: My sister and her family arrived about 9:00 last evening and stayed about 1 1/2 hrs. Benji was so surprised and had a wonderful time with them. He was very excited and happy. I'm thankful for another way that God provided something extra special for him today!

Nothing new medically-wise but, while he has resigned himself to the idea and doesn't seem to be angry about it, he's obviously still not worked through the tournament thing (not that I would expect him to so soon). He's not interested in watching the game either by webcam or dvd. This seems to be his way of dealing with things as I had expressed in a previous journal update; if you don't engage in it, you don't have to think about it. :/ Continue to pray for him that the deep disappointments he experiences don't weigh him down.

I just received a text from Allen with a picture of Cory at the state championship game, WEARING BENJI'S JERSEY!!! I nearly cried when I saw it. Allen said it was Cory's idea and I am so proud of him for thinking of it!!

Benji really brightened up and got a beaming smile when he saw the picture. He asked why Cory was wearing his jersey & I told him it was because he couldn't be there. He kinda shook his head and said, "oh my". It meant SO MUCH to him!!! He is now, for the first time, showing an interest in the game. Thank you Lord!

Monday, February 8, 2010 11:12 PM PST

(Tuesday, February 9th update at bottom.)

Hi all,

Benji's day was pretty uneventful aside from more heartburn and a short bout of stomach cramping. (At the risk of being too explicit, I'm pretty sure it was trapped gas). :) I think that the antibiotics he’s on contribute to some of the other gastric problems. He’s also been off oxygen since Saturday afternoon. We were pleasantly surprised to learn this morning that there is a slight possibility of going home tomorrow. IF tomorrow, Benji’s PFT’s are near baseline, they’ll let us go home and finish the course of IV’s at home! If not, we won’t be going home till at least Friday, after checking PFT’s again. I’m not optimistic of going home tomorrow but you never know.

Before continuing, I should tell you that Benji never reads this site so he won’t be reading the following. I hope no one takes this personally, but even when we started this page and he was initially so sick, he would try to let on as if he didn’t really care about the multitude of wonderful notes he received. (Aside from cousins and other kids his age) I read them to him anyway because I know they really do mean something and help him through these times, even if he doesn’t know it. He also tends not to want to read books about other kids with CF or do activities that are CF related. Everyone deals with these situations differently and I guess this is his way of coping. I’m hoping as he matures he’ll be able to talk more freely about his feelings so we can work through them. Only on a few occasions has he expressed any anger about having CF, the sacrifices he’s had to make and the pain and other things he’s had to endure but I never know how much and what all he’s suppressing.

I’ve been staying busy working on photographs and catching up on Facebook. Those two things can keep me occupied for days!!! Benji seems somewhat blue and complains about being bored, but he’s not very receptive to me playing games or doing other things with him. I guess it has something to do with me being his mom and him being at the age when having fun with Mom is last on his list of good things.;) I'm sure it also has something to do with what I discussed above. It’s interesting though, how quickly he brightens up when Brooke from Child Life comes by to see him. They have an on-going UNO feud, which has been going on for a couple years and he loves playing with her.

I tried to get him into the Super Bowl spirit the other night but he was in no mood to make it as fun as possible. He informed me he’d enjoy it if he were with his friends.:D He even turned down me learning how to play GameCube with him so I just sat on his bed and tried on my own. I had to ask him how to operate the controller so he showed a little interest and got slightly involved at the beginning. However, I think he soon tired of having to deal with someone who couldn’t even figure out how to swing a golf club in such a way to send the ball in the right direction, and he soon lost interest in that as well. LOL

I’m running out of ideas of ways to involve him in things but I did insist that each day I was going to read 1 or 2 chapters of “The Christmas Sweater” whether he wanted me to or not. He did not think that was a good idea at all and most of the time he makes sure he lets me know he’s not really into it. Again, I know better. I know he’s listening and interestingly, the kid in the book struggles with some of the same feelings and reactions that he does, and despite Benji’s valiant attempts at not being interested, he couldn’t help but laugh at a portion that told about the kid’s ornery grandpa. I’m hoping this is just a phase and one day Mom will be cool enough to have fun with again.:) (By the way, so far, this is a really good book for both adults and children.)

Thanks for all your continued support and prayers even in times of non-emergencies and routine visits like this. I have received enough positive responses regarding keeping up the Caringbridge site so we’ll keep on as before. :)

Thanks for checking,
Until next time…

P.S. On second thought, there are times when Benji is more receptive to me and shows enjoyment at doing things with me; it seems to be those times that he's most vulnerable or in critical situations. Despite the stress, intensity and fears that we experience at the time, those are precious moments!

P.S.S. I hope I can get some sleep because I accidentally took the wrong pills tonight and these pills tend to keep me awake. :/ It is now 2:07 a.m. and I'm wide-awake. Should catch up on a lot of computer stuff tonight.:)

Tuesday, Feb. 9. 2010
Just wanted to let you know that we didn't go home today. PFT's were 37, which isn't terrible but being here till Friday will give him a few more days of bed rest and targeted treatments. So...unless something major happens or PFT's fall, we plan to come home on Friday. Pray the weather cooperates!

Until next time..,

Saturday, February 6, 2010 9:45 AM CST

Hello, we're back at Riley. Too soon for our tastes but...Benji's been going downhill for the last few weeks and got to the point we needed to bring him down on Thursday. Not being a planned hospitalization, Allen brought him down on Thursday and after wrapping some things up at home, I came last evening so Allen could go home. (He has some responsibilities there today) Sorry to miss the church Valentine's supper last evening, was looking forward to it.

Benji's loved being on the JH basketball team this year and while he doesn't get to play a lot (nor can he handle playing a lot), I think it contributed to his decline; wore him down plus too many missed treatments because of practices and games.

We're hoping to be able to take him home on IV's; he'd really like to be home for the JH bb tournament next weekend. They have let us do that before but don't know if they will this time. They said they won't know until at least next Fri.

Don't know how many still read this; seems like everyone's on FB now. It would be helpful for me to know if you do and would appreciate a note to let me know if it's still worth keeping up. :) (For those that don't know, you can leave a message by pushing the guestbook tab at top of page.)

Thanks for checking...

Monday, November 23, 2009 6:20 AM CST

Hey all,

This ended up being one of the shortest stays we've had. We were able to come home about a week ago and he's been doing quite well. Just hope to keep him so over the winter and through this H1N1 scare!

Until next time...

Tuesday, November 10, 2009 10:41 PM CST

There's not a lot to update; Benji's PFT’s have stayed steady. We were both anxious to see what his PFT's would be when he did them last Friday, curious to see if Tuesday's was a fluke or something. We were disappointed when the first two tries were only 38 and 39 but he picked it up after that and got a 45 and 46; that made us feel better. Today when he did PFT's he got another 45.

This admission is a little different; we typically use his PFT numbers to determine when to go home but not this time. His cough has been worse the last couple of months and since we're here, he's been coughing up a ton of mucous with his CPT treatments. (Those are the pounding treatments we used to give him when he was little, which have been replaced by the Vest) It's always good when he can get that "gunk" out, so we're pleased to see him coughing it up. The other day he coughed up a small chunk of old blood and our thinking is that it may be some of the old "buried" mucous that he hasn't been able to get up. (We could tell it was old because it was a dark red color.)

Benji prefers the CPT to the Vest so whenever we come to Riley we request it. Technically, the Vest is supposed to be more effective than the CPT but Allen and I both think he gets a little better results with the CPT.

The plan is to just do a full 2 weeks of antibiotics and the CPT treatments and hope that'll help get him through the winter without needing to come back. We're expecting to be able to come home some time this weekend.

Thanks for checking, until next time...

Wednesday, November 4, 2009 11:20 AM CST

Benji's back at Riley for a "tune-up". Those of you familiar with his history may recall that means it’s not an emergency or extremely concerning admission. It is usually a 2-3 week admission and is just for a round of IV antibiotics to help keep him "on top of things". This was planned in September at his regular clinic visit since he’s had more of a cough the last several months and his lungs have been pretty crackly.

We were admitted on Sunday evening. We had originally planned to bring him in a week earlier but Allen had gotten tickets for the entire family to the Colts-49ers game on Sunday, so we changed the date and Benji and I just stayed down here after the game. Worked out well.:)

Last week he had his, now annual, check-up in St. Louis. Previously it had been bi-annual but last year they said he was doing well enough to not have to come back for a whole year! This visit was a bit surprising; it didn’t go as well as expected. Recently, his normal PFT’s are typically around 42-45 percent but at St. Louis he only had a 31 percent! I wasn’t able to be in the room when he had it done, so I didn’t see the procedure or what exactly happened, but when they came out and said "31", after my initial shocked reaction and partly with tongue-in-cheek, I responded with, “Riley could have gotten it higher.” I just figured since they know him at Riley, they could have worked with him to get the results a little higher.

It was a bit of a different visit since previously, we had always had the same staff. This time however, we saw a different Dr. (our regular Dr. was out of town that week), the Transplant Coordinator was new and the Nurse Practitioner was new. So…none of them really knew Benji. I was surprised at the Transplant Coordinator’s response when Benji had a coughing fit in the room – this was nothing unusual for Benji (as those who know him are well aware) and I would have assumed it’s not unusual for most lung transplant candidates, but she seemed very alarmed about it.

I guess, because of what they saw with the PFT’s, his coughing(?) and his demeanor, they thought he was in pretty bad shape. (He’d gotten to bed late the night before and was kinda a tired, grumpy, unsociable grouch;], and I think it made them think he was feeling sick.) As a result, the next day, we got a call saying they had spoken to his regular Dr. and our Dr. at Riley, and were recommending he not wait till Sunday, (5 days!) but be admitted immediately. After I explained to them that as someone who knows him very well, I felt he definitely needed a tune-up but that I did not believe this was an emergency condition that required an immediate admission. I also explained the reason for putting it off a week, was because of the Colts game and he would be extremely disappointed to have to miss that. She told me then, "you have to do what you have to do, but this is what we’re recommending." So…we did what we had to do… and continued with our original plan.:)

Ok, so now for the funniest and best part -- yesterday, Benji got a PFT of 47 percent!!! That is the highest he’s had in at least a year, maybe two!! Benji’s immediate response was to laugh and say, “Why am I here?” I know what he means because typically, his PFT’s are the biggest determinate in his release, however, the doctor’s been talking for a while about how crackly his lungs have been and we’d like to get rid of most of those. My mouth is still hanging from the result and I’m still waiting for them to tell me it was a fluke and something was wrong with the computers or something. One thing I am sure of, it wasn’t an emergency to get him in! :P

Overall, Benji’s feeling well. Aside from the spasms of stomach cramping he’s struggling with again, he’s not acting very sick and he’s out of bed more often than normal. We’re trying to figure out why he’s getting the stomach cramps, it’s something they’re doing here because he doesn’t get these at home.

Yesterday they brought a basketball hoop and ball, and a stationary bike into the room as an incentive to get him out of bed and I guess it’s working. It got him out of bed yesterday and last night he was telling me how today, he wanted to shoot baskets and ride the stationary bike and work out to keep him in shape for basketball.

He is on the basketball team at school this year and couldn’t be more excited about it! Fortunately, our school is small enough that if you want to be on the team, you get to be on the team, but it doesn’t necessarily mean you get to play a lot. They had just started practice last week and he’d had 2 days of practice before coming in. I was actually surprised that, with all the conditioning they did, he didn’t complain or decide he’s not too sure about this basketball thing after all; but so far, he’s still excited about it. I’m glad for his desire to push himself to do difficult things.

There’s been a rule change here because of the flu epidemic; they actually have security guards at the ER entrance (which is a main entrance to the hospital) so only ER patients come in that way. Everyone else is supposed to come in through the front entrance and only 2 ADULT visitors at-a-time, per patient are allowed. Benji was disappointed to learn that Cory won’t be allowed to come visit him in the hospital. While it’s disappointing, I suppose it’s good to be safe; after all, hospitals are one of the most common places to pick up a virus.

Another change for us this time: we had to go to a different floor. For the last five years we’ve always been on 3A but since our last admission, they’ve changed some things and all pulmonology patients now have to go to 3B or 2A. So, it was with some disappointment about having to get used to a new floor with new staff, that we rode the elevator to the 3rd floor. What a wonderful surprise when, through the window of the 3B entrance, the first face we saw was one of the CNA’s from 3A! We didn’t realize that when they reorganized, most of the staff also moved. Now we have the best of both worlds! The rooms are really nice and we’ve got a bunch of familiar faces too. :D 3B has recently been remodeled, whereas 3A still has a very old and dated feel; these rooms even provide a bed for the parent and I don’t have to bring in my air mattress.

For now, there’s not a lot more to tell you and I won’t be updating every day since there’s not a lot of unusual activity. Thanks for caring and checking up on us.

Until next time…

Monday, July 27, 2009 5:10 PM CDT

It's time for an update but I'm sure you all know that "no news is good news!" Benji's remaining stable and we're planning to go to St. Louis for his annual checkup in the fall. This summer is going fast and he's enjoying all the summer things along with the others. So much for now.

Saturday, February 14, 2009 6:51 PM CST

Happy Valentine's Day!

We’re home! What a turn-a-round we had on Wednesday!! We had a nice and unexpected surprise when Benji’s PFT was up NINE percentage points from Monday, enough to get him released. We are so grateful!! After Monday, I was afraid we’d have to be there a couple more weeks. We’re not sure what the difference in his PFT was but I’m guessing it has something to do with having a couple more days to recoup from the crummy 2 weeks he had. Whatever the reason, we’re just happy to be home! We have a check-up scheduled in 2 weeks and we have no reason to think it won’t go well. Thanks for the notes and cards and for keeping us in your prayers. Hope we don’t have to do this again for a while. : )

Until next time…

Monday, February 9, 2009 5:30 AM CST

Ok, it’s time to update again but good news this time! Benji’s been a different kid over the weekend! Saturday morning the Drs. came into the room and said they’re going to be discontinuing Benji’s antibiotics. They haven’t been able to figure out what the cause of his stomach cramping is but decided that since he’s had 2 weeks, a full course, of antibiotics, they could discontinue his meds for the weekend in hopes that if the meds were causing the problem, he’d be better by Monday and able to do PFT’s. It’s amazing the change in Benji since then! The nurses keep commenting on how much better he is and I’m quite sure he’ll feel well enough to do PFT’s. Of course, it’s often difficult to predict, but I’m expecting his numbers to be up quite a bit. I’ve seen an improvement in him and the Drs. are saying his lungs are sounding a lot better. So…I’m again hopeful that we’ll be able to come home by the end of this week. Pray for good numbers!

Benji can’t say he didn’t get any company this weekend! Saturday evening his Uncle Sylvan and Aunt Connie came down and brought Cory with them. After spending a while here they left to stay at a hotel for the night and left Cory here to stay with us. Since Dad wasn’t here this time, he got to sleep on the air mattress with me instead of on those chair beds. Those are not very comfortable to sleep on. Benji and Cory spent a while shooting basketball in the room. (They’d brought a basketball and hoop to the room last week to try to get him out of bed and get some exercise. However, most of last week he didn’t use it because he didn’t feel well enough; until the end of the week, he did have a couple hours in a day that he felt well enough to want to get out of bed and play a little.) I think Benji really enjoyed play with Cory and Cory even got one of the nurses to say she’d play him in pig but, to his disappointment, she didn’t have time to before he had to leave. : (

So, Sunday morning, Sylvan’s came back up to the room and were here for an hour or two before we got some more company: Grandma and Grandpa Troyer and Dale, Jim, Shirley and Megan, and Allen, Tyler, Aaron and Nicole. (Aaron’s girlfriend) Sylvan’s were ready to leave by then so we only had 13 people in the room instead of 15. : ) We all visited here for a while then Cory stayed with Benji while the rest of us went to get some lunch. It was good to see everyone and while Benji often doesn’t express it, I know how much it means to him.

I’m going to stop for now, but will update later today when we get PFT results.

Until next time…

Well, the results weren’t what we wanted to hear. Although the Drs. and I expected his PFT’s to be up, they were actually down a couple points. I don’t know if the fact that he’s not been feeling well the last 2 weeks may have something to do with it, but it may be. At this point, they want us to try PFT’s again on Thursday or Friday then go from there. This admission, the Dr. didn’t put him on the same antibiotics as usual; those are really strong, and in an effort to keep him from becoming immune to them, she put him on a less potent antibiotic. I’m guessing that’s also part of the reason. I figured she’d now put him on the old meds, but instead she’s putting him on Cipro and steroids.
I’m really disappointed because he’d been on the Cipro for 2 weeks before we came in and it didn’t seem to help. Steroids have never seemed to help him either so I’m concerned that doing this treatment plan will only prolong our stay. I guess we’ll see the end of this week.

Thanks for checking on us.

(Hey Marlis, I'm sorry if we're a little slow replying to your emails but for some reason, our email isn't working very well since we're down here and sometimes it'll take a whole day to get something sent. It usually ends up going through but I never know when. We are getting your emails but I'm not sure when you're sending them. I sent you one this morning that you'll probably get sometime.: D )

Monday, February 2, 2009 8:43 PM EST

Good evening all,

Here it’s been 3 days already that I haven’t updated this site. Naughty me! Since the last time, Benji seemed to be progressing a little each day. The diarrhea and the nausea had improved but (oh my goodness! I just checked to see when my last update was and it’s been 5 days!! For those of you who regularly check, I’m so sorry.) Anyway, back to Benji: So, last Thursday he had another pretty severe stomach attack but didn’t have any on Friday. I’m not exactly sure what those feel like but, from his reactions, I’m guessing it was comparable to my gall stone attacks that I had a long time ago; those of you who’ve had kidney or gall stones know exactly how painful that is! In most of his attacks, the severe, unbearable pain lasts approximately 10 minutes before they subside.

We’ve been upping and lowering his feeds according to how he’s doing but it doesn’t seem to have too much to do with the cramping since there’s no obvious pattern to it. So he went without any severe attacks on Friday but Saturday evening he had another one. Went without any yesterday but today was horrible. Off and on this morning, he’d complain about discomfort, but nothing very severe. However, this afternoon he had the worst attack he’s had. It lasted around 45 min. to 1 hour and was just excruciating! On a scale of 1-10, he gave it a15. I did whatever I could to help him through it but he could find little relief. Finally, the pain began to subside and eventually he fell asleep and slept for a couple hours. After this episode I requested, and got an order for, some Fentanyl (a strong pain medication) for the next time. There’s no way I want to see him go through that again!!

They’ve been doing all kinds of testing to find out if there’s anything going on besides the C Diff but so far, everything’s come back negative. The Drs. are really unsure as to what may be causing this but if it keeps up, something more is going to need to be done find out what the problem is.

His coughing seems to be improving a bit; however, he’s not been able to do any PFT’s since we’re here because he hasn’t felt well enough. We tried to do one last Friday, but he couldn’t stand up to do it since it made him too dizzy and the numbers were so low she didn’t even chart it; she just put down that he was too sick to complete the test. For reference sake, his baseline PFT percent is around 45 to 48. When he was admitted, his PFT was down to 38 percent, and on Friday it was 30 percent.
I’m starting to think this admission is going to be longer than expected, more for the C Diff though, than the lungs.

Allen, Cory and Tyler came down Saturday evening after Tyler’s games. It’s a lot more difficult for them to come down since we have kids playing high school basketball. So, they came down, spent the night (we all slept in the room) and stayed until around 3:00 the next day. It was good to see them, even if it was just for a little bit. I have to say though, as our kids get bigger, it’s a little more difficult for all 5 (or 6 if Aaron comes along) of us to stay in one little hospital room for a whole weekend. It gets a little crowded and stuffy. It's not like the boys are 13, 11, 8 and 6 anymore. LOL! I think Benji’s feeling are mixed when it comes time for them to leave; on one hand, there’s a disappointment at being alone again; on the other hand, there’s a feeling of relief to get his room back and get to his reading. : ) This guy devours books and it’s quite timely that the Read-A-Thon started today. By the way, he's looking for sponsors; although I'd have to say one is much safer giving him a lump sum as opposed to per-hour. ; )

Please pray for Benji; these attacks he’s been going through have been very difficult. Pray for healing, of course, but also for strength to endure the difficult times and that he not become bitter about circumstances.

Thanks for the prayers I know many of you have been offering and thanks as well for the notes, emails and cards.

Until next time…

Thursday, January 28, 2009 11:00 EST

Benji had a better day today; his stomach seems to be settling down a bit. Poor guy was so starved by today noon after having been on only clear liquids for about 24 hours! He ate almost an entire McDonald’s cheeseburger for lunch; I had to tell him to slow down a bit, as he was scarfing it down, so his stomach wouldn't have to work overtime! It is really fun to see him actually hungry though.

He didn't have too much reaction to eating so tonight he decided he wanted a McChicken sandwich; he ate most of it. Nice to have a McDonalds so close. : ) He is still having some diarrhea but everything seems to be improving.

Thanks for the notes Marlis; Benji enjoys hearing from you. You're right, he is reading quite a bit as well and he made sure we got to the library before we came down here so he'd have plenty of reading material. I'm hoping we start doing some of his homework tomorrow.

Today we also put an Indiana Jones Lego set together that he got from Child Life. Well, actually, Benji put it together; I just sorted the pieces and helped him find the ones he needed. It's funny how much he enjoys doing Legos in here but the minute we leave, he's done with them. When we used to be here a lot, Child Life would often set back the bigger kits so Benji could do them when he came in.

He also played UNO again with Brooke, the Child Life specialist, with whom he's had this on-going competition. At times, they’ve kept track for long periods of time; Brook says Benji always wins but I’m not so sure…; )

That’s about all for now,

Until next time…

Monday, January 26, 2009 5:47 PM CST

Ok, so there was a reason Benji was running low-grade temps, having those tummy aches, diarrhea and just overall feeling kinda crummy. We found out last night he has C.Diff infection. (Of course, that's short for a bigger word but even the Drs. don't call it that.) This is a "bad" bacterium we all have in our intestines but most of us have enough "good" bacteria in our bodies to fight it off. However, those that take a lot of antibiotics, which of course Benji does constantly, or have a broken-down immune system can't fight it so it takes over and becomes an infection. It is treatable with antibiotics but it's kind of a catch-22 because the antibiotics are what originally break down the good bacteria. The other possible problem with antibiotics is that those who are on certain antibiotics for a long time become resistant to them. Hopefully the treatment will take care of it and he should be feeling better within a couple weeks.

He had a better day today than yesterday. He seemed like a different kid this morning when he woke up; was much more chipper and talkative. However, towards noon I could tell by his demeanor that he wasn't feeling so well again and he's been struggling with tummy aches (but not near as severe) and nausea all afternoon. Due to the infection he's done much more vomiting than usual the last couple days, and has had to be on oxygen, probably due to his not feeling so well and his worn down system. The majority of the pain and other symptoms should, hopefully, be over with within a few days.

He's currently playing the Wii game system that the Child Life Specialist brought in for him today. All weekend he was looking forward to Monday when Brooke (the Child Life Specialist) would be here and could bring him the Wii and other stuff. She got the Wii for him and brought some other things up as well: Lego's, a basketball game and some other card games. He always gets so much stuff from them!

Most likely the next time Benji's admitted, we'll be in the new Towers (the new hospital being built right beside the old one). The rooms in the Towers are all private and so much more family friendly. I won't have to bring in my own bed or fridge/cooler anymore! : )

The downside to the move is the hospital floors are going to be divided differently; currently they're mostly divided by age and in the new one they're gonna be divided by department. So...3A will now merge into the Pulmonology Floor and there will be kids of all ages there from infant to 18 plus. On 3A there are very few infants so I hope the walls are soundproof. : )

Along with the units changing, some of our nurses are not going to be going to Pulmonology. : ( Most of them are going to move over(yeah!!)however, a few chose to go to some other unit and a few of them didn't have a choice since they choose by seniority. We'll still get to see them sometimes cause they'll stop by to see us when they can.

The teacher stopped up this evening to get info on Benji and find out whom to get a hold of to get his assignments. So, if he's feeling well enough, he'll get to start catching up on schoolwork tomorrow or the next day. ; )

FYI: Thought you might want to know that in conversation with one of the nurses here, we were counting the amount of times Benji has been admitted to Riley since October 2004. In the last, just over 4 years, Benji has been admitted 17 times! BUT, in the last year and a half, only 2 times!!! The remaining 15 were in the previous 2 1/2 years. (That would be an average of once every 2 months.) WOW! Now only twice in 15 months; what an improvement!!! We are so grateful for this whatever the reason is for it. (If you've already seen this on my Facebook page, please excuse the repeat.)

I think that's all for now.

Until next time...

(You'll need to excuse us if you saw 2 journal entries on the 26th; it may have been a bit confusing. If it sounded like Allen didn't know I had already updated the site, it's because he didn't.; ) For some reason his computer didn't show the updated pages when he checked it; thus, we both updated. Sorry about the overlaps.)

Sunday, January 25, 2009 9:01 PM CST

Hello everyone,

It's been a while since I last updated this but felt it was time to give an update on Benji.
He has been feeling a little worse for the last couple weeks so we put him on an oral antibiotic and felt like he was doing some better. However he had his checkup on Friday (01/23/09) and the Dr felt that his lungs were not doing very well. Therefore she admitted him for a tuneup to try to get his lungs to perform better than they are.
This always brings back the normal emotions for us when we are faced with the reality of his health and what the future may hold for him. It has been so good to have him at home and feeling good and seeing him interact with his brothers and friends on a normal basis. He has struggled with some unusual emotions this time. In the past he was ready to go back to the hospital but this time he really did not want to miss school! Pray for him as we work through those feelings of disappointment!
Thank you for checking in and may God Bless you!

Allen

Sunday, January 25, 2009 11:35 AM CST

Not much to update on Benji. The biggest problem he's been having is stomach aches. It's not unusual for him to have tummy aches, but he's had a couple that were very severe!! Might do an ultrasound and some other testing today to find out what's going on.

Until next time...

Friday, January 23, 2009 8:02 PM CST

Just to let you know, Benji was just admitted to Riley for a "tune-up". It's something that's quite typical for Cystics, often every 6 months or so. We'll be here for 2 to 3 weeks for IV antibiotics and more intensive therapy. We'll let you know if anything critical comes up.

Till next time...

Monday, December 22, 2008 8:36 AM CST

Hello everyone!
We hope you all have had a good year! Depsite all the dissapointments in life there usually are plenty of good things we can focus on and appreciate. A few of those things are Benji's health and how God has provided for us in the last year.
Benji has been doing very well. He has been hospitalized only once this year for a tuneup! We are so grateful for that and pray that it can continue. It is often difficult to answer the question that many of you ask; what has contributed to his improvement in health? The two things we can contribute to the change is prayer and the surgery that was performed in 2007 called "Pluerodesis". This was when thay removed a small amount of his lung and "roughed" it up so it heals to the lining of the lung. This helped him from getting the holes in his lungs.
We thank the Lord for his faithfullness to us and his healing power, whether that's through the doctors or supernaturally. We have been so blessed this year to have our family together and bonding more than ever since we can spend so much time together.

Merry Christmas!!
Thanks for your continued prayer and support!!

Allen for the Eashes

Tuesday, October 21, 2008 6:55 PM CDT

Hello everyone,

We have good news from St. Louis! We had a check up on October 13th in St Louis. The Dr was very pleased with Benji’s progress. In fact he was so pleased that he said we do not need to come back for a whole year! This is very good news for us since we have been so used to being in the hospital so much. The past year has been a wonderful reprieve for us to spend so much time at home.

Benji is going to school about 9:45 every day so far this year. He is very much enjoying school and is getting used to being more “normal” than in the past. Of course we are grateful more a more “normal” family life as well!

The Dr said he does not anticipate anything happening for at least a year with Benji and he could possibly go “years” before needing a transplant rather than months. That is such great news to us especially in light of medical technology needing to improve for real success in lung transplants. One other big benefit to waiting at least a year is that Benji would then be in the adult bracket for transplant. This means that he would then be given a lung first if he needs it the most. From age 12 and up it is based on need not time on the list for a transplant. We had known that was the case but I had not dreamt that we would make it long enough to be in that situation. Praise God!!

As always, thank you for your continued prayers and support!

Until next time…
Allen

Friday, July 25, 2008 2:54 PM CDT

Hello from home. Yes, we are home again; we came home late Friday night. I saw a definite improvement in Benji the last week at the hospital. He had a 40 percent PFT on Monday and by Wednesday he was mostly on “room air” (no oxygen) at 94 to 96 percent. After getting a 46 percent PFT on Friday afternoon, they let us come home. I was so excited to see him get back up, almost to the 48 percent he had in April.

Benji was quite concerned about getting home in time to go to the fair so he was pretty happy to be coming home on time for that. (It started the day we came home and goes through this week) It’s hard to believe we’ve only got about 3 to 4 weeks left before school starts again. Benji and I have only been home 4 weeks since school’s been out since we left for vacation the last day of school and were in the hospital almost 3 weeks.

Tomorrow evening on ESPN is the Kroger Nationwide Series NASCAR race and Benji’s name is going to be on Brad Coleman’s car (#27) along with 26 other Riley kids. I guess the names will be on 27 different handprints; we thought this was pretty cool and it’s another one of those special benefits Benji gets as a result of his disease; he and the entire family are really so blessed in so many ways!

Thanks for your continued interest in Benji’s condition.

Until next time…

Sunday, July 13, 2008 8:00 PM CDT

Yes, I know it’s time to update this website. : ) There really isn’t much to update you on; things have been pretty “ho-hum” so far.

Benji did have another PFT last Monday and one on Friday. The Monday one was back down to 38 percent : ( and the Friday one was a little lower, 36 percent.

I wasn’t all that surprised when his PFT’s were down on Monday; the 41 percent had felt a bit like a false read to me. It was his first try and none of the others after that even got into the high 30’s. Usually his best one is not the first try. So… we’re still here. The plan is to do another PFT on Tuesday and go from there; my expectation is that we should be able to come home by the end of this week or the first of next week, but I don’t know for sure.

Mom, Dad, Dale and my brother Jerry came down for a short visit today and brought Cory along. Allen would have come for the weekend but he got a pretty bad cold and was concerned about giving it to Benji so we missed being able to see him this weekend. We thought maybe Cory would be able to stay for a couple nights but that didn’t work out since Cory starts basketball camp tomorrow morning. Benji really enjoyed having Cory here for the short time he could be here; he especially misses Cory when he’s down here. They’re pretty good buddies.

Last weekend Allen, Cory and Tyler all came down to visit then on Sunday Allen, Cory and I went home for the night so I could keep a doctor appointment on Monday. Benji was excited to have his big brother Tyler stay here with him for the night. On Monday Allen and I drove back down and Tyler went back home with him. We often don’t get to see much of Aaron when we’re down here, he’s usually got too much stuff to do at home with his friends. You know how busy life can be as a teenager. : )

I don’t have much more to say for now so I’ll sign off.

Until next time…

Friday, July 4

Wow, it’s been a great year! Since July of last year to this visit we’ve only spent 7 days in the hospital! We’d never have thought that to be possible a year ago! We don’t know what to attribute that to except the pleurodesis Benji had last summer and/or a miracle. Whatever is causing the improvement in his health, we praise God for it!

This last school year Benji went to school late each day, as before, but he went all five days. The previous 2 years he’d only gone 3 days a week so this was a wonderful improvement. It was amazing that with all the sickness and bugs that were going around, even with the adults, he made it through without any major hospitalizations! He was also able to play little league baseball this summer with surprising endurance; he was even able to steal bases a couple times and make it the whole way around a few times to make some runs. Last summer he wasn’t able to play at all and though he played in 2006, he was barely able to run from one base to the next!

Benji has been hospitalized again for a “tune-up.” A tune-up is being hospitalized for a round of IV’s, rest and more intense treatments. Our typical hospital stay for a tune-up is 2-3 weeks which is our expectation this time as well. At Benji’s April checkup, Dr. Howenstein told us to come “prepared to stay” at his June checkup. Even though in April he had a PFT of 48 percent, his lungs were sounding tighter than usual and we did notice an increase in symptoms over a period of time.

At his check-up on Monday, his PFT’s were down to 32 percent, which obviously is not good and the Dr. didn’t have to think twice whether or not she wanted to admit him. However, after calling the hospital she came back to say that the hospital was so full that it would be at least Tuesday and maybe Wednesday before they’d have a room available. That put us in a bit of a bind so since we really didn’t want to have to drive home and back down again we got a hotel room for the night and by the next morning they had a bed available. Of course we’re back on 3A.

While it’s been wonderful to not have to be hospitalized for most of the last year, I was really looking forward to coming and seeing who all still works here; to my surprise, almost everyone is still here and it was really good to see everyone. Each day someone else sticks their head in the door to say “hi.”

Benji actually got a bit hyper and was definitely excited when he found out he was going to be admitted. I’m not sure what all contributes to that but he does get a lot of attention here-some of the nurses fight to take care of him, he doesn’t have to do anything (at home he of course helps with his treatments and feeds and other small chores around the house), and he gets one-on-one attention from me. He also gets to play much more GameCube and watches a lot more TV while he’s here as well.

He has complained more about being bored this time, however, it seems he doesn’t want to do most of the things I suggest. We did stop at Borders on Monday evening to see if we could pick up a couple of books for him but they didn’t have what he wanted. He’s currently reading the children’s version of the Left Behind series and is ready for number 20.

I’m going to try to get out in the next couple day to pick some up at a Christian bookstore. He says there are 40 books in the series so if I could get the other 20 books, he’d have enough to keep him busy for at least a week. : ) He loves to read and can fly through books like nobody’s business!

Yesterday we did another PFT and it had jumped from a 32 to a 41. It’s amazing that he jumped that quickly so we’ll see what it is next Monday or Tuesday and go from there. This may be a visit on the shorter end of the normal 2 to 3 week stay.

This June Benji and the family got to take his Make-A-Wish trip. This was originally scheduled for March of last year but had to be put off because of his poor health and pneumos at that time.

For those of you who aren’t familiar with Make-A-Wish, it’s a wonderful, non-profit national organization that makes wishes come true for children with terminal illnesses. Those wishes can be to meet someone special or famous, to receive something (for instance a computer or jungle gym in the back yard) or a trip. Benji immediately knew what he wanted to do; he wanted to go to Disney World and on a Disney cruise. Make-A-Wish told him they couldn’t do both and to choose one or the other so we told him if he chose the cruise, we’d extend the trip and take him to Disney World ourselves afterward.

That was our plan for last year however, when he began having pneumos last year, the doctors told us they didn’t want him to do the rides at Disney World. The high velocity of the rides could easily do damage to his lungs and cause him to have more pneumos. So, even though he was really excited about going on the cruise, he was pretty disappointed about not going to Disney World.

On the last day of school, that big, long limo you see on the pictures, pulled into our drive to pick us up to take us to the O’Hare airport. What a way to start the vacation! Make-A-Wish paid for the entire trip for our whole family; this included the flight and the cruise plus extra spending money for excursions, food, drinks and souvenirs. We didn’t have to spend anything out-of-pocket. All the way through we were given star treatment; we got to board the plane first, didn’t have to wait in lines and aside from the extras Make-A-Wish provided, Disney also gave us extra excursions and special treatment. Each evening we’d come back to our room to find something special lying on the bed from Disney’s Make-A-Wish representative.

The cruise went to the Bahamas and Disney’s private island called Castaway Cay. We went snorkeling a couple times, parasailing, and went on a glass bottom boat tour. We all had a lot of fun, as you can tell from the pictures, and are so grateful to Make-A-Wish for this awesome opportunity. It was really a special vacation for our whole family! We hope you enjoy the pictures.

I guess that’s all for right now, so until next time….

Sunday, May 4, 2008 6:49 AM CDT

Hello,
Good news again! Benji had a check up on Wednesday and his Dr was very happy with how he was doing. We feel so blessed to be able to continue to stay home so long! He will not need to go back until the end of June unless something happens between now and then.
Something exciting is happening for us this month as a family. Benji will be going on his Make A Wish trip and of course he will be accompanied by all his brothers and Mom and Dad! We are all looking forward to this trip and are very thankful that we can go.
Thanks again for all your support and prayers!

Allen

Sunday, April 6, 2008 6:56 AM CDT

Hello everyone!

Thanks for continuing to check in to see how Benji is doing. He has been doing amazingly well! We have spent 6 days at Riley since July of last year, PTL! He is feeling really good and has been enjoying the first days of Spring.

Yesterday I (Allen) went out to the Golf course with Cory and Tyler. Benji wanted to go along and ended up walking all nine holes with us. He also had his first baseball practice on Thursday of this week. He is very excited about baseball and being with the other kids.
We have an appointment on April 16th for a checkup at Riley and expect to have good results and come back home. Of course things can change very quickly for him healthwise. But, he has been able to get rid of a couple coughs and the flu this winter without needing to have the normal IV to get over them.

Thanks again for checking in and keep praying for Benji!

Allen

Friday, February 29, 2008 11:20 AM CST

Hello everyone!
We are still chugging along! Benji had a flu bug while we were in St. Louis for a check up. They tested him because he had fever and cough while we were there and disovered he had influenza "A". Fortunately he is feeling better again but not quite back to normal.
Benji has been such a blessing to us and we continue to feel blessed with our family and the situations God has put us in, even though we would not have chosen some things we have had to deal with.
We also continue to be grateful for our family and friends as you all lift us up n prayer! Thank you and God Bless!

.....Allen

Tuesday, February 5, 2008 9:17 AM CST

Hello Everyone,

I am happy to report that Benji is still doing well! He has been in school every day and is enjoying every bit of it! He is full of energy and we are so blessed! Keep praying that this continues for a long time and that whatever comes we will be given the Grace and Strength to face the future. May God be blessed by all of our lives as we live each day in uncertainty.

Until next time....

Allen

Tuesday, January 8, 2008 4:43 PM CST

Happy New Year!!
We had a good vacation with the family in Florida and came back home Sunday PM. Benji was not doing so well before we left so Dr. put him on IV antibiotics for 10 days before we left. He seemed to improve steadily after he was off the IV and still is. We had a checkup at Riley yesterday and he is doing well! PTL!!
We plan to go to St. Louis on February 18th for a checkup there and back down to Riley in March if all goes well.
We are looking forward to our lives slowing down a little after the Holidays. Hope you all had a good Christmas!

Until next time......

Allen

Friday, December 21, 2007 7:30 AM CST

Hello everyone!

May the Christmas Season bring you Peace and Joy through Jesus! We have thoroughly enjoyed our last few months at home with the whole family! Benji is doing well but is on IV antibiotics right now for 10 days. He had been coughing more and we felt it would be good to take care of that before we went on a family vacation over Christmas.

Cindy has been busy at home getting all the Christmas cards sent out before Christmas! The rest of us are looking foward to spending time at home and on vacation during the Christmas break.

It still seems unreal that we were thinking we would be in St. Louis during this Christmas season for Benji's lung transplant. We are so grateful that we have been able to delay that this long!

Keep praying......

Allen

Sunday, November 18, 2007 6:51 PM CST

Hello everyone!
Benji was released from Riley Monday November 12th with two IV antibiotics. We returned on Friday November 16th and the Dr was very pleased. We returned home with no IV and back to his normal routine.
We feel so blessed to be home for Thanksgiving and are looking forward to a family vacation in Florida during that time. We are thanful that we are not in the hospital every other month like much of last year!
Pray that this can continue for a long time and for the transplant to be delayed even longer! (Of course God's will is our desire)

Thanks for your support and prayers!

Until next time....
Allen

Wednesday, September 12, 2007 10:34 PM CDT

Hi everyone,

We are back in at Riley. We came down yesterday (Allen & Benji) for a checkup and assumed we might be staying since his last checkup did not go as well as we had hoped. The Dr said she is going to try to have us stay until Monday and then go home on IV until Friday when we would come back down again for another checkup. If we can pull this off it will be a record hospital stay for us since most of the times we are here for a minimum of 2-3 weeks, but usually 4-5 weeks.

We have had a nice break from this place since the last time we were admitted was in July of this year. Benji is feeling well but we felt like it would be good to have a tune up on his lungs with the increased coughing he has had.

Until next time…

Friday, July 20, 2007 10:50 PM CDT

We are home!! Benji has improved incredibly since having his tubes removed on Monday and hasn't even needed to be on oxygen during the night for the last 3 nights!! (Typically oxygen levels decline when laying down and he has been on nighttime oxygen for more than a year.)

We had a nice welcome home from most of my family who were here when Benji and I arrived home around 7:45 this evening.

We have a follow-up appointment scheduled for August 1, then a check up in St. Louis on August 3. Continue to pray for Benji's health!

Thanks for all you care and support!!

Until next time...

Tuesday, July 17, 2007 11:53 PM CDT

More good news!! Yesterday morning Benji had both chest tubes removed! I was so grateful and relieved (as of course was Benji) that this time they took him down to surgery and put him to sleep while they removed them, since removing the chest tubes last January had been such a traumatic ordeal!!! They called for him around 8:00am (very early for this room; Benji usually sleeps until 10:00 or 11:00) which meant it was about 8:30 by the time they took him down, because of all the time it took to make all of his monitors and equipment portable. After leaving the room, it only took about an hour total, from the time they left till the time they brought him back. He was already awake when they brought him back and amazingly, didn’t sleep again until afternoon. They said everything had gone very well and Benji sure is enjoying having those miserable tubes out!

Allen, Cory and Tyler had gone to a Father-Son Basketball camp in Ohio over the weekend so they weren’t able to come on Friday or Saturday. However, they came home through Indy and got here around 7:00 Sunday evening, all rather tired and sore - especially Allen. :) They stayed for the night and were able to be here when Benji came back from removing his tubes and Cory and Benji played game cube until it was time for them to go.

Saturday evening, Benji was able to get off the mask and began using the nasal canula again. A nasal canula is clear plastic tubing with a small nose piece which you typically see on people needing oxygen. Most of the time between then and when his chest tubes were removed on Monday morning he was on approximately 2 liters of oxygen. Most of the day yesterday, he was on 1 to 1 ½ liters and this morning he’s been on “room air”!! He looks amazingly better today!

And even more good news!... The Drs. say that as long as we can get Benji weaned from the pain medication and his treatments are back to normal, we’ll be able to go home on Friday! Yippee!!!! The way it looks now, we’ll be coming home this week.

Even though Allen and the boys couldn’t be here over the weekend, we weren’t alone. My brother Jerry and his family came down on Friday evening, stayed in Indy for the night then came back to see us a couple hours on Saturday. Grace Bontrager also stopped by Saturday. Sunday Uncle Sylvan and Aunt Connie were here again.

Today my brother Steve and his son Landon came down, Steve often comes down here to the car auction and today Benji got to have Landon stay with him for about 8 hours while dad went to the auction. They had a lot of fun together and Landon even got to have his picture taken with the Colt’s Super Bowl trophy and wearing a Colt’s Super Bowl ring! They had this on display down in the atrium and since Benji couldn’t go down, I was glad Landon (whose bedroom is decorated with Colt’s stuff) could be here to appreciate it.

Hope to see many of you at home in the coming weeks!

Until next time…

Thursday, July 12, 2007 10:14 PM CDT

Yippee!! Benji has been able to get rid of one of those tubes!! And thankfully it was the worst one!! Yesterday morning Benji was able to get out of bed, with assistance, to use the commode. Thus we got to remove that catheter! Sadly, I was proven wrong and Benji was disappointed again because according to him, it really burned when the catheter was removed. I’ve never had to have a catheter so I hadn’t spoken from experience; maybe some of you out there would have a more educated idea of how painful it actually is. I had only told Benji what I had been told but I have decided I will no longer tell him that something won’t hurt him because no matter how much it's not “supposed” to hurt, I can never know for sure how he will experience it. All in all though, as Martha Stewart would say, “It’s a good thing!” : ) One less tube to keep track of!

As I said, Benji got up with assistance yesterday and by today was moving quite well on his own. He was able to get onto the commode by himself all day today. We’re all very pleased with the progress he’s made the last couple days. Each treatment he’s been receiving since yesterday has been gradually intensifying. The percussion treatments he receives right now are with a G5. I believe it’s basically just a vibrator. It reminds me of one of those portable vibrators, with the large round heads, that we use on our backs. With this machine the therapist can be more precise about the areas being vibrated and can also adjust the strength of the vibration.

This afternoon the surgeons came into the room to say that as long as things continue to progress we’ll be able to take out the chest tubes on Monday. That will obviously be an improvement but it sounds like the Pulmonologists will than want to make sure his PFT’s are back up before going home. Again, it’s pretty difficult to predict when we’ll get to be coming home.

We had some other good news yesterday. As long as the St. Louis Drs. approve of the plan, which it is expected they will, Benji will get to stop his 5 antibiotic cocktail next week and continue with only one oral antibiotic and possibly the nebulized antibiotic. That means no more 24/7 IV! This means Benji can go swimming this summer and doesn’t have to carry the cumbersome IV pump around with him all day! The second atypical mycobacterium, which had been found in Benji’s sputum a year ago, has not shown up in the last 3 cultures so they believe they’ve been able to get rid of it. This bacterium was primarily what the other antibiotics were targeting. The Dr. may want to start him on another cocktail nearer to time of transplant.

Again, it’s really difficult to know what St. Louis will have to say regarding when to do transplant. This pleurodesis may extend the time we can wait to do transplant but we won’t know until we have our checkup in St. Louis on August 6. Benji now is pretty adamant about wanting to do it this fall so he can be home in time to play Upwards Basketball by January. : ( I don't think the chances are very great of him being able to do that by January, even if the transplant is done in September. It looks like we’ll have our work cut out for us if we need to convince him that it’s best to wait!

I can’t think of anything else for now so…thanks once again for your wonderful notes!

Until next time…

Monday, July 9, 2007 8:29 PM CDT

Good evening,

Benji is currently playing a game on Allen’s laptop, although he’s “under the influence” of a lot of medication and has to play with one hand since he’s got an IV in his other hand. This IV is one of the things Benji was not too happy about when waking up from his surgery.

The surgery took about 2 hours and was done with 3 small incisions and a scope, similar to laparoscopic surgery. After collapsing his right lung they did a search all around his lung and found a cluster of 5 blebs on the right side. Blebs are air pockets in the lining of the lung and the Dr. described these as looking like bubble wrap except they’re pink instead of clear. I believe they cut those out before stapling them shut.

They also “roughed up” the pleura. The Dr. described this as taking a small, sterile, “brillo pad” and rubbing the smooth surface of the pleural lining of both the chest cavity and the lung. (see above diagram) The purpose is to get the lung to actually adhere to the chest cavity and create scar tissue. The purpose for this is to help prevent more pneumos and make it more difficult for the lung to collapse. The fact that the lung is now attached to the chest cavity will make a lung transplant a little more difficult which is why the St. Louis Drs. were a bit hesitant about doing the procedure.

Benji woke up with 2 chest tubes, both on the same side; an IV in his arm; some type of things around his legs which periodically inflate to keep the blood in his legs circulating; and a catheter. On top of this were the typical oxygen mask and the leads, probes and wires to keep track of his heart rate, respirations and oxygen.

While Benji did make it through his surgery, he woke up quite weepy and emotional. We had told him as much about the operation as we knew but didn’t tell him about a couple of things that we weren’t aware of. One of those things was the catheter! As soon as he became aware enough to realize something felt funny “down there” he asked us about it and became quite emotional when we discovered what it was. I think the idea was the worst part of it. I reminded him that he’s lucky because it was placed while he was sleeping and he didn’t need to feel it. I don’t think that was much consolation for him. : ) When I told him it wouldn’t hurt when its’ taken out he said through his tears, “I don’t believe you.” That was a difficult thing to hear but there have just been too many times that he has been told something wouldn’t hurt that did hurt and he simply no longer believes it. The purpose for the catheter was that it’s just too painful to get up to go to the bathroom so he’ll use this until he can move around a bit better.

The second thing that was a surprise to him was that he had an IV. Those of us who have had IVs know that there’s often a stinging feeling that accompanies it besides the fact that it makes game cube impossible to play. : ) The purpose for the IV was so his pain medication can continually run through it; one of the antibiotics that Benji takes through his port is incompatible with the pain medication so they can’t run them through the same tubing at the same time. Previously they were turning off the pain medication during the time the antibiotic was infusing. The IV will probably be left in for the next couple days until he’s feeling better and needing less pain medication.

Now it’s just a waiting game again while he heals and until we and the Drs. feel ok about taking him home. Length of time, who knows! My best guess is that we’ll be here at least until the end of next week but that’s just a guess. I’d never have guessed that when we came down, expecting this to be one of his shorter stays that it would turn out to be his longest.

I was glad to have Allen stay last night and be here with us this morning; I know it felt good to both Benji and Allen as well that he could be here. Allen has decided to stay yet tonight before going back tomorrow.

Thanks again to all of you for the notes, cards and emails; they mean so much!!!!!

Until next time…

Friday, July 6, 2007 3:40 PM CDT

Hello all,

SHORT VERSION:
Benji has had a few complications this week which require him to be on a face mask and a lot more oxygen but otherwise doing fairly well. At this time he will probably be having a surgical procedure done on Monday, called a pleurodesis.

FOR THOSE OF YOU WHO’D LIKE A “FEW” MORE DETAILS:
It’s hard to believe this is Friday already; the past week has just flown by! Often when we’re down here we’re by ourselves most of the time except for weekends. There are even times that we’re alone over the weekend. This time however, we’ve been blessed with seeing many different faces. Today is the first day in 10 days that we haven’t had company and only the second day in over 2 weeks.

Beginning Friday, June 20: Allen and Cory
Saturday: Conrad and Deb Brenneman and 2 sons
Sunday: Syvan and Connie Eash and Christian and Elise Ramirez
Monday: Corine Troyer and 3 daughters
Wednesday: Grandma and Grandpa Troyer and Dale; Norm Miller
Thursday - Friday: Allen and all 3 boys
Saturday: Cory was here until noon when Grandma Troyer and Jasmine Troyer came to pick him up.
Sunday: Gary & Ruth Schrock, Jr. & Carol Miller, Merv, Marilyn & Josh Mullet , and Allen & Cory.
Monday: Jason & Rose Yoder and 4 children
Tuesday: Jason & Rose and family again; Phil, Denise & Makayla Bontrager and Reygan Troyer; Steve & Landon Troyer
Wednesday: Allen & Cory; Sylvan & Connie Eash; Mommy & Dawdy Eash
Thursday: Allen and Cory were here until around 5:00pm
Allen and Cory will be coming back down tomorrow and bring Tyler and possibly Aaron along.

As far as Benji’s condition is concerned, there are some things to update. On Monday evening Benji developed a pocket of air under his skin. It is believed this resulted from a kink in the chest tube; the air from the pneumo wasn’t able to get through so it found its’ way around the tube, through the hole (the hole that was made for the tube to go through) and into the area between his chest cavity and his skin. While this in itself is not a great concern and it eventually absorbs back into the body, it is a symptom of some kind of problem. So, Monday evening, Monday night and Tuesday morning were a flurry of chest x-rays and all kinds of residents coming in and out of the room. Since then we’ve also had many different people coming into the room to “feel” the pocket or “crepitus,” as they call it; I guess it’s quite uncommon here as one of the nurses told me, “we learn all about this in school but I’ve never actually seen one.”

On Tuesday, they did a bedside procedure where they pulled Benji’s chest tube out about an inch and a half in an attempt to undo the kink. After another chest x-ray they said that the kink was better but still had a bit of a curl at the end. Most likely they’ll put in a new tube next week when they do a pleurodesis. (I’ll tell you a little more about this later.)

On Wednesday morning we had another scare. Benji had been on about 2 liters of oxygen most of the time since the chest tube was put in but he suddenly began to “desat” (short for desaturation: when the amount of oxygen in the blood is decreasing) After needing to take him up to over 4 liters of oxygen, which typically means a move to ICU, he was put on another oxygen machine which dispenses through a face mask. Benji had actually asked for the face mask as well, because he felt like he couldn’t breathe. He started on that at 45 percent (which I believe is approximately equivalent to 9-10 liters).

After another flurry of doctors and chest x-rays to help determine what was going on, we were all relieved to see that the pneumo was not any larger. The doctors however, thought that he may be developing more mucous plugs in his lungs because he’d not had any percussion treatments since last Friday. They like to hold off on those for a while after a pneumo because of the risk of causing another pneumo but the doctors decided it was a greater risk at this point to not do treatments. They came up with a plan to increase his pain medication so he wouldn’t be afraid to cough and to begin the percussion treatments again, every four hours instead of 4 times a day. (This means waking us up at least twice during the night to do his treatment.) As of now, his pain seems to be under control and while he’s still on 40 percent oxygen (approximately equal to 9 liters) he seems to be feeling more like himself.

Regarding St. Louis, the doctors here have been in contact with the doctors in St. Louis and as of now the plan is to do a pleurodesis next Monday. A pleurodesis is a surgical procedure in which they “rough up” the area surrounding the hole in the lung to allow it to heal more easily. The surgeons here will be speaking to the St. Louis docs to determine how they want that done. My guess is we’re looking at being here at least a couple more weeks.

We've received ecards, emails and snail mail from quite a few of you and we want to thank you all as well as those of you who have left notes in the guestbook. We want to let all of you know how much we appreciate each one!

Thanks for checking in on us.
Until next time...

Cindy

Saturday, June 30, 2007 12:30 AM CDT

A quick update:

After nearly 3 weeks here at Riley, we were looking forward to going home this morning but last evening Benji developed another pneumo. This morning around 6:30 he had another chest tube put in. We have been in ICU since last evening but hope to return to 3A by tonight. Because of Benji's extreme discomfort, we had a miserable night, but since getting the chest tube he can breathe again and with pain medication is sleeping comfortably.

I will try to update with more details this evening but right now I need to try to get some sleep while Benji is sleeping. I didn’t sleep at all last night.

Cindy

Hi all,

As stated above, we had been planning to go home this morning but had a sudden change of plans. Allen and the boys came down Thursday noon and spent the night with us. They needed to leave shortly after noon so Aaron could be back for a class party but before they left Benji had his PFT and since he managed to get a 40 percent they decided they’d let him go home with a return checkup next Friday. It usually takes a while by the time the doctors get everything together for discharge and it often gets pretty late by the time we get home so we decided to pack up Friday afternoon and evening and take off for home Saturday morning.

Tonight Allen and the boys, other family and our small group along with some others are at the air show at home. Since that’s always a lot of fun for the kids, we purposely didn’t tell Benji about it so he wouldn’t be so disappointed. However, when we discovered we’d be able to go home this morning the boys right away told him about it and it was decided, since we’d be home in time for the air show, Cory would stay down and ride home with us this morning.

Last evening, around 9:00, after having packed up a bunch of stuff and just having taken it out to the truck, Benji began crying and complaining of his chest hurting. He said it felt like it had last time he had a pneumo. At the same time his oxygen levels started to drop and so of course, a chest x-ray was immediately ordered. He was correct, he had another pneumo. It started out fairly small so the doctors decided to move him to ICU and see if they could keep him comfortable while allowing the pneumo to resolve on its’ own. This was amazing to me, considering the fiasco we had last January attempting to get his pneumo to heal. I couldn’t imagine there was any way it would resolve on its’ own!!

Benji could most likely have had a much more comfortable night if the doctors that were here (who didn’t know Benji) had at least read his history before 4:00AM when they called me out to tell me what their plan was. (They had actually made a plan without checking his history!!) Maybe someone reading this could shed some light on why that would happen; it’s a little disconcerting and it would really be helpful to understand why that wasn’t the first thing they did. All they had to do was push a couple buttons on the computer and right there was all the information they needed regarding his last episode. (I had briefly referred to it the night before and the nurse also told me she’d given them a quite a bit of his history, regarding how difficult it had been to resolve the last pneumo.)

Anyway, to make a long story a bit shorter, after asking the doctors some questions to help me understand exactly what they were planning to do and telling them what had happened last time, they decided to pull up his history on the computer (that was standing right beside us) and as soon as they read the history decided that they didn’t want to follow this plan after all but instead wanted to go ahead and let surgery take over, just as they had last time. This then took another couple more hours to prepare so it was around 6:30 before he finally got taken to surgery.

All this time Benji was pretty miserable; soon after being transferred to ICU his pain increased and at times he was on as much as 4 liters of oxygen, his breathing was very labored. It was 2:00 before we got settled down and soon after that he really wanted to sleep but had a very difficult time of it since he was sitting straight up in bed to stay as comfortable as possible (laying down was painful) and struggling to breathe at the same time. As much as he hated his last chest tube, he was actually looking forward to getting the chest tube this time so he could breathe again. The second chest x-ray that was done around 3:30AM showed the pneumo had become quite sizable.

When I discovered we’d be transferring to ICU I didn’t know what that meant for Cory. Being unfamiliar with ICU policies, we didn’t know if he’d be able to stay in the room with us or not. In fact, the policy is that only one parent or caregiver is allowed to sleep in the room with the patient but the ICU staff was very nice and despite being against policy, they brought another recliner chair into the room and allowed Cory to stay in the room with us. That took a great load off my shoulders because I really wasn’t sure what I was going to do if he couldn’t have been with us.

Amazingly, after Cory finally got to sleep around 2:00, he slept through everything. I, on the other hand, couldn’t relax with Benji in the condition he was in and didn’t sleep at all. Benji got probably about an hour and a half of very fitful sleep, while sitting up, and I finally got to sleep for a couple hours around 9:00 this morning, once Benji was back in the room and resting comfortably. Fortunately, he was well medicated today and slept a lot of the day; I got another couple hours of sleep this afternoon.

I was very proud of Cory; Benji was in crisis and being in ICU was totally different from what he was used to on 3A. I had left Cory in the room on 3A while we transferred Benji to ICU and went back after him when I received permission to have him in the room with us. While we were on our way to ICU I tried to help him understand, as well as I could, what would be expected from him and how he needed to act in ICU. He really did a good job and didn’t need to be told when he needed to step back and be extra sensitive during the times Benji was struggling more.

My mom and my niece, Jasmine drove down this morning to pick up Cory and be back in time for the air show. One of my first questions to Allen, when I called to tell him the situation, was about how Cory was going to get home. Being home for the air show was VERY important to him and I would have hated it for him if he hadn’t been able to. Of course that was one of Cory’s first questions for me as well and I was glad to be able to tell him Dad had said someone would come down to get him. Thanks mom for doing that!

One of the bigger stresses we dealt with last night was the thought of needing to transfer to St. Louis. When we had been to St. Louis for a checkup in February, they had told us that if he developed another pneumo we were to get him stabilized as much as possible (most likely with a chest tube) then be transferred to St. Louis where their surgeons would perform some type of procedure to sew up the hole along with the other “blebs” they expected to find in the same vicinity. So, when we found out last night that Benji had another pneumo, our expectation was that we’d need to transfer to St. Louis within the next few days.

Benji was quite emotionally upset through the night, more than we typically see. I think the disappointment of not being able to go home and the thought of needing to transfer to a strange hospital on top of lack of sleep and the struggle to breathe was just too much for him. He’s been much better today. Throughout the night whenever “chest tube” came up Benji would start to cry. Once when I asked him what it was about the chest tube that bothered him the most he said, “I don’t want to go to St. Louis.” That was the first I was aware that it was weighing so heavily on him. When I had the time to really let everything soak in and think through the situation, I was amazed how heavily it was weighing on me as well. Being alone here at Riley has become quite routine and I usually feel strong enough to handle things without Allen here, but last night I really could have used his strength! I certainly wanted him along when we transferred to St. Louis; it was more than I wanted to face alone.
Needless to say, we were delighted when St. Louis called this morning and said that as long as the pneumo can again be resolved here with the chest tube, we won’t need to go at all! Of course if it doesn’t resolve, we may still need to go, but for right now, we are so excited about going back up to 3A for the next couple weeks or so!

We weren’t able to get back up to 3A yet but as of now, it looks like we’ll be able to move back up tomorrow morning. Fortunately they’ve been able to hang on to our room and we didn’t have to move everything out of it. This evening I went out to the truck to bring the stuff back in that I’d packed up last night and got the room set up again for tomorrow morning.

I’m beginning to fall asleep so I’ll need to go. Benji is playing game cube right now and feeling pretty decent as long as he’s got his pain medication.

Thanks for checking in!

Until next time…

Monday, June 25, 2007 12:07 AM CDT

Hello all,

It’s time to update you on Benji. Whenever Benji is in the hospital for a tune-up, it’s always a little more difficult to update the webpage regularly since there is very little change from day to day and even week to week. The main things that change are his PFT’s which typically rise, a little at a time. The PFT’s also play a big part in determining when we go home but it mostly just a “waiting game” while his PFT’s climb back up to the point the doctors feel is the best he can do.

While Benji is on Cefoxitin, an IV antibiotic at home 24-7, it is specifically to fight the atypical mycobacterium, when he’s admitted they switch that to Meropenem. This antibiotic covers a much broader range of bacteria which are typical in a cystic’s lungs. The biggest struggle with this antibiotic is that it tends to make him nauseous so he also needs to take Zofran, an anti nausea medication. Probably just as important, the hospital gives Benji a chance to catch up a little, since he’s not very active while here.

As I had said in my last update, his first PFT was a 31 percent; last Monday he had a 36 percent so he’s heading in the right direction. Friday would have been the day to do another PFT but, due to more frequent vomiting, the Doctor felt it would be better if he didn’t do it that day. (PFT’s often cause Benji to have coughing fits which typically result in vomiting.)

Benji is scheduled to do another PFT this afternoon; my expectation is that if today’s is in the low to mid 40’s, they’ll want to do another one the end of the week and if it’s maintained, we’ll get to come home by the weekend. However, I just never know!

I’ll update this entry after we get the results of his PFT’s this afternoon.

Thanks for checking in.

Until next time…

Update on PFT: I was disappointed with Benji's PFTs; I expected them to be at least in the low 40s but the highest he could get was a 38 percent. It's difficult to know what that means but it wouldn't surprise me if we didn't go home until the first of next week. Our primary doctor has been on vacation and we won't see here for a couple more days. She might be able to get a better idea after talking to her.

Thursday, June 14, 2007 12:16 AM CDT

We are back at Riley after a blessed four months at home. We had brought Benji down for a checkup the end of May and he actually got a 48 percent PFT! However, a couple days later he began showing some signs of having some type of “bug” or something. It began with a sore throat and followed with daily low-grade fevers, decreased oxygen, more frequent cough and coughing fits, loss of energy, etc. So, Monday he was admitted again for what is called a “tune-up.” (A tune-up is a period of time in the hospital for increased IV medications and closer observation and testing. A typical tune-up is usually 2 to 3 weeks long.) Benji is feeling pretty well though he’s back on daytime oxygen and has been sleeping a lot more.

We had to start out on a different unit this time since there were no beds available on our regular unit, 3A. We spent the first 2 nights on 2A and moved up here to 3A yesterday. It’s not that the staff on other units isn’t just as good or anything it’s just nice to be somewhere where everything’s familiar and we know everyone and they know us.

When Benji did his PFT’s on Tuesday, I misread the results and was surprised to see he had a 41 percent; this is not a bad PFT for Benji but is 7 percentage points less than just a few weeks ago. It was a bit confusing since it didn’t match the symptoms he was having. I told Allen last night that I was pretty sure we wouldn’t need to be here more than 2 weeks since he was starting out with such a good PFT.

However, this morning when the Doctor came in he said he looked at the results and Benji had a 31 percent instead of 41 percent! That’s quite a difference and it does make more sense, considering his symptoms. It also changes the outlook for length of stay. Now, it wouldn’t surprise me if we have to stay longer than 2 weeks, maybe closer to 3 weeks. We’ll just need to see how quickly he improves.

It’s funny how our perspectives change with our experiences; when I tell someone that I expect this to just be a routine visit and that we’ll probably only need to be here 2 weeks, their response is often, “only!!!” A 2 to 3 week stay in the hospital doesn’t seem that long to us anymore.

I had a new experience yesterday, while we were still on 2A, a chaplain stopped in to see us and said he was with the chaplaincy program here at Riley. I thought I knew most of the “ins-and-outs” here at Riley but was surprised by this. He said each unit has a chaplain or two assigned to it so I’m not sure why we’ve been missed but I could not recall ever having been visited by a chaplain at Riley. The more I thought about it though, I do think that one may have stopped by when we were here the first time for 5 weeks, in 2004, but not since then.

This chaplain was from Nigeria so, due to his accent, I had to ask him to repeat himself more often than I cared to but I really enjoyed visiting with him. (Benji was sleeping during the time he was in the room, so he missed him.) The chaplain’s name was Iduw, (I think that’s the correct spelling, pronounced eedoo) and it was interesting to learn that in the part of Nigeria he’s from all children born after a set of twins is named Iduw. All twins are also named alike; the first born has one name, which means “first born,” and the second born has a different name, which means “second born.”

He asked me what church we’re affiliated with and when I told him Mennonite, he said one of his seminary professors was Mennonite and he knew, or had met, a couple other Africans who were Mennonite. (I had to wonder if any of them were here through RMM.) I was really blessed by his prayer for us before he left.

Tomorrow night and Saturday there is a school board retreat which Allen would like me to be able to go to, so tomorrow morning Allen will be bringing Tyler down here to stay with Benji and I’ll be going back home with him. We’ll go to the board retreat then on Saturday we’ll pick up Cory and come back down. We’ll all sleep in Benji’s room for the night before Allen the boys head home on Sunday.

Thanks for checking in, I think that’s all for now.

Until next time...

Sunday, May 7, 2007 1:26 PM CDT

Hi all,

Wow! Who’d have ever guessed that we’d be home 3 months!!!??? The doctors, and as a result, us, never expected Benji to go this long without needing hospitalization! At his last checkup, 2 weeks ago, one of his doctors said Benji’s lungs sounded better than he’s heard them sound for a long time. Yah!

It feels so good to be catching up with things around home and getting things done that should have been done a year ago! Last summer I was barely able to work in my flowerbeds and as a result, they got a little out-of-hand! This past week I really enjoyed being able to begin whipping those back into shape. : )

A couple months ago Allen had asked me about the possibility of he and/or I being able to go along to Florida, as sponsors, with our high school choir. This is where they, so reluctantly and with much suffering, : ) went to on tour this year. Our oldest son Aaron is on the choir. We just couldn’t commit ourselves to something like that not knowing what to expect with Benji. However, after coming home with such a good report after Benji’s last checkup, Allen (my kind and loving husband) again asked if I’d be interested in flying down to Sarasota on a Monday and riding back with the choir the following Friday, as a sponsor. The one sponsor couple needed to fly from Sarasota to Chicago for their son’s graduation from college and they needed another sponsor or two to ride along back.

Allen’s idea was for me to go down earlier in the week to give me several days to just get away and relax a bit before coming back with the choir. (what a sweetie!) I flew into Tampa on Monday evening and drove down to Sarasota on Tuesday afternoon, just in time to shower and get to the choir program that evening. Aaron, myself and my nephew Mike Troyer stayed with my aunt and uncle, Wayne and Fran Miller for the next few days and while I was with the group off-and-on during the next few days, I did some things on my own as well, since I wasn’t officially a sponsor until Friday morning.

The weather was gorgeous and I had a nice time but like most vacations, wasn’t nearly long enough. I wasn’t too sure about riding back with a whole bunch of teenagers but in those 3 days I learned to respect our high school kids in a whole new way! They’re a great bunch of kids and I could have spent a lot longer time with them and really enjoyed it!

Benji has really been enjoying being home as well. He got to play in the snow some, since we’ve had some pretty good amounts since we were home. He’s also enjoyed playing outside in this beautiful spring weather; this week he’s been out riding go-kart and having a blast! To his disappointment, he won't be able to play little league baseball this year. The fannypack he continually wears (which carries his IV pump) along with the fact that he runs out of breath so quickly, makes it nearly impossible for him to run the bases. So...he's taken it pretty well, as usual, and has contented himself with watching his brother Cory play.

We’re really adjusting quite well to this "being home all the time" however, by the time the first 6 weeks at home rolled around, I was sure missing the interaction and friendships with the people from Indy! We did run up to say “hi” at our checkup but we don’t get to see most of them when we just “pop in” for a little.

So, to all you Indy folks:
"Hi all of you, we miss you! Thanks so much for all your notes; I always love telling Benji that "so-and-so" left him a note and says, whatever each of you said." : )

At this time, the plan is still to do the transplant this fall, however, I’m not sure if the fact that Benji seems to be doing fairly well will change that or not. Benji is now so on board with us regarding transplant that he jokingly asked the other day if should “fake it” if they say he’s doing too well to not do the transplant this year after all. ; )

Thanks again for taking the time to check in with us.

Until next time…

Friday, March 9, 2007 4:21 PM CST

Hello Everyone,

I wanted to update everyone with what has been happening in our lives for the past 3-4 weeks. We have been able to spend 5 weeks at home! Praise the Lord!! Benji is doing quite well under the circumstances. We seem to always be on pins and needles not sure when we need to pack up quick and go for Indy or St. Louis. Wednesday PM he vomited as he often does but this particular time had a fair amount of blood with it. This is always a concern because it could be a burst blood vessel or something much worse. We always watch for the next time he vomits and if he has more the second time we also would need to head south ASAP. Fortunately he was OK from there on. It seems to be a constant reminder that we cannot plan for tomorrow but only for today. This seems manageable for us for the most part but often we really feel disconnected with people from church and community because of it.
Benji has been going to school three days a week and only goes for about 4-5 hours per day. He needs as much rest as we can give him to stay as healthy as possible. He enjoys reading a lot and playing with his brothers. He has warmed up to the idea that he will probably have a transplant and has even decided he would like to have this done by Fall so he can play Upwards basketball next winter! We hope that can be reality!
Continue to pray for Benji and us as we prepare for the coming months. Thanks for your support.
Until next time………Allen

Thursday, February 15, 2007 7:29 AM CST

Hello everyone,

Last Monday was Benji’s checkup in St. Louis; this time we only took Benji and Tyler. Allen and I were anxious to hear what they would have to say once they saw Benji. Fortunately, our appointment ended early enough on Monday afternoon that we decided to still drive home Monday. We were especially glad once we saw the weather on Tuesday; it sure wouldn’t have been very fun driving home in all that snow and wind!

The doctor was actually pleasantly surprised and encouraged when he saw Benji. At the time they had last seen Benji in June, he had just begun using some different enzymes and a new feeding tube formula because he’d been losing weight over the previous several months. It was obviously a good move since Benji has gained 16 lb. since last June; the doctor was delighted with the weight-gain.

The doctor was also happy with Benji’s PFT. Benji had a 40 percent, which surprised us all; it was better than we’d expected. The last one he had one was just before Christmas and he only got a 36 percent. He hasn’t done one since, for fear that the pressure would put another hole in his lung.

The plan has changed just slightly though. We still intend to keep Benji well enough so we can wait until fall to do the transplant; the slight plan change comes in regard to him needing to do an immediate transplant if he develops another pneumo. It seems that there is another procedure, that the surgeons from St. Louis feel they can do, that could possibly be a temporary fix for Benji’s pneumo problems. They feel they could do this, without putting him at risk, for a transplant later. They would however want him to come to St. Louis for that procedure.

Another reason Dr. Faro (from St. Louis) was encouraged was that a few weeks prior, due to the problems Benji was having resolving his pneumo, he had not expected Benji to heal and, as a result, fully expected that Benji would need to be transferred to St. Louis for transplant now. He was glad to see that Benji had been able to recover from the pneumo and that there is a good possibility that he will be able to make it until fall to do the transplant. PTL!!!!

St. Louis wants us to come back for another checkup in May, if Benji continues to need frequent hospitalization over the next few months. However, if he manages to stay out of the hospital, they don’t need to see him again until August.

Our next checkup at Riley is next Wednesday, February 21.

Thanks again everyone, for checking in on us,

Until next time…

Tuesday, February 6, 2007 8:40 PM CST

Hello all,

The following is the short version for those of you who just want a quick update; there is a much longer, detailed version under that one for those of you who like those details. : )

SHORT VERSION:
Well, we came home again last evening, 2 days short of a 5-week admission

Due to developments over the last couple of weeks and talking to the Doctors regarding risks for another pneumo, we are going to need to postpone our Make-a-Wish Disney cruise and trip to Disney World.

Next Monday, February 12, is Benji’s next checkup in St. Louis. We will be leaving on Sunday and coming back on Tuesday.

LONGER VERSION:
Well, we came home again last evening, 2 days short of a 5-week admission. It was so great to sleep in my own bed again! The doctors seem to feel that Benji’s pneumo has, what they call, resolved and his chest x-rays over the last week have looked really good. PTL!! It’s a little scary bringing him home, Benji now has two potentially life-threatening problems (if not caught soon enough) that Allen and I need to be constantly alert for, the pneumo and the blood clot in his heart. Both of them present with similar symptoms like sudden shortness of breath, chest pain, labored breathing, decreased oxygen levels, flared nostrils, etc.

Due to developments over the last couple of weeks and talking to the Doctors regarding risks for another pneumo, we are going to need to postpone our Make-a-Wish Disney cruise and trip to Disney World.:( That was only 6 weeks away and we were all looking forward to it, very much, so it’s a big disappointment to us all!!!

Even though the docs said they rarely see pneumos in young cystics (only about 1 every three to four years) they also said that since he had this one he is at extremely high risk for a reoccurrence. One of the things that could really put him at risk possibly even be fatal, is commercial flying. Despite the attempt to reduce decompression in airplanes, it still happens to some degree. Decompression causes lungs to expand and obviously, that is not a good thing for Benji at this time; therefore, no more flying for Benji before transplant.

Secondly, we would have been leaving the US and we decided it would not be a good thing if Benji would redevelop a pneumo while we were in Nassau or somewhere like that. (It really doesn’t even feel very safe to be anywhere far from Riley or St. Louis at this time!) Thirdly, even some of the rides at Disney could be a problem for reoccurrence and it’s just not worth the risk!

A couple weeks ago, I received a call from the Transplant coordinator in St. Louis, which kind of put us in a tailspin! The fact that it was so difficult to get this pneumo resolved and conventional treatment could not be used brought the issue of a future transplant into the now or "near-now"! (Conventional methods were not, nor can they be, an option because they would cause greater risk for transplant in the future) If Benji’s pneumo had not resolved by this week, Riley would have transferred him to St. Louis for relocation; meaning Benji and I would have moved to St. Louis to do the transplant as soon as one was available.

Fortunately, this pneumo seems to have resolved! The plan now is to continue with the 5-antibiotic cocktail until August, when the year for taking them is up and then do the transplant, as long as the pneumo does not reoccur. If between now and then it does reoccur, we would go to Riley, where Benji would most likely get another chest tube then they would transfer him to St. Louis for transplant. There was a period of time that we felt there was a good possibility Benji and I wouldn’t even get to come home before moving to St. Louis since his pneumo didn’t seem to be resolving. We are so grateful to have been able to come home first, even if it doesn’t end up being for very long!

The deciding factors for anyone going ahead with the transplant are twofold: 1) PFT’s in the 20’s and low 30’s 2) Poor quality of life and frequent hospitalizations. Benji’s PFT’s had still been relatively good though he hasn’t done one since right before Christmas. We’re not sure when they’ll have him try again but it won’t be for a little while since that could also bring on another pneumo; consequently, we really don’t know what his actual lung function is.

The “poor quality of life” and frequent hospitalizations is the reason they decided to go ahead with Benji's transplant sooner than expected along with the concern of future pneumos creating a greater risk for transplant. The preference, however, is to wait till he has completed a full year dose of his antibiotic cocktail in an attempt to, as much as possible, get rid of both of the atypical mycobacterium he has in his system. These bacteria could also be a potential problem after transplant so of course, the less there is of it at time of transplant, the better!

Initially, when being told all this, I could actually feel a knot forming in my stomach! I suppose because the unknown is so frightening but it was, and is, also hard to accept that we are so near the “last resort.” (We have often discussed with the doctors that transplantation is only done – “as a last resort.”.) However, I was very encouraged to hear the stories of the recent Riley patients who had transplants! There is a 16-year-old cystic who had a transplant a year ago last Thanksgiving and is doing wonderfully! He has not needed one hospitalization since his initial release from St. Louis. WOW! How would that be?!

The second kid is Benji’s age and only had his transplant about 4 months ago; he is also doing beautifully. He had been very sick; I was told by a nurse that she had not expected him to be able to live another month previous to his transplant but when he came up to see the nurses a couple weeks ago, they barely recognized him. I was told he grew four inches since his transplantation!!! When we hear stories like those, we are so encouraged and hopeful for Benji’s future as well!

One of the concerns we had about transplantation is whether Benji’s name would get to the top of the list in time and it was one of the first things I thought of when told about the possibility of transplantation so soon. It was so exciting to hear that there has already been a couple times that St. Louis has been offered lungs for Benji, which they obviously had to turn down. They said they don’t expect it to be too difficult for him to get a lung in time since he is currently the only person in his category waiting for a lung!

Figuring there was a good chance Benji would need to be going to St. Louis in the following week or so, I knew I’d soon need to be having that serious conversation with him that I would have preferred to never have. Benji has always been adamant that he does NOT want to have a transplant, but we have always felt that once he actually has to struggle to breath on his own and is “sick enough” to need the transplant, he’ll be ready for it. Well, this pneumo thing had really messed up that plan! He was most likely not going to feel “sick enough” nor was he going to be struggling for breath when the time came for transplant. (His oxygen levels have actually been quite good the last week.)

The opportunity for the conversation came the day after I heard that he would most likely be having the transplant yet this year and possibly even, quite soon. When Benji made a comment that he wanted to play Upwards basketball next year, I jumped in and suggested that he might have to wait to do that until after he has a transplant since it would be pretty difficult for him to run up and down the court with this IV hanging on his waist! Plus, he can’t even walk very far without getting out of breath! His immediate response was per usual, that he did NOT want to have a transplant! I then, hoping this might do the trick, told him the stories about the other two boys who were doing so much better since their lung transplantation, but his response to that was just as typical, “So, I still don’t want a transplant!”

Seeing that Benji was probably not going to be persuaded unless he really knew what the stakes were, I felt the time had come to be more direct with him. I sat beside him on his bed, took his hand in mine and asked quietly, “Benji, would you rather die or have a transplant?” He reacted a bit startled, sat back in his bed, looked up at me and with a “DUH” tone of voice said, “Have a transplant!” Seeing his reaction, I asked him if he’d not previously heard this, he answered “no.” I told him that this was the only reason why Dad and I wanted him to have the transplant. (It was actually a surprise to me that he hadn’t picked up on this, since we were aware that he most likely had heard at least bits of conversation about the seriousness of his condition and that this was a “last resort” option, but evidently, he hadn’t.

I then told him that it looked like it was coming down to these two choices. Even though he wasn’t really feeling so bad right now, his lung were so diseased that he they wouldn’t be able to keep him alive a lot longer and now, because of his pneumo risk, the transplant was going to need to be sooner than we had expected

I’d never known what reaction to expect from him, when and if this moment came, but I never expected him to handle it as well as he did! He sat quietly for a moment and after he had apparently digested the information he asked, disappointedly, “Does that mean we have to move to St. Louis for 6 months?” I answered that we may not need to now since his name was at the top of the list. (We will need to be there 3 months after surgery; whether or not we need to be there longer than that depends on how long it will take to get a lung. Then of course, it will be longer if there are any complications afterward.)

His second question was, “Will they put me to sleep?” Those seemed to be his only two concerns. After I had answered his questions, we talked a while longer. At the end of the conversation I asked him how he was feeling and he said, quite convincingly, “fine.” I told him that if he ever wanted to talk about it or if he had any questions or concerns I’d like him to let Allen or myself know because we didn’t want him to have to carry this alone. He nodded.

A couple times later that day and at bedtime, I asked him if he was ok and his answer was always yes. Since that conversation, when the topic of transplantation comes up, Benji no longer responds with his typical, “I don’t want to have a transplant,” comment and in fact, has joined in the discussion about it all. It really does seem like he’s not carrying a lot of anxiety about the whole thing, which is a tremendous blessing. It also feels good to know we’re all at the same place now, regarding transplantation.

Next Sunday, February 11, Allen and I are taking Benji, along with one of his brothers to St. Louis for another checkup. His appointment is on Monday (most of the day) so we’ll be coming back on Tuesday. I’m interested in knowing what they’ll have to say.

Thanks for all the cards both Benji and I received during this hospitalization along with all the notes in the guestbook. It’s always nice to know we’re not forgotten when we’re away from home for so long!

Continue to pray for us as we move into this next stage.

Until next time...

Tuesday, January 30, 2007 6:40 PM CST

Hello everyone,

I was drafted to write the update this evening. Benji had his tube clamped yesterday to see if he experiences any chest pains when there is no escape for any air in his chest. (This will indicate whether the hole is closed and healed or not) Not long after they clamped it he complained of chest pains so they unclamped it until this morning and then clamped it again. He hasn’t had any pains today. PTL!

This afternoon he started with a low grade temperature and a sore throat. Hopefully it won’t last long! We were able to see him via webcam today. He seemed to be in good spirits but said his throat hurt.

Cindy was able to come home on Friday until Sunday when she returned to Riley. Her Mom was kind enough to go stay with Benji Friday night and Saturday until I made it to Riley. (Thanks Mom!) I stayed until Monday afternoon and then returned home.

The plan for now is to wait for several days to see if any air accumulates in Benji’s chest or not. If it doesn’t there is a chance we can come home for a while to see if it stays that way. We will be going to St. Louis on February 12th to see them and get an update from them on the possible transplant. They have contacted us and said that Benji is at the top of the list so we are anxious to talk to them about that.

For now that is all I have to report. I know it is much more informative when Cindy updates. She seems to be much better with words than I am!:( Keep praying for us as we continue to go on one day at a time. God is faithful and he is good!!

Bye for now . . . .

Tuesday, January 30, 2007 6:40 PM CST

THE FOLLOWING IS THE ORIGINAL INTRODUCTION WE HAD ON THE WEBSITE, DETAILING WHAT BROUGHT US UP TO THE POINT OF NEEDING HOSPITALIZATION IN OCTOBER, 2004.

The actual journal entry from January 30th is under the introduction.

INTRODUCTION:
Benji was diagnosed with Cystic Fibrosis as an infant but had fortunately been able to stay quite healthy the first 6 years of his life. Benji is now, almost 7 years old and unfortunately, the past 7 months have been rather rough. In April, this year (2004) he was admitted to the hospital to have his first picline inserted into his arm. He only needed to be there 2 nights then we were able to take him home to finish out a 2-week course of antibiotics there. (A picline is a semi-permanent IV that allows us to inject his medications at home instead of needing to be in the hospital.) By the end of the two weeks, he was doing better and was taken off the antibiotics. Now however, looking back, it seems ever since that time he has not been quite as well as before. This is the first summer he has needed to have any antibiotics; he typically only needed some through part of the winter.
By the end of September, we could tell that Benji was not doing well, so when we took him to CF clinic on September 24 (something he goes to at least every 3 months). We were expecting to and were not surprised that he was admitted to have another picline inserted. This time however, Benji remained in the hospital 6 days due to a low-grade fever that puzzled his Dr. since his sputum tests did not seem to show anything major. After 24 hours without a temp, they sent him home. We finished out his 2-week course at home but this time he didn't seem to bounce back as he had before.

The Doctor then ordered a bronchoscopy: an outpatient procedure in which, after putting Benji to sleep, they go down through the nose and into his lungs to get a biopsy of his mucous. One week after the bronchoscopy, on October 22, two weeks after Benji had finished up his first round of antibiotics, he was again admitted to St. Joe Med Center in South Bend with a possible diagnosis of TB. His bronchoscopy had shown the presence of "acid fast bacilli" which can cause TB but can also cause a variety of other serious diseases. The medical staff seemed to assume he had TB and though TB is extremely rare, it was the most likely of all the other possibilities since they are even less common. We also figured the test results would be positive for TB since his symptoms so perfectly matched the symptoms of TB: high fever, sweats, constant fatigue, cough that won't go away, loss of appetite, weight loss, stomach cramps; he had them all.

Anyway, the Drs. began treating him for TB and he was put into isolation and on five different antibiotics plus a few other meds. You would think with all that medication he should have gotten better, but instead his health began declining, rather rapidly! His temperature chart looked like a row of huge W's; it was constantly up and down. Usually his temp would go below normal and he would start chilling; nothing could get him warm. Then after some time his temp would spike up to as high as 105! After he would come back down, he would go into sweats that would drench his sheets. After varied periods, the cycle would begin again. During his fevers, he was pretty lethargic and listless and complained of sore muscles and joints. His heart rate, which was typically around 130-145 bpm while resting, would go up during fever spikes. During his fevers his oxygen level would drop as well.

The longer we were there, the worse he got. His fever spikes increased, his heart rate climbed, his oxygen level declined, his appetite became "nil", he slept more of the time, his color worsened, his weight dropped (5 lbs. in 4 days, which caused him to become weaker and weaker, and his cough worsened to the point that it was difficult to have to hear it! It sounded like it was tearing up his chest and he would finish with a sort of crying-scream.

Finally, on Thursday, October 28, we got our test results, which turned out to be negative for TB but positive for what are called "rapid growers." We are now waiting on test results to find out exactly what kind of "rapid growers" he has. Hearing he didn't have TB brought mixed feelings: surprising relief at being taken out of isolation, we hadn't realized how much that had been weighing us down, and relief that he didn't have TB. However, at the same time, there was a sense of disappointment at not knowing what was wrong with Benji after all. In many ways, it was much easier to know what we were dealing with, even when it wasn't good, than to have all the questions about what was happening to him and if anything could be done about it.

After seeing the test results and conferring with the head of the cystic fibrosis department at Riley Children's Hospital, Dr. Harris, Benji's CF doctor, made an immediate med change and referred us to them. He told us that in his 18 years of dealing with "cystics”, he had never had to send anyone to Riley, but felt he didn't know what else to do with Benji. He said he, (Benji) had "a lot of weird junk" in his lungs, and he had never seen these bacterium, (rapid growers) in any of his patients. It was decided that we were to be transported by ambulance as early as possible, the next morning.

Even though at different times through that week we had had some very emotional and fearful feelings as well as questions to deal with, that last night in South Bend was the darkest and most hopeless. Benji's fever spiked to 105, which had happened before, but this time his heart rate also spiked to 199 bpm. His heart felt like it was going to beat out of his chest. The previous week had been a roller coaster ride of emotional ups and downs; sometimes we even rode that roller coaster a couple of times in one day, but that night we struggled with a real sense of fear for Benji as to whether or not anything could be done to help him! He spiked two to three more temps that night but not quite as high as the first nor did his heart rate go quite as high. It stayed closer to 170 bpm. The next morning, before leaving for Riley, we had an anointing service for Benji.

Since being at Riley, we are seeing a definite improvement in Benji though he is still a very sick boy! We don't have any more answers than we did, however, it feels very good to know we are in the best hands possible. The doctors here put him on a new regimen of antibiotics and some other meds; including some to lessen the possible side effects of some of the antibiotics. One of Benji's nurses said she figured Benji's med regimen was in the 90th percentile for amounts of medication being given in this hospital. I’m not certain of the exact number of meds he's on but I was told he's on eight different antibiotics. The idea is to cover a wide range of possible infections, while waiting for test results. As some of these are ruled out, certain ones can be removed. However, he will need to be on at least a couple for nine months to a year.

He's still spiking some temps, but they don't typically go as high and his heart rate seldom goes over 155 bpm. There are occasions when his oxygen level is good enough that he can go for short periods without any help. His cough has somewhat improved. It is still not good but it seems to have loosened up some and is not quite as gut wrenching. He is awake more of the time though he's still quite tired during a lot of that time. It seems he has a difficult time sleeping at times, even though he's very tired; we're guessing it's probably one of the side effects of his antibiotic cocktail. He’s also still quite weak and is in bed basically all the time; he hasn't had enough energy up till now to do much of anything, even though he's gotten some great gifts to keep him from getting bored during his hospital stay. His appetite has not improved much and we're still working to get some food and nutrition into him.

We also got stuck in isolation again although this time it's not as confining since he can have visitors. I believe the isolation is also as much for his benefit as anyone's; since his immune system seems to be quite suppressed; he's being protected from any new germs he could contract. On Saturday, he was put on restricted visitation, limited to two people at a time with visits no longer than 5 minutes. That seems to be about as much as he can handle most of the time right now.

We want to thank all of our family, church family, friends and neighbors who have been so supportive during this time. We are truly blessed! We want to thank you too for all your prayers and would ask that you continue to pray for us. In your prayers, please remember Benji's brothers as well: Aaron, Tyler and Cory. This is also a tough time for them with their little brother, sick and far away in the hospital. They also have to deal with disrupted schedules and a lot of questions and fears about the unknown.

We will attempt to update this website daily, certainly, whenever there is anything new to report.
We would love you to sign our guest book and leave a note for Benji or his family.

THE FOLLOWING IS THE JOURNAL ENTRY FOR JANUARY 30th, 2007.

Hello everyone,

I was drafted to write the update this evening. Benji had his tube clamped yesterday to see if he experiences any chest pains when there is no escape for any air in his chest. (This will indicate whether the hole is closed and healed or not) Not long after they clamped it he complained of chest pains so they unclamped it until this morning and then clamped it again. He hasn’t had any pains today. PTL!

This afternoon he started with a low grade temperature and a sore throat. Hopefully it won’t last long! We were able to see him via webcam today. He seemed to be in good spirits but said his throat hurt.

Cindy was able to come home on Friday until Sunday when she returned to Riley. Her Mom was kind enough to go stay with Benji Friday night and Saturday until I made it to Riley. (Thanks Mom!) I stayed until Monday afternoon and then returned home.

The plan for now is to wait for several days to see if any air accumulates in Benji’s chest or not. If it doesn’t there is a chance we can come home for a while to see if it stays that way. We will be going to St. Louis on February 12th to see them and get an update from them on the possible transplant. They have contacted us and said that Benji is at the top of the list so we are anxious to talk to them about that.

For now that is all I have to report. I know it is much more informative when Cindy updates. She seems to be much better with words than I am!:( Keep praying for us as we continue to go on one day at a time. God is faithful and he is good!!

Bye for now . . . .

Friday, January 19, 2007 7:15 PM CST

Good evening all,

I don’t know why it’s so difficult for me to get the website updated this time but it seems like I just keep putting it off. I decided I had to get this done before I go to bed tonight but I can hardly keep my eyes open so don’t be surprised if some things don’t make sense or words are misspelled. : ) I just checked his website and surprised myself to find that I hadn’t updated anything since he had his chest tube removed!

Yes, he did have it removed on Tuesday as planned but it was an unbelievable ordeal! Benji was petrified of having it removed and just went hysterical when it came time to remove it. He had been given quite a good dose of sedatives but he so badly wanted to be put to sleep (and I so badly wanted it for him!), but for safety reasons and because of the “risk-benefit ratio” was not able to. The sedatives didn’t even seem to phase him and it ended up being an extremely emotional ordeal with myself and 2 nurses holding him down so the Dr. could remove the tube while he fought and pleaded with us over… and over… and over… and over… to PLEEEEEEASE, NOT TAKE IT OUT! Once again, Mom buried her head in his hair and cried right along with him.

Fortunately, he didn’t even flinch when the tube was actually pulled so I don’t think he really felt much pain physically and after it was removed he quickly began to become more like himself both physically and emotionally and by the end of last week seemed like his old self again.

Most of you probably already know this but Benji had to have another emergency surgery last Monday night to have another chest tube put in.

We had some hint over the weekend that he may need to have another one put in, but then he seemed to sort of stabilize and about a half hour before Benji complained of his chest hurting on Monday night, I had told Allen that I thought he was doing pretty good and that I felt he was going to make it through without having to put another one in.

About 10:30 Monday evening Benji complained of chest pain again which he said felt like the same kind of pain he’d had before but not near as severe. The nurse immediately called the doctors and they came right down to check him out, ordered a chest x-ray and within an hour I was signing papers for him to have another surgery. We took him down to the O.R. around midnight Monday night, (and I haven’t seemed to be able to get back on a decent sleeping schedule ever since).

For the previous few days, since being told that there was more air in his chest cavity again, I had been dreading the thought of having to tell him he’d have to have another chest tube put in. Neither I nor the Drs. could believe how well he took the news! He suspected it after all the flurry in the room and he actually asked me, very calmly, (before I had a chance to sit down with him and tell him) if he was going to have to have another chest tube put in. His only response when I told him it looked like it was, “Are they going to put me to sleep like they did the last time?” After hearing that they were, he had no more concerns.

We decided, and it became his “pat” answer whenever he was asked about his feelings between that time and his surgery, that his philosophy was “as long as you put me to sleep, I don’t care what you do.”

Benji came through the surgery fine but while we previously had begun to feel like we were close to the top of the hill and just about ready to cruise down the other side, we’re now back at the bottom of the hill again, just starting our journey to reach the other side again. Once again he was quite “ouchy” the first couple days but, with the help of pain medications, has been moving around much better the last 24 hours.

For those of you who don’t understand the “chest tube thing”, which I didn’t either until I was able to see his x-rays last week, I’ll explain it as good as I can. The lungs are quite snugly encased within the ribcage which is also the chest cavity and on an x-ray you should not be able to see the outside of the lungs since they (the lungs) should expand all the way out to the chest cavity wall. I guess the chest cavity is an airtight space since if air from the lungs gets in there, it can’t escape anywhere.

So… if the lung is punctured or develops a spontaneous “pneumo” and air escapes into the chest cavity, it creates an air pocket between the outside of the lungs and the chest cavity wall which then does not allow the lungs to expand. (Pneumo is the medical term for the air pocket – which is caused by a hole or leak in the lung. It’s not possible to actually see the hole, the only way to know there’s a hole or how large it is, is by the amount of air in the chest cavity; which, through a chest x-ray, can be assessed, by how far away the exterior wall of the lungs are from the interior wall of the chest cavity.) I hope all this makes sense to you!

If that air pocket becomes large enough the only way to get rid of it is with some sort of surgical procedure to create an opening for the air to escape. Thus, Benji has a tube about ¾ inches in diameter, coming from inside his chest cavity to the outside of his right ribcage. This goes down into a little box on the floor which has some sort of suctioning ability to suck the air out.

These pneumos are also the cause of a term we’re more familiar with, “collapsed lungs.” When the air pocket becomes too large, there is a point when the lungs can no longer expand enough and therefore collapse. One of the Drs. told me that a normal lung, which is soft and pliable, would probably have collapsed but because of the fibrosis in Benji’s lungs, which causes his lungs to be more stiff and brittle, we were able to get the tube put in before they collapsed. I guess we can always find something positive in every situation, can’t we?

Benji is still getting all of his breathing treatments, in fact they’ve increased them to every 4 hours so he even gets them while he’s sleeping right now, but he has not been receiving his regular chest percussion therapy. The Drs. are constantly trying to balance the need for his percussion, which helps keep his lungs cleaned out, with the risk that the percussion could exacerbate the pneumo. Late this afternoon, they again did percussion, just to his left side, and about a half hour later he complained that he felt like he couldn’t breath. That didn’t last real long but a while later he said his chest hurt. Again, the Dr. was called and another chest x-ray was ordered, “stat.”

The x-ray machine was brought to the room and we are now waiting for the results. (It is so nice because they have this x-ray machine which they can bring up to the room and take the x-ray with him laying in his bed. Since he’s getting chest x-rays at least daily and sometimes like today, more often, it has been wonderful to have them come to us instead of us having to go to them!)

There’s a good possibility that the percussion this afternoon did cause the pneumo to increase but there’s not anything that would need to be done for that except to stop the percussion again. (Since the tube is already suctioning out the air.) Once the pneumo has healed enough to resume chest percussion Benji will have quite a bit of catching up to do to get his lungs cleared. (As much as is possible for him.) During this time he is also not doing any PFT’s, since that would most likely exacerbate the pneumo, so we really don’t have any way to gauge what his lung function is by now, but I can’t imagine those numbers would be great! His last PFT, just before Christmas was only 38 percent and he’s certainly not improved any since then!

A while ago, one of the nurses stuck her head in and said they were ordering Chinese and wondered if we wanted anything; surprisingly, Benji said he wanted some sweet and sour chicken. That should be here anytime and while we always are thrilled whenever any food sounds good to Benji, I’m sure he’ll only eat a few bites before he says he’s done. : )

Well, I made it through this without falling asleep; I think I’ll shortly be taking some Tylenol PM. I’m determined to get a good night’s sleep tonight!

Thanks for the notes in the guestbook, you’ll never know how much it means to open up his website and find new messages!

Thanks for caring enough to check in,

Until next time…

Monday, January 8, 2007 2:14 PM CST

Good evening all,

I don’t know why it’s so difficult for me to get the website updated this time but it seems like I just keep putting it off. I decided I had to get this done before I go to bed tonight but I can hardly keep my eyes open so don’t be surprised if some things don’t make sense or words are misspelled. : ) I just checked his website and surprised myself to find that I hadn’t updated anything since he had his chest tube removed!

Yes, he did have it removed on Tuesday as planned but it was an unbelievable ordeal! Benji was petrified of having it removed and just went hysterical when it came time to remove it. He had been given quite a good dose of sedatives but he so badly wanted to be put to sleep (and I so badly wanted it for him!), but for safety reasons and because of the “risk-benefit ratio” was not able to. The sedatives didn’t even seem to phase him and it ended up being an extremely emotional ordeal with myself and 2 nurses holding him down so the Dr. could remove the tube while he fought and pleaded with us over… and… over… and…over… and… over… to PLEEEEEEASE, NOT TAKE IT OUT! Once again, Mom buried her head in his hair and cried right along with him.

Fortunately, he didn’t even flinch when the tube was actually pulled so I don’t think he really felt much pain physically and after it was removed he quickly began to become more like himself both physically and emotionally and by the end of last week seemed like his old self again.

Most of you probably already know this but Benji had to have another emergency surgery last Monday night to have another chest tube put in.

We had some hint over the weekend that he may need to have another one put in, but then he seemed to sort of stabilize and about a half hour before Benji complained of his chest hurting on Monday night, I had told Allen that I thought he was doing pretty good and that I felt he was going to make it through without having to put another one in.

About 10:30 Monday evening Benji complained of chest pain again which he said felt like the same kind of pain he’d had before but not near as severe. The nurse immediately called the doctors and they came right down to check him out, ordered a chest x-ray and within an hour I was signing papers for him to have another surgery. We took him down to the O.R. around midnight Monday night, (and I haven’t seemed to be able to get back on a decent sleeping schedule ever since).

For the previous few days, since being told that there was more air in his chest cavity again, I had been dreading the thought of having to tell him he’d have to have another chest tube put in. Neither I nor the Drs. could believe how well he took the news! He suspected it after all the flurry in the room and he actually asked me, very calmly, (before I had a chance to sit down with him and tell him) if he was going to have to have another chest tube put in. His only response when I told him it looked like it was, “Are they going to put me to sleep like they did the last time?” After hearing that they were, he had no more concerns.

We decided, and it became his “pat” answer whenever he was asked about his feelings between that time and his surgery, that his philosophy was “as long as you put me to sleep, I don’t care what you do.”

Benji came through the surgery fine but while we previously had begun to feel like we were close to the top of the hill and just about ready to cruise down the other side, we’re now back at the bottom of the hill again, just starting our journey to reach the other side again. Once again he was quite “ouchy” the first couple days but, with the help of pain medications, has been moving around much better the last 24 hours.

For those of you who don’t understand the “chest tube thing”, which I didn’t either until I was able to see his x-rays last week, I’ll explain it as good as I can. The lungs are quite snugly encased within the ribcage which is also the chest cavity and on an x-ray you should not be able to see the outside of the lungs since they (the lungs) should expand all the way out to the chest cavity wall. I guess the chest cavity is an airtight space since if air from the lungs gets in there, it can’t escape anywhere.

So… if the lung is punctured or develops a spontaneous “pneumo” and air escapes into the chest cavity, it creates an air pocket between the outside of the lungs and the chest cavity wall which then does not allow the lungs to expand. (Pneumo is the medical term for the air pocket – which is caused by a hole or leak in the lung. It’s not possible to actually see the hole, the only way to know there’s a hole or how large it is, is by the amount of air in the chest cavity; which, through a chest x-ray, can be assessed, by how far away the exterior wall of the lungs are from the interior wall of the chest cavity.) I hope all this makes sense to you!

If that air pocket becomes large enough the only way to get rid of it is with some sort of surgical procedure to create an opening for the air to escape. Thus, Benji has a tube about ¾ inches in diameter, coming from inside his chest cavity to the outside of his right ribcage. This goes down into a little box on the floor which has some sort of suctioning ability to suck the air out.

These pneumos are also the cause of a term we’re more familiar with, “collapsed lungs.” When the air pocket becomes too large, there is a point when the lungs can no longer expand enough and therefore collapse. One of the Drs. told me that a normal lung, which is soft and pliable, would probably have collapsed but because of the fibrosis in Benji’s lungs, which causes his lungs to be more stiff and brittle, we were able to get the tube put in before they collapsed. I guess we can always find something positive in every situation, can’t we?

Benji is still getting all of his breathing treatments, in fact they’ve increased them to every 4 hours so he even gets them while he’s sleeping right now, but he has not been receiving his regular chest percussion therapy. The Drs. are constantly trying to balance the need for his percussion, which helps keep his lungs cleaned out, with the risk that the percussion could exacerbate the pneumo. Late this afternoon, they again did percussion, just to his left side, and about a half hour later he complained that he felt like he couldn’t breath. That didn’t last real long but a while later he said his chest hurt. Again, the Dr. was called and another chest x-ray was ordered, “stat.”

The x-ray machine was brought to the room and we are now waiting for the results. (It is so nice because they have this x-ray machine which they can bring up to the room and take the x-ray with him laying in his bed. Since he’s getting chest x-rays at least daily and sometimes like today, more often, it has been wonderful to have them come to us instead of us having to go to them!)

There’s a good possibility that the percussion this afternoon did cause the pneumo to increase but there’s not anything that would need to be done for that except to stop the percussion again. (Since the tube is already suctioning out the air.) Once the pneumo has healed enough to resume chest percussion Benji will have quite a bit of catching up to do to get his lungs cleared. (As much as is possible for him.) During this time he is also not doing any PFT’s, since that would most likely exacerbate the pneumo, so we really don’t have any way to gauge what his lung function is by now, but I can’t imagine those numbers would be great! His last PFT, just before Christmas was only 38 percent and he’s certainly not improved any since then!

A while ago, one of the nurses stuck her head in and said they were ordering Chinese and wondered if we wanted anything; surprisingly, Benji said he wanted some sweet and sour chicken. That should be here anytime and while we always are thrilled whenever any food sounds good to Benji, I’m sure he’ll only eat a few bites before he says he’s done. : )

Well, I made it through this without falling asleep; I think I’ll shortly be taking some Tylenol PM. I’m determined to get a good night’s sleep tonight!

Thanks for the notes in the guestbook, you’ll never know how much it means to open up his website and find new messages!

Thanks for caring enough to check in,

Until next time…

Friday, January 5, 2007 3:42 PM CST

Hello everyone,

We’re back at Riley again; we managed to be home for about 7 weeks this time and thankfully were able to enjoy Thanksgiving, Benji’s birthday, Christmas AND New Years at home this year!

This admission is different though. A little over a week ago Benji began complaining of some chest pain and did so off and on through early Wednesday morning; this was not unusual since he’d also complained of chest pains at various times previously. Those were usually associated with a decrease in lung function due to mucous plugs or possibly an embolism but typically were a sign that he wasn’t doing so well. This along with the fact that at Benji’s last checkup he’d only gotten a 36 percent PFT resulted in our anticipating the possibility of another admission soon, in fact just the night before we had told our small group that we wouldn’t be a bit surprised if he wouldn’t be able to make his 6 month checkup in St. Louis next Monday, January 8 because of being at Riley again. (The checkup that Benji got a 36 percent PFT was just a couple days before Christmas and even though he’s often been hospitalized when his PFT’s get that low he’d have had to be awfully sick for the Doctor to keep him so close to Christmas.)

Around 3:00 Wednesday morning Benji beeped us and when I (Cindy) went to check on him he was sitting up in bed crying and said that his chest hurt so bad he couldn’t sleep. He also said he couldn’t lie down because it hurt too badly. I got Allen up, gave him some Tylenol to help ease the pain and after an hour or so of working with him and seeing his oxygen levels fall we decided we needed to take him somewhere. We don’t trust our local hospital although the one other time we’d taken him there, they did work directly with our Riley Doctor and followed her instructions; Allen just felt better though taking him directly to Riley so… even though our page to the Dr. had not yet been answered, they took off around 4:30 am.

Come to find out, after doing a chest x-ray they found he had a hole in his lung and had to have an emergency surgery to put a tube in his chest. The hole in his lung had caused oxygen to seep into his chest cavity (which was causing his chest pains) and they needed to insert a tube from the inside of his chest cavity to the outside to suck the air out of the chest cavity. This typically needs to be in for a period of 3 to 5 days while the hole in his lung heals itself.

Benji came through that ok but is very sore and “ouchy.” The tube is coming out of his rib cage on the left side and he’s got a morphine button which he can push every 15 minutes to help ease the pain and discomfort. He’s pretty much a “touch-me-not” and doesn’t like moving or being moved. The Dr. said this morning that this is one of the most uncomfortable things to have and they hope they can take it out in a couple days.

At this point we’re expecting to be here for at least 2 to 3 weeks but it’s always impossible to get any satisfaction out of the doctors as to what their expectations are. We do know that he can’t even do a PFT until at least the end of next week and maybe even longer because of the soreness from his tube and I can’t imagine they’d release him before they can find out what his lung function is. He’s also going to need to do a lot of catching up when he’s better because they are not able to do any type of chest percussion right now, again because of the pain.

I don’t have a lot of other details for now but will update you when I do.

Thanks for checking in, until next time…

Sunday, November 19, 2006 1:47 PM CST

Hello all,

We are home again; we came home last Wednesday evening. As I’ve mentioned before, it always seems more difficult to get the update done when I come home. I suppose it has to do with the adjustments of moving back into a more complex situation. i.e. Benji’s total care as opposed to me assisting the nurses and at the same time taking back the responsibility of our entire family and home.

I always thoroughly enjoy the one-on-one time that I get with Benji during hospitalizations but my heart aches for the loss of a mother for our other sons! They have only had their mother home full time 5 of the last 12 weeks. During the other 7 weeks I’ve only been with them weekends or partial weekends and sometimes not even then. Allen is a wonderful father and does, what I believe to be, the best job possible in this situation but there is no way that he can fill the void the boys are experiencing. I doubt that they even realize that void anymore because living this way has actually become almost “normal” for us. Allen and I know though, that this will affect their lives in some way and we ask for your prayers that as they get older they will allow God to use this void for good and not for harm. While Benji is the one with the disease his brothers also suffer intensely at times and often sacrifice as well.

Back to Benji, we are home although I was more hesitant about bringing him home this time than I ever have because his condition had not been steadily improving as it has during previous hospitalizations. We did come home on oxygen, however, since we are home, his oxygen levels have risen and he’s only needed to be on nighttime oxygen the last couple days. PTL! Benji needing oxygen full time will be the biggest hurdle yet! I’ll go into more of that at another time.

Benji’s last PFT before we left was 44 percent again, still 10 percentage points under his high of 54 percent in September. We really have no explanation as to what’s going on right now- just continue to pray for wisdom for his doctors (and us) through all of this.

Thanks for checking in,
Until next time…

Wednesday, November 8, 2006 9:46 PM CST

Hello,

Yesterday it was 3 weeks since we've been here and it looks like our chances for going home this week are getting slimmer; while Benji’s oxygen levels have been better than last week (most of the time he’s only on it at night) there have been other complications. He’s been having diarrhea since the end of last week and it has been progressively getting worse; after he ran a slight temp yesterday afternoon they took a stool sample to test and found a bacteria in it. So, as of today he’s on 7 antibiotics, a med for reflux, one for nausea and another one for sinuses.

The doctor and I were discussing this morning about how complex his condition is; for instance, when he ran a temp yesterday, the problem could have been a new bacteria in his lungs or elsewhere, a virus, a reaction to a change in one of his antibiotics, or a reaction to one or more of the meds he’s taking to combat side effects from one or more of the antibiotics he takes, a possibility of reflux complications, a mucous plug, a pulmonary embolism or one of the old bacterium acting up or no longer responding to the current antibiotics. This means it often can take a while to weed through everything until they figure out what’s going on (if it’s even possible to figure out).

He did PFT’s yesterday and got a 44 percent again. His PFT’s since we’re here this time have been consecutively 39, 42, 44, 40, 39, 41, and 44 percent. We’re still hoping to be able to get them back up closer to the 54 percent that he had in September.

Again, for those of you who don’t know what a PFT is, it is a Pulmonary Function test and it measures lung capacity. Most of us would have results of 100 percent or possibly a little less, Benji’s lung capacity is approximately 40 to 50 percent of what it should be.

I had an interesting afternoon. Riley has begun construction on a new addition which they call the “tower”. It’s a huge, beautiful 10 story building and the expectation is to be in by October, 2008. Last Saturday one of the nursing supervisors, who is part of the committee that is designing the new patient rooms, stuck his head in the door and asked if I’d be willing to go downstairs with him sometime to look at the new “mock patient room” which has been constructed in the basement. He wanted to get my input about the room design since he said he figured I’ve pretty much got things “down to a science” by now. This afternoon he took me down to see the rooms.

For now they have framed-in and dry walled some exact replicas of the rooms, as well as created furniture out of foam board, in order to show what they’ll look like. Next they are actually going to finish, decorate and furnish them exactly like the finished product. The new rooms of course, will be top-of-the-line and it was quite exciting to see what they’ll look like and even be able to give some input into the final design. I can hardly wait to move into the new hospital! That sounds really strange, even to my ears, like we’re moving to a new apartment or something but after all, when you think about it, the last 6 months Benji’s hospital room has been “home” for the two of us at least a third of the time and nearly half the time.

This Saturday is when Benji really wanted to be home for his class party at his teacher’s house but I’m afraid he won’t make it. I told him this evening that if he can’t make it we would have another class party for him when he gets home. That seemed to satisfy him.

I guess there’s nothing else new to report so…

Until next time…

Thursday, November 2, 2006 10:10 PM CST

Hello everyone,

Allen came down to the hospital this afternoon and I got to come home for a couple nights. Of course, my time at home is always a flurry of “getting things done” before I go back down and even though the boys will be at school all day tomorrow, I still get to see them a little bit. Aaron and Tyler have plans here this weekend so they’ll be staying home but Cory and I will head back down to Riley on Saturday morning. Benji spends the week thinking about things he wants to do with his brothers when they come down the next weekend. He always looks forward to that, so much!

I noticed Rachel Brenneman was asking about school: We just finished up the first 9 weeks of school, Benji was there 5 of those weeks and in the hospital 4 of them. We have been so grateful that the school and his teachers (Mrs. Brenneman the last 2 years and Mrs. Kramer this year) have been so flexible and willing to work with us and Benji. I don’t believe they require Benji to have to do all his homework as long as he’s testing with the rest of the class and knows the concepts. Riley also has a wonderful school program where their teachers contact Benji’s teachers, find out what he needs to do and work on it with him. Without this program it would have been much more difficult for him to keep up! (I know from experience that he complains a lot more when I ask him to do homework than when the teachers do.)

Benji has been on oxygen all week, even during the day; often at 1 liter or a liter-and-a- half. Yesterday however, he got down to a half liter for a lot of the day and this afternoon he was totally off of it for about a half hour before I left. There’s a good chance he probably had to go back on tonight (oxygen levels usually drop while sleeping) though Allen said he was off all afternoon.

The echocardiogram Benji had on Monday showed unchanged and his PFT was 39 percent, which obviously is going in the wrong direction; tomorrow (Friday) he does another one.

The Doctors have been trying to figure out all week why he started to go downhill and yesterday they did a reflux “scintiscan” (x-ray) to determine if he has reflux. Benji does an awful lot of vomiting, he vomits at least 2-3 times every day (from gagging on mucous stuck in his throat) and did much more than that last week when he was nauseous! (Can you imagine needing to vomit daily, for years on end? Whenever I think of this I’m just amazed at how seldom he complains even though I know how much he hates to vomit.)

Back to the scintiscan, the doctors are pretty sure he does have reflux but wanted to check for sure and also wanted to see if he may possibly have aspirated some vomit into his lungs. The initial report was that the scintiscan showed negative for reflux, so it was back to trying to figure out the next step. However, Allen said the Doctor had stopped by this afternoon and said that they have reconsidered the results and believes Benji has reflux after all. Her hope is that Benji will continue to improve and possibly be able to go home by the first of next week. We’ll see how things go over the weekend.

Until next time…

Sunday, October 29, 2006 11:50 PM CST

I thought I had updated this last week and just now realized, for some reason, it wasn’t saved onto the website. I’m sorry it’s been so long. There had been a possibility that Benji could be released Friday or Saturday but Thursday night he had to go back on oxygen after having not needed it at all last week. Since then it seems like his oxygen has been steadily dropping. Today he was on-and-off it throughout the day and while he had started out on ½ liter of oxygen he’s now up to 1 ½ liters. It’s really discouraging and frustrating to not know what’s going on or why.

He had PFT’s on Tuesday and Friday, those were 44 and 40 percent respectively. He really hasn’t acted very sick most of the time since we’re here except for a few days last week. He was struggling with nausea and vomiting but by the end of the week they started regularly giving him medication for nausea and that seems to have taken care of it.

Up until the last few days I would have thought that the main reason they’d be keeping Benji here would be because of his meds. This 5 drug cocktail has still not been totally ironed out and they’re still working on it; however, since his oxygen levels have been dropping, we’re not sure what to expect as far as length of stay. (Benji's only concern is that he gets home in time for a class party at his teacher's house next Saturday.) He’s got an echocardiogram scheduled for tomorrow morning, to check the blood clot in his heart; we’ll need to see what that brings.

Last weekend Allen, Tyler and Cory came down Saturday afternoon and stayed until Sunday evening. On Sunday Grandma and Grandpa Troyer and Dale AND Benji’s cousin Landon came down to see him. I needed to go home for Monday so Mom came down to stay with Benji for the night and brought Landon along to surprise Benji. (Dad and Dale rode back with us.) Of course Benji was VERY excited to see him and it sounds like they had a wonderful time. Benji was sleeping when I got up to the room Monday evening. (I guess he and Landon had been up quite late the night before and didn’t seem to be able to make it through the afternoon.) Shortly after I was back in the room Benji woke up just long enough to see me and say, “Why are you back already?” How’s that for a welcome back!

Amanda, our nurse on Monday evening had also had them the night before and she laughingly told me she didn’t think those boys got much sleep that night and that for a while when she’d come into the room, Landon would be on the chair bed one time and the next he’d be in Benji’s bed. They’d also try to pretend to be sleeping but before long would start giggling. (All this time Grandma was sound asleep.) Mom had told me that when she went to sleep on Sunday night Landon was in the chair bed and when she woke up the next morning, he was in Benji’s bed. It sounds like they made some good memories and I’m so thankful the hospital allows Benji to have these sleepovers here! (It did take Benji a few days to catch up on that late night though.)

This has been a busy week for visitors, which of course we always enjoy; Thursday evening Kenny and Anita Martin and their daughter Chantel stopped in since they were down here anyway to see Kenny’s niece, then on Friday, Allen and the boys came down again. Saturday Benji’s uncle Steve and aunt Regina and their kids came to visit and today his uncle Sylvan and aunt Connie and his uncle Jim and aunt Shirley and their family came to see him. I figured he’d be “out” pretty early this evening after everyone left since he’d had such a busy weekend but it’s after midnight and he’s still not sleeping. (Maybe he’ll be catching up the next few days again.)

Well, I think that’s all for now. Thanks for the notes in the guestbook; those are always encouraging to find!

Until later…

Thursday, October 19, 2006 10:30 AM CDT

Well, we’re back again. As I had told you earlier, the PFT Benji had just before he was discharged from the hospital last time was 54 percent. This was the highest he’s had for 2 years! However, at our 2-week checkup we were really disappointed when his PFT’s dropped 13 percentage points to 41 percent. We weren’t expecting anything like this; we weren’t even aware that he was that much worse! Neither we nor the doctors know of anything we are doing or not doing that would cause this, which, I think makes it even harder to accept since it makes the situation so totally out of our control and there’s absolutely nothing we can do to help the situation.

Benji’s doctor wanted us to come back again in 2 weeks (which ended up being about 3 weeks) for another checkup and she told us then that if his functions weren’t up, he’d probably need to be hospitalized.

I (Cindy) went home from that checkup pretty discouraged! It just seemed like we couldn’t “catch a break” and get to stay home for any length of time. Over the last 6 months, I believe the longest we’ve been home between hospitalizations has been about 5 weeks and I was not at all prepared mentally or otherwise to come back again so soon.

Last Tuesday, October 17, was our next appointment. In the few weeks we had between visits I had caught up on as many things as possible at home and was able to come down much more mentally prepared to stay. (And packed to stay as well.) Based on the previous visit we didn’t expect any improvement and would have been pleasantly surprised if we wouldn’t have needed to stay! Benji’s PFT’s on Tuesday were only 39 percent.

When he’s in the hospital he gets put on more IV antibiotics; (right now he’s back on 7 different antibiotics again, 3 of which are IV’s) this would be very difficult to keep up at home. He’s also in a much more protected environment here in the hospital which I’m sure helps. Aside from this, the side effects, actual benefits, etc. relating to the drug cocktail he was started on in August has not yet been totally ironed out which can be done under a more watchful eye here than at home.

Being hospitalized is not near as big a deal for Benji as it is for the rest of us. When he’s here he has almost no responsibilities and gets to watch a lot more TV and play a lot more video games than he gets to at home. I would assume that the focused attention he gets from his mother (or father when he’s here) might play into that as well. I do enjoy having that time with him but wish I could spend that kind of time with the other boys as well.

Benji’s spirits are good and he really doesn’t feel sick; there has been some decrease in oxygen levels over the last number of weeks so he was getting out of breath more quickly but otherwise didn’t seem all that different. As an example of how quickly he can get out of breath: he could almost not make it walking into clinic from the parking garage, at a constant pace; he was already struggling to keep up and with his breathing before we were even half way there. If his dad had been along he would have put him on his shoulders. (This is the way Allen carries him around but his mother doesn’t have shoulders and back that are strong enough to do that! In fact, she has a difficult time even carrying him “piggyback” for very long. ) Unfortunately there were no wagons available on Tuesday but together, we managed to make it. He has needed to be on oxygen off-and-on since we're here.

I don’t have a lot of other new information right now so I’ll say goodbye. Thanks for checking on us!

Until next time…

Thursday, October 19, 2006 10:30 AM CDT

Well, we’re back again. As I had told you earlier, the PFT Benji had just before he was discharged from the hospital last time was 54 percent. This was the highest he’s had for 2 years! However, at our 2-week checkup we were really disappointed when his PFT’s dropped 13 percentage points to 41 percent. We weren’t expecting anything like this; we weren’t even aware that he was that much worse! Neither we nor the doctors know of anything we are doing or not doing that would cause this, which, I think makes it even harder to accept since it makes the situation so totally out of our control and there’s absolutely nothing we can do to help the situation.

Benji’s doctor wanted us to come back again in 2 weeks (which ended up being about 3 weeks) for another checkup and she told us then that if his functions weren’t up, he’d probably need to be hospitalized.

I (Cindy) went home from that checkup pretty discouraged! It just seemed like we couldn’t “catch a break” and get to stay home for any length of time. Over the last 6 months, I believe the longest we’ve been home between hospitalizations has been about 5 weeks and I was not at all prepared mentally or otherwise to come back again so soon.

Last Tuesday, October 17, was our next appointment. In the few weeks we had between visits I had caught up on as many things as possible at home and was able to come down much more mentally prepared to stay. (And packed to stay as well.) Based on the previous visit we didn’t expect any improvement and would have been pleasantly surprised if we wouldn’t have needed to stay! Benji’s PFT’s on Tuesday were only 39 percent.

When he’s in the hospital he gets put on more IV antibiotics; (right now he’s back on 7 different antibiotics again, 3 of which are IV’s) this would be very difficult to keep up at home. He’s also in a much more protected environment here in the hospital which I’m sure helps. Aside from this, the side effects, actual benefits, etc. relating to the drug cocktail he was started on in August has not yet been totally ironed out which can be done under a more watchful eye here than at home.

Being hospitalized is not near as big a deal for Benji as it is for the rest of us. When he’s here he has almost no responsibilities and gets to watch a lot more TV and play a lot more video games than he gets to at home. I would assume that the focused attention he gets from his mother (or father when he’s here) might play into that as well. I do enjoy having that time with him but wish I could spend that kind of time with the other boys as well.

Benji’s spirits are good and he really doesn’t feel sick; there has been some decrease in oxygen levels over the last number of weeks so he was getting out of breath more quickly but otherwise didn’t seem all that different. As an example of how quickly he can get out of breath: walking into clinic, at a constant pace, from the parking garage, he almost couldn't make it. He was already struggling to keep up and with his breathing before we were even half way there. If his dad had been along he would have put him on his shoulders. (This is the way Allen carries him around but his mother doesn’t have shoulders and back that are strong enough to do that! In fact, she has a difficult time even carrying him “piggyback” for very long.) Unfortunately there were no wagons available on Tuesday but I did manage to carry him on my back part way and together we managed to make it. He has needed to be on oxygen off-and-on since we're here.

I don’t have a lot of other new information right now so I’ll say goodbye. Thanks for checking on us!

Until next time…

Monday, September 11, 2006 8:05 PM CDT

Allen, Cory and Tyler came down yesterday and while the boys went back with Sylvan and Connie, Allen and I both stayed down for the night. At this point we’re still hoping to be able to come home tomorrow but we’re waiting till after PFT’s for the Doctor to let us know. If we need to wait till the end of the week I plan to still drive home tonight and be home for a few days while Allen stays down here; if we can be released tomorrow Allen will go home this evening and Benji and I will come home tomorrow.

There have been quite a few things that have happened since the last update; I’ll start with the good stuff. On Friday Benji’s school teacher, all of the 3rd and 4th graders and 2 moms (Karen Miller and Denise Bontrager) had a “field trip” to come see Benji! (See the new pictures in the photo album.) What a gift for Benji! I had not told him who was coming but after his horrific Thursday, to help cheer him up, I did tell him he had some very special, unusual guests coming to see him the next day. He couldn’t even begin to guess who it was.

By the time they drove the 3 hours to get here, parked and got up to the room it was close to noon; they spent about and hour here with Benji and ate their sack lunches in his room before leaving to go to Conner Prairie, north of Indy, for the remainder of their field trip. I think this will make Benji's transition to school much easier when he gets home and I also think the other kids will be much better able to relate when he talks about his experiences this time as well as the next time he comes down. Thank you so much for doing this! Benji (and I) will never forget this! It was an invaluable blessing for us!

Thursday was an extremely difficult day for Benji and as a result for me too. Benji expressed himself by pounding his bed and screaming and using phrases like: “This is the most pain I’ve ever had in my life!” “I’ve had enough pain for one day!” “I hate this place!” For the first time I saw him express his feelings regarding the consequences of having Cystic Fibrosis with real anger. While we totally understand his feelings, and at times feel them ourselves, we are trying to understand how to best help him express them in a healthy way. There were many times Thursday afternoon and evening that I really wished Allen was here with me to help me deal with him!

For the past year-and-a-half Benji has struggled with fairly severe reactions to any adhesives; this creates a problem since whenever he has an IV his port site needs to be covered to keep it clean. Thursday was the day to change the needle in his port (which is done once-a-week) and while he always complains quite a bit about it hurting when they remove his dressing, this time when they took it off, his skin was even more raw than usual. There were areas that were actually seeping blood and later it was decided he had a fungal infection around the port site.

During the “prep” for re-accessing his port (putting in a new needle) the skin around the port needs to be sterilized with an alcohol based solution and even though the nurse used betadine in an attempt to lessen the pain Benji screamed when she attempted to clean it. Then when she tried to access it she was unable to hold it the way she needed to because it was too painful for Benji and in the process, unknowingly missed the port and flushed saline (saltwater) into the raw tissue around his port. Poor Benji! I THOUGHT HE WAS GOING TO GO THROUGH THE ROOF!

She immediately realized that she had probably missed the site and after speaking with the doctors decided to send him down to the doctor who had originally installed his port to make sure it was still working properly. The plan was to check out the port and if it didn’t work to put in a temporary picline. It was 6:00 pm before Dr. Marshallek was able to work him in and after attempting to look at the site and seeing how painful it was for Benji and the hysteria the pain had created in him decided he didn’t want to do it without anesthesia. Unfortunately it was too late in the day for that so he decided to schedule it for Friday. (And even agreed to try to work around Benji’s “special guests.”)

Benji and I were both very relieved that Dr. Marshallek was not going to cause any more pain and that Benji was going to be put to sleep before he did anything more! My stomach had been in knots thinking of needing to deal with Benji if Dr. Marshallek had done anything! (It’s impossible to describe the reaction Benji had had and the sheer terror and hysteria he was feeling at the idea of having to suffer more pain!) However, the relief was short-lived because when we got back up to the floor we were told he’d need to have an IV put in until the next day.

Benji had just been getting to the point where he was handling needles much better. In fact, the last few times we’d accessed his port he had done so well and hardly made a noise! It feels like the progress he had made is completely gone! Putting in the IV was a nightmare and even trying to put some salve on the infected port site later was as well! I have NEVER seen him respond with this much hysteria! Since then he has been responding to many things he doesn’t want to do (even non-medical things) with anger and a demeanor and sometimes words that say, “You’re not going to make me do this, I’ve already had enough pain” or “You’re not going to make me do this, I deserve to not do this because I suffered so much on Thursday.” It’s been a real challenge to know how to deal with him. (By the way, in case you’re wondering, Benji has never shown an interest in reading our updates and never sees them; I just read him the notes from all of you.)

Benji and Allen just came back into the room after PFT’s and Benji got a 54 percent!!!!!!! Praise the Lord! This is incredible! We can’t figure out what’s going on but we are (obviously) very excited!

Benji is still having some bouts of nausea but not near to the extent that he was. Oh yes, about his eyesight, another praise! When we took him down to the ophthalmologist’s office to have his eyes officially checked they tested normal! We don’t know why this was(aside from a miraculous healing) unless the blurred vision was simply a temporary reaction to the meds and once he dropped a few of them or his body became used to them it went away. Whatever the reason we are just grateful that his vision is ok!

We’ve just spoken to the doctors and we are planning to come home tomorrow. Allen just left for home and Benji and I will probably be home by tomorrow evening.

Thanks for checking on Benji!

Until next time…

Monday, September 4 and Wednesday, September 6. 2006

Monday, September 4, 2006

This is Monday (Labor Day), Allen and the boys came down after Sunday School yesterday and are with us till this afternoon. We’re all sitting in Benji’s room acting pretty lazy today.

While Benji’s chest pain seems to be mostly gone (he only complained a couple of times last week) he’s now dealing with nausea. The doctors attribute it to all the antibiotics he’s taking which certainly makes sense! By the end of last week I had determined that while Benji probably was experiencing some “let down” after his brothers left the majority of his “blues” problem last week was that he simply felt lousy. By midweek I noticed that right after he would vomit he’d perk up noticeably for a while until the nausea again began to set in. While vomiting is certainly not unusual for Benji, it’s typically associated with his coughing fits and is in relatively small amounts. This vomiting however, was totally unrelated to coughing and he was throwing up a large portion of what he was eating.

By the end of this week he’d lost a couple pounds and I was thankful that the Drs. decided to give him something for the nausea. Since then he has felt SO MUCH BETTER. He did have a short bout of nausea on Saturday but vomited a while later and felt ok after that. The Dr. mentioned something about trying to wean him off this medication after a few more days of being on it so that tells me we’ll probably be here at least into next week. We’ll need to make sure his body is able to handle the antibiotics before he goes home and it’s just kind of a slow, drawn-out process.

Benji did PFT’s on Friday and I was grateful to see they were back up to 41 percent which was his “normal” up until spring of this year.) Tomorrow it’s time to do another one and I’m anxious to see if he can get it any higher tomorrow.

Cory came down on Friday with my Mom and Dad and Dale and he stayed here after they left. On Saturday Rose and Jason (my sister and husband) and their family came down to see Benji and their son Jalen (who is just 4 months older than Benji AND WHO HAS A BIRTHDAY TODAY – HAPPY BIRTHDAY JALEN!!!!) swapped with Cory. Cory rode home with them on Saturday night (they also have a daughter about Cory’s age) and Jalen stayed here for the night. It appeared that Benji and Jalen both thought this was a wonderful idea!

On Sunday then Jalen went back with Sylvan and Connie (Allen’s brother and his wife) who had come down to see Benji (and who also came down to see him last Sunday.) while Cory came back down to the hospital with Allen, Aaron and Tyler.

Sunday evening we had a nice surprise: I got off the elevator on Benji’s floor and was surprised to see Gary Schrock sitting in the Parent’s Lounge! Topper and Marilyn Knepp and Gary and Ruth Schrock had come down to see us. After talking a bit with Benji (who almost ignored them because he was so into his game cube) Allen and I went out to dinner with the four of them while the other boys stayed here in the room with Benji. We had a nice time visiting with them for several hours before they had to head back.

I don’t know if I’ve mentioned it recently or not but Benji’s always in isolation which means we always have a private room. This is wonderful; I just move in with him and so I don’t get a backache on those hospital chair beds I bring my air mattress along (as well as “a few” other things to make our stay more convenient and enjoyable.) When the boys come they can sleep in the room with us and we never have to worry about sharing the room with another person and their family.

This is all for now,
Until later….

PS. The following is an excerpt I copied from a story someone with CF had written about her life. Even though I'm a mother living with a child with CF I will never have the perspective of someone who actually has the disease. As Benji is still not able to express himself so well I very much enjoyed reading her story. This particular paragraph was particularly insightful for me and thought it might be for some of you as well.

"As CFers, so little is in our control. We have no idea what our futures hold. We can’t do half the things normal people can do (or at least not as easily), especially as time passes. We have no idea if we’ll live long enough to graduate college, to get married, to have a career, to have kids. We don’t know if we’re even capable of having kids. Try as we might to fight it by being diligent with therapies, medicine, IVs, hospitalization, it’s still a progressive disease. No matter how much effort we put into living, we’re still always dying. That gets pretty tiring and irritating. Because of all these things over which I have no say, I’m very protective over the things where I get to call the shots. If anything that I think I have control over changes, and suddenly I lose the reins, I get very upset. I was bossy growing up (and more than likely still am), and I attribute that to this same reason."

Wednesday, September 6, 2006

Just wanted to let you know that Benji had a PFT of 47 percent yesterday! Praise God! If we were only dealing with his lung function we’d be going home; however, we still need to go through the process of trying to figure out how he can take the meds he needs without nausea and vomiting. The process of weeding through all that can sometimes get kind of drawn out.

We also need to figure out what’s going on with his eyes; he’s complained about having blurred vision ever since we’re here and when they checked his eyes his vision had deteriorated to 100/20. (in July it was 20/20!) Fortunately the doctors don’t believe he has any nerve damage and think that since this is probably a side-effect of one of the antibiotics he’s taking there is the possibility that he would need to wear glasses while he’s on this med and then his eyes would clear up after he goes off of it. This is also something they need to figure out before we’re released.

Right now there is a possibility that we can go home by the first of next week and MY goal is to at least be home by that weekend (September 16th) so Benji can make it to church campout. We’ll see.

Until later…

Tuesday, August 29, 2006 8:40 PM CDT

We’re still here…

Well we’re back at Riley again! Sunday morning I left church early with Benji because he was complaining that it hurt every time he took a breath. This has happened other times but his response this time was much more prolonged and intense. I knew for sure that something was wrong when he laid down on the couch and fell asleep without even asking to watch cartoons or something. He was also running a slight temp and after giving him some ibuprofen he fell asleep. Allen had been gone for most of the afternoon and Benji wasn’t any better by the time he got home, if fact he was worse. I don’t know why, but for some reason I hadn’t thought about this possibly being the blood clot in his heart but as soon as Allen mentioned that might be what was going on, I became really concerned. We called our Dr. at Riley and she recommended we take him to our emergency room for a chest x-ray and CT scan then they were to call her and talk to her about the results.

Allen took him right out to Goshen ER and when I got there later I found Benji on oxygen and breathing very fast; I was quite concerned with what I saw. After some tests, they said they didn’t think the problem was the blood clot but that his white blood cell count was extremely high (which meant he was probably fighting off some type of infection.) The Riley Dr. wanted us to bring him down right away so Allen went home to pick up a few things, I’d already packed most of what they’d need but he went back home for the oxygen tank and a couple other things. The plan was that I finish up some things at home and go down Monday morning so Allen could come home.

I had some difficulty sleeping that night because I hadn’t seen Benji this bad for quite awhile. Allen called Monday morning and said he didn’t want to worry me because Benji was doing much better now, but that he’d been put in Intensive Care overnight so they could monitor him more closely; once I was assured that Benji was ok, I was very grateful I hadn’t known sooner or I really wouldn’t have gotten any sleep! While during the night his oxygen level had gotten quite low on “room air” and his breathing had been quite labored, by morning he was much better and by mid-morning he was completely off oxygen and had been moved back down to his room on 3A. Since then he has been doing fairly well; he’s still running temps and his lungs sound pretty “crackly” and his PFT was down quite a bit yesterday, he seems fairly normal. Nobody’s totally sure yet what the cause of this is but with tests and a little time we might get a better idea of what we’re dealing with.

Two Fridays ago Benji had come down for a checkup and again hit a 51 PFT! We have been so excited about his increased PFT’s this summer and he has seemed so much healthier so all this comes a bit unexpectedly.

I had told you previously that we would need to come back down when Benji’s new meds got approved but they called us last week to tell us the meds were here but that he wouldn’t need to be hospitalized. We were just supposed to come down and pick them up and go back home. While I was really surprised that they would start him on all these new meds without being monitored, I was really glad that he’d be home for the first day of school on Monday, the 21st. Obviously that didn’t happen since he had to come down here Sunday night. I guess that’s one of the “unfair” consequences of having this vicious disease.

He started this new “drug cocktail” on Thursday evening and seemed to do ok with them but this also needs to be taken into account when determining the cause of this latest episode. The IV that he’ll need to be on for the next year does need to be given every 6 hours but thanks to an IV pump we hadn’t known was available, we only need to administer it once a day. There is a pump you can get that will automatically inject a dose at set times throughout a 24 hour period. The benefits of this are that Allen and I don’t need to get up through the night to give the antibiotic and that we don’t have to worry about making sure he gets it at exactly the same time each day; the down side is that Benji has to carry this pump around with him 24-7. It’s a relatively small pump but fairly heavy for a little guy like him to carry around.

Timelines for length of stay here are always difficult to get out of the Docs but last evening I did get her to say we can expect to be here at least 2 weeks.

Tuesday, August 29, 2006

Benji complained of his chest and back hurting when he breathed and ran a temp most of last week. His pains continued through the weekend but seem to be better now and as far as I know, he hasn’t had a temp since the end of last week. On Thursday of last week his temp actually spiked up to a little over 102 (higher than it’s been) and he also had to go on oxygen for a while. During this time they got a stool and urine sample and drew blood from his port as well as peripherally (through a vein). By Saturday they got some test results which showed that he has a staff infection in his blood so his antibiotics were increased to NINE (four of them IV’s)!! (For those of you interested they are azithromycin, levofloxacin, meropenem, clofazimine, ethambutol, amikacyn, vancomycin, gentamicin, and then to prevent him getting thrush from all the antibiotics, they gave him a nystatin mouth rinse.)

By Sunday they dropped one of the antibiotics since they were able to rule out one of the two types of blood infections he possibly had and also told us that there was a chance that he didn’t actually have staff in his blood, that it might instead be a contaminate. This would mean that some of the staff bacteria had gotten on the needle but wasn’t in his blood; they thought this might be the case since the blood draw from his port didn’t show he had it but the peripheral one did. Saturday they did another blood draw to double check. (I was just now told that he has also been taken off the vancomycin which means that his last blood draw must not have grown any staff! So now he’s only on seven antibiotics!) Thank God he doesn’t have it; this can be a fatal infection!

Allen and the boys came down on Friday night and stayed for the weekend. Benji was so excited about his brothers coming and could hardly contain himself. We had a good weekend together; both nights Cory slept in Benji’s bed with him, since that’s where Benji wanted him, and on Friday night Tyler slept in the room, Saturday night Aaron did. Allen and the “other one” stayed at a hotel.

On Sunday afternoon I left and took the boys home with me while Allen stayed here with Benji. I had a doctor appointment scheduled at home on Monday and went home so I could keep that appointment. Last evening I came back down and Allen went home.

Both Allen and I noticed that ever since Sunday morning Benji’s been pretty quiet and almost seems like he’s depressed. When I asked him about it he says there’s nothing wrong and it’s really difficult to know what’s going on. He’s been complaining a lot about stomach aches the last few days and it might be that he just doesn’t feel well or it could be disappointment about his brothers leaving or that Sam, the former Child Life Specialist is no longer here and no one was able to come spend time with him last week. It could also be a side affect from one or more of his meds. Please remember his emotional state in your prayers as well.

Benji again did PFT’s on Monday; I expected the number would go up at least a little from the 38e got last week but he only got a 32 yesterday. Needless to say, we were disappointed.

We still don’t know how long we’ll be here but I don’t expect it will happen before next week and we’ll have to see how he’s doing by then.

We still don’t know how long we’ll be here but I don’t expect it will happen before next week and we’ll have to see how he’s doing by then.

Thanks to all of you who are offering your assistance in many different ways! It means so much!

Continue to keep us in your prayers!
Until next time…

P.S. Again today I heard a couple more wonderful success stories of people/children who had lung transplants. It’s always so encouraging to hear those!

Wednesday, August 23, 2006 11:13 AM CDT

Well we’re back at Riley again! Sunday morning I left church early with Benji because he was complaining that it hurt every time he took a breath. This has happened other times but his response this time was much more prolonged and intense. I knew for sure that something was wrong when he laid down on the couch and fell asleep without even asking to watch cartoons or something. He was also running a slight temp. I gave him some ibuprofen and he fell asleep. Allen had been gone for most of the afternoon and Benji wasn’t any better by the time he got home, if fact he was worse. I don’t know why, but for some reason I hadn’t thought about this possibly being the blood clot in his heart but as soon as Allen mentioned that might be what was going on, I became really concerned. We called our Dr. at Riley and she recommended we take him to our emergency room for a chest x-ray and CT scan then they were to call her and talk to her about the results.

Allen took him right out to Goshen ER and when I got there later I found Benji on oxygen and breathing very fast; I was quite concerned with what I saw. After some tests, they said they didn’t think the problem was the blood clot but that his white blood cell count was extremely high (which meant he was probably fighting off some type of infection.) The Riley Dr. wanted us to bring him down right away so Allen went home to pick up a few things, I’d already packed most of what they’d need but he went back home for the oxygen tank and a couple other things. The plan was that I finish up some things at home and go down Monday morning so Allen could come home.

I had some difficulty sleeping that night because I hadn’t seen Benji this bad for quite awhile. Allen called Monday morning and said he didn’t want to worry me because Benji was doing much better now, but that he’d been put in Intensive Care overnight so they could monitor him more closely; once I was assured that Benji was ok, I was very grateful I hadn’t known sooner or I really wouldn’t have gotten any sleep! While during the night his oxygen level had gotten quite low on “room air” and his breathing had been quite labored, by morning he was much better and by mid-morning he was completely off oxygen and had been moved back down to his room on 3A. Since then he has been doing fairly well; he’s still running temps and his lungs sound pretty “crackly” and his PFT was down quite a bit yesterday, he seems fairly normal. Nobody’s totally sure yet what the cause of this is but with tests and a little time we might get a better idea of what we’re dealing with.

Two Fridays ago Benji had come down for a checkup and again hit a 51 PFT! We have been so excited about his increased PFT’s this summer and he has seemed so much healthier so this all comes a bit unexpectedly.

I had told you previously that we would need to come back down when Benji’s new meds got approved but they called us last week to tell us the meds were here but that he wouldn’t need to be hospitalized. We were just supposed to come down and pick them up and go back home. While I was really surprised that they would start him on all these new meds without being monitored, I was really glad that he’d be home for the first day of school on Monday, the 21st. Obviously that didn’t happen since he had to come down here Sunday night. I guess that’s one of the “unfair” consequences of having this vicious disease.

He started this new “drug cocktail” on Thursday evening and seemed to do ok with them but this also needs to be taken in to account when determining the cause of this latest episode. The IV that he’ll need to be on for the next year does need to be given every 6 hours but thanks to an IV pump we hadn’t known was available, we only need to administer it once a day. There is a pump you can get that will automatically inject a dose at set times throughout a 24 hour period. The benefits of this are that Allen and I don’t need to get up through the night to give the antibiotic and that we don’t have to worry about making sure he gets it at exactly the same time each day; the down side is that Benji has to carry this pump around with him 24-7. It’s a relatively small pump but fairly heavy for a little guy like him to carry around.

Timelines for length of stay here are always difficult to get out of the Docs but last evening I did get her to say we can expect to be here at least 2 weeks.

Until later…..

Sunday, August 6, 2006 3:58 PM CDT

Benji and I (Cindy) are back home (temporarily) until the drug gets approved; we'll update this when we know more.

Until then...

Friday, August 4, 2006 0:38 AM CDT

We are at Riley again, the 4th time in 4 months. We were here for 2 weeks in April, 1 week the end of may, 4 days in June (for his blood clot) and 1 week in July. We came down here 4 days in June after the doctors in St. Louis found the blood clot in Benji’s heart so the Riley could decide how to treat it. After some major confusion (The Hematologists were telling us Benji’s clot should be treated one way and the Cardiologists were telling exactly the opposite. To make matters worse, our regular Dr. was out of town on vacation that week.) anyway, things finally got ironed out it was decided to not treat the clot for now as they felt the risk was greater to treat than not to treat. The treatment would have been to give him blood thinners but with cystics there is a high risk of thinned blood seeping into the lungs and I guess leaving it alone while monitoring it with periodic echos.

As to why we’re here now, even though Benji’s PFTs were about the same (44a couple weeks ago when he came for clinic and Dr. Howenstein felt pretty good about where he was at, she wanted Benji to come in for a tuneup before school starts. Since we wanted to be back for a Troyer family campout next weekend she had us come in last Thursday.

When we got here Dr. Howenstein informed us that since his clinic she’d received/seen a report of a sputum culture from last April which showed the AFB (acid-fast bacilli: the vicious, rare atypical mycobacterium) in his lungs have grown some resistance the antibiotic he’s been for over a year. Along with that a new AFB, from the same family, was found in his lungs. Dr. Christianson want to take him off the old antibiotic and replace it with 5 new ones: 3
orals, 1 inhalant and 1 IV for at least one year!

It does look pretty overwhelming to think of doing IV’s at home for that long, It appears the IV will need to be given a minimum, of 3 times-a-day and possibly 4. The 3 times-a-day IVs have been fairly stressful when we’ve had to do them at home and I was always relieved when it ended; the last time we did them at 7am, 3pm and 11pm, this way he didn’t have to do them at school but it meant Allen or I needed to stay up every night till at least 11. 4 times-a-day means one of us will need to get up in the middle of the night every night. Again this looks really huge but God has been so faithful in giving us the grace and strength we need to deal with each thing comes along and we trust him and know he’ll do that again. A year from now (or probably even a few months from now) it will seem like part of our “normal” routine.

I guess one of these drugs in the drug “cocktail” they want to give him has only been approved for one specific disease and it is currently going through the “red tape” of having it approved specifically for Benji’s case. Earlier this week they thought they could still get approved this week but yesterday the doctor said it looks like it’ll be a couple weeks yet. Since the drugs all work together he doesn’t want to start any of them until he can do all of them together and so it looks like we’ll be able to go home tomorrow (Friday) for a few weeks until this drug makes it through the governmental red tape then we’ll need to come back down for a while.

That was the bad news, now for the good news... In May Benji had a PFT of 46 I (Cindy) almost couldn’t believe it since he’d been hovering in the high 30's to low 40's for quite a while. We checked and he’d not had one that high since May of 2005. A couple weeks ago, when he came for clinic, he had a 44 A while after admission, on our first evening here, I asked the nurse if they’d checked his oxygen; she said the PSA had and she thinks she said it was 98 I responded with, “oh I don’t think that must have been right, we think he’s doing great when he’s at 95 and 96 percent and he’s never at 98 But sure enough a couple nights later he had another 98 At PFTs on Monday his first one was a 37, his second was a 44, the next three were a 49 and two 50's!!!!!!!! I wanted to shout from the rooftops! We never thought he’d see another 50 with these lungs! He has only hit 50 one other time in the last year and-a-half! We don’t know why their higher and as far as we know, we’re not doing anything different but we are praising God!

One of the really sad things about coming here so often is that we get to know and like a lot of the staff and at times those we’ve made friends with decide to move on to another job; I have kept in contact with one special lady (one of the Respiratory Therapists) that has left but most of them we’ll probably never see again. Sam, Benji’s Child life Specialist for the last 1 ½ is also going to be leaving; tomorrow is her last day. Her job is to spend time with the kids, bring them things to do, keep them occupied with activities and at times keep them preoccupied during scarey or difficult procedures. Almost every day that Benji’s been here (except weekends) she’s spent ½ hour to an hour and sometimes even more doing things with Benji and he’s really going to miss her! We’re both really sad to see her go!

Until next time...

Tuesday, June 13, 2006 8:24 PM CDT

Hello,

The last week of May Benji spent at Riley again; we came home the night before we left for St. Louis Children's hospital for an evaluation to have Benji put on the lung transplant list. The following is an update about St. Louis.

Despite a chance for a couple fun things in the evenings, our time in St. Louis was quite intense. We went with the understanding that this evaluation was to determine whether or not Benji would be approved for the transplant list; however, though we’ve not heard definitely, it seems they had already decided they would approve Benji before we came unless something in his tests or something they saw in us made them change their minds. We were told that they wouldn’t have brought us down there if they weren’t already quite sure beforehand that they would approve him. We don’t know or understand what all the criteria are to qualify for an evaluation but we feel very fortunate. We’re aware that another cystic from Riley had been referred around the same time as Benji but St. Louis declined to accept the referral.
We found the Transplant Team to be very warm, welcoming and open. The “Team” consists of a Transplant Nurse Coordinator, two Surgeons, the Pulmonologist, a Nurse Practitioner, Dietician/Nutritionist, Psychologist, Social Worker, Child Life Specialist, Physical Therapist, Respiratory Therapist and Financial Coordinator. The three days in St. Louis were scheduled full of meetings and tests from 8:00 am to around 4:00 pm each day. Benji went through a battery of tests: physical examination, blood work, physical therapy, a large range of lung tests, bone density test, CT scans, x-rays, EKG, echocardiogram and a psychological evaluation.
The first morning we went to CF clinic; this is where Benji (if listed) will go for checkups prior to transplantation. At clinic we (Benji, Allen, myself and my parents) met our Transplant Coordinator, Dietician, Pulmonologist, Social Worker and one of the two surgeons. The surgeon was the first person to meet with us along with the Transplant Coordinator and explained in detail, with what Allen later called “brutal honesty”, what a transplant involves. The picture they painted was so bleak that by the end I asked if they even recommended anyone having a transplant. Their answer was that this needs to be our decision but that it would be wrong for them to not help us understand what the true picture is. The one thing they said they wanted to do was impress on us that a lung transplant is not magic and is not a cure; in fact it is simply trading one disease for another.
It seems the idea is to hit the possible recipient and family with the stark reality of what a transplant means and that it’s not an easy thing to go through. In fact it’s downright hard! Some of the thing it requires are patience (waiting for a lung), endurance, commitment and discipline (some major pain and hard work as well as a very disciplined drug regimen and recovery program), flexibility (relocating to St. Louis for a period of at least 3 months, possibly up to a year or more and being able to run to the hospital at a moment’s notice), the ability to deal with set-backs and organ rejection -all while knowing the grim reality that this new lung only has a 50hance of lasting 5 years. If we are not ready to face these things then we may as well not continue down the road to transplant. Since Benji is quite a bit younger than the vast majority of possible transplant recipients, there’s a good possibility that all this information would have been a bit too heavy for him to handle at this time and fortunately he was preoccupied with watching a movie (with earphones) during this conversation.
The following morning was spent with the Psychologist, Child Life Specialist and Social Worker; they spent a brief amount of time allowing Benji to introduce his brothers and grandparents then sent all but Allen, myself and Benji out of the office. Allen and I then spent some time with the Social Worker while the Psychologist met with Benji; after a period of time we switched places. Some of the things they wanted to know from us were how we have managed to cope up to this point, what our source of strength has been, what kind of a support system we have, what our concerns are, how his brothers cope, etc. It was also just a good time of getting to know each other a bit and also gave us an opportunity to bring up some of our concerns and hear their perspectives.
While it technically would not have been necessary to take the other boys along, as there were no formal evaluations done with them, they discussed with us the importance of the entire family being involved in the transplant process since it tremendously affects their lives as well. It is very important that they have an understanding of what we’re talking about when we talk about “St. Louis” or to be able to visualize the different team members when we talk about them.
Part of the afternoon schedule was meeting with the Transplant Nurse Coordinator and the Nurse Practitioner for “teaching.” Here again they went over in detail what all is involved in the transplant process: pre, during and post transplant. Among the obvious were things like what the scar would look like, how many tubes would be in his chest after surgery and an entire list of medications he would be on or possibly be on after transplantation.
The last morning was more testing for Benji and in the afternoon we met with the Financial Coordinator and had what is called an “exit interview.”
The exit interview was with the Transplant Nurse Coordinator and the Pulmonologist and was basically the time for them to go over the results they’d gotten from Benji’s testing and to discuss any of their concerns as well as a chance for us to ask any final questions. Their report was that Benji didn’t need a transplant at this time but it would be a good idea, if he’s approved by the team, to get him started on the list.
The test results they had received by that point did not show anything that would keep him from being able to have a lung transplant or being listed, however, the rare Atypical mycobacterium and the Aspergilla (fungal bacteria) that Benji has in his lungs would become a problem if either of them became antibiotic/medication resistant. As of now they are not resistant but if they would become so, transplantation for Benji would no longer be an option. (The reason for this is that because the surgery is such a “bloody” procedure there is no way to contain these bacterium in his lungs, they would get into his blood stream and because of the immunosuppressant drugs he would be on, he would not be able to fight off the infection.)
The only thing they found that was unexpected was a blood clot on the inside of the right atrium of his heart. The clot was attached to the outer wall of the right atrium which is the portion of the heart that pumps blood to the lungs. From their point of view, this was also not something that would preclude Benji from having a transplant however it is good that the surgeons be aware of this at the time of operation so they are more careful to not accidentally dislodge it. As to how to deal with this now, their plan was to refer it to our Riley Doctor and she would let us know what we should do about it. I asked if this is something that could cause sudden unconsciousness or death and was told that while this was not their area of expertise, they didn’t believe that to be a problem but that the real danger was in the clot dislodging and traveling to the lung where it would cause damage to the lung. (Something Benji obviously doesn’t need!) This is what is called a pulmonary embolism and we were told to watch for symptoms such as marked increased shortness of breath or decreased oxygen levels and chest pain but were also told if we notice anything noticeably unusual we should call an ambulance. As of right now, we are still waiting for the Riley Cardiologist to receive and review the CD at which point our doctor will let us know what the next step is.
The last thing we did was go over to the Ronald McDonald House and complex. Next to the original house they have built 8 new independent apartments for long term stays, specifically with transplant families in mind. They are beautiful 2 bedroom apartments and the 2 buildings are surrounded by an iron fence with an electronic gate. The idea of Benji and I (Cindy) moving to a big new city alone (alone at least for extended periods of time) looks very different in this context. Though they aren’t free the cost is only $750.00/month and the apartments come fully furnished. (We were told that the average cost of independent apartments would be nearer $2000.00.) I believe God also blessed us with a little experience to help give me an idea of the type of support we would probably receive in these surroundings. When someone commented on the fact that we could hear a young child crying in the apartment below us, the manager responded with, “Oh that’s Josh, he just had his first day of chemo and is having a pretty hard day.” That said it all!

Some of the new things we learned or had confirmed:

*St. Louis Children’s Hospital is the leading Pediatric lung transplant center in the world. They did their first lung transplant in 1990 and currently have done just over 300.

*The longest living recipient had his transplant 18 years ago.

*Benji does not need a transplant at this time. Transplantation normally occurs when the recipient’s PFT’s are in the low 20’s (again, Benji’s have been in the high 30’s to mid 40’s); there are however some other things that could factor into the decision of “when it’s time.”

*All lung transplant recipients eventually develop a disease called Bronchiolitis Obliterans. It is a fatal disease and it has still not been discovered why this happens nor how to keep it from happening but it develops in all recipients at different rates and different severities.

*The one year survival rate is approaching 85after that it decreases each year and by the 5th year is around 50 They don’t have any percentages to give us for subsequent years.

*We want to hang on to Benji’s natural lungs and keep them as healthy as possible for as long as we can, transplantation is only done as a last resort.

*There is a possibility of re-transplantation if needed and if the recipient is healthy enough.

*There is also a possibility of what is called Living Donor Transplants. This is when 2 adults donate about 20f the lower portion on one lobe of their lungs to create one set of lungs for the recipient. Although rarely done it does becomes an option if the recipient cannot survive long enough for a cadaveric lung (lung resulting from someone’s brain death) to become available.

*The idea that we would not have to relocate and Benji would be able to fly in at the time of transplant was nixed and after hearing the dangers involved with doing it that way, we wouldn’t want to do it anyway.

*There is still a shortage of donor lungs; in fact the shortage is becoming greater, so the process is on a “first-come-first-serve” basis. This is why they want to get his name on the list now so that he would have accrued some time when he gets to the point of needing one. When he turns 12 the criteria changes; at that point whoever needs it most gets the lung. (When I asked the surgeon why this was, he said, “Good question!” then went on to say that this policy might be changing in the near future.)

*The rare bacteria and the Aspergilla (a fungus) that are in Benji’s lungs are currently not a problem because they have not become resistant to medications; however, if they ever would become resistant transplantation would no longer be an option.

*The stark reality of how difficult this process will be!

Benji is probably less excited about the idea now then before we left, however, it likely that as his health deteriorates and his “quality of life” decreases the idea of a new lung will look much more appealing! He is aware that people know we went to St. Louis and that we are talking about what happened with them; he seems to be ok with that.

Continue to remember us in your prayers!

Tuesday, June 13, 2006 8:24 PM CDT

Sunday, June 4, 2006 8:33 PM CDT

Hello everyone,
Benji was at Riley again for 6 days to try to increase his PFT. He had more infection in his lungs and his cough was worse as well. I was planning to go down with Benji on Saturday morning and Cindy was going to come home to get ready to go to St. Louis. Early Saturday morning Cindy called and said they are coming home and that I didn’t need to go down. (Pleasant surprise!) Benji seems to be doing better, his cough is quite a bit better and he seems to be in good spirits.
We are in St Louis, Mo now for our first visit with the doctors for a consultation on Lung Transplant. We arrived today about 6:00 PM
Mo time and are just getting situated in our rooms. Cindy’s Mom and Dad came along for moral support and to help us process all of the info so we can make an educated decision on whether we move ahead with this or not. We will be leaving The Haven House where we are staying (almost like a Ronald McDonald House) around 7:15 AM tomorrow morning to go to the hospital.
Pray for us as we speak to the doctors and ask questions. Pray that the Lord will help us understand and comprehend what they are saying and that he would lead us in our decision making.
Benji has been somewhat excited about coming down here. I don’t know if it’s because it is something new or if he has resigned himself to the fact that we are pursuing this. Pray for him as he processes all of this in his mind and with us. That we can be the support he needs and the strength that he doesn’t have. Pray that we can be real to him but also be his strength at times when things look big to him.
I was a part of a benefit auction Friday PM before coming down here for my brother-in-law (Ervin Raber, my sister’s husband) He is having as kidney transplant. It looks like there was quite a bit of funds raised for them. Thanks to all of you who helped and donated!! You can be praying for them as they prepare for his surgery on June 16th .
Thanks for all your support and friendships!!

Allen

Saturday, May 6, 2006 9:06 PM CDT

Hello everyone,
This is long overdue again since Benji has been home since April 25th. Benji keeps improving a little each day with his coughing and his energy level. He has been back in school everyday this week except Wednesday which is the day he usually stays home to catch up.
We went to Riley on Wednesday for a check up on his ears. He seems to have lost quite a lot of his hearing in the one ear and the high pitch tones on the other ear. The Dr’s want to do a CAT Scan the next time we go down to see if they can figure out why he is losing the hearing.
Benji has really enjoyed his baseball games since he is back, this is the highlight of his summer but he gets very tired by the end of his games. We are thankful that he feels well enough to play ball and get the exercise that he needs.
We will try to update this when we go to St Louis for our evaluation starting June 5th. We will try to keep you posted what we find out from the Dr’s there.
Thank you for all your prayers and support! I would also like to thank all the ladies that brought in food for me and the boys while Benji and Cindy were gone. Bye for now… Allen

Saturday, April 22, 2006 6:17 PM CDT

Hello All,

Sorry to have taken so long, once again, to update you; for some reason I wasn’t able to upload what I needed to until today.
This is Saturday afternoon and Jerry and Corine and their girls just left here. They were on their way to southern Indiana for her neices graduation and stopped in to see Benji. Of course Benji enjoyed that!
We came in expecting a routine, 2-week stay and Monday it will be 2 weeks that we’ve been here. On Thursday we were told that we might be able to go home on Saturday morning (a little short of 2 weeks) if all went well. Unfortunately Friday morning Benji spit up quite a bit of fresh blood in his mucous so the doctors decided they wanted us to stay a little longer. As of right now, we’ll possibly go home on Monday.
We’ve had some really good news this week; on Tuesday Benji’s PFT’s were 45 nd 46the highest they’ve been since last June! I was so excited!! I really had never expected to see his numbers that high again (at least not with these lungs)and am so grateful to God for this improvemnt! Friday’s PFT’s were again, 46BR> This visit is a little confusing, while his lungs sound pretty good and his PFT’s are this high, his chest is still quite tight and he’s having a difficult time coughing mucous out. Last evening, after his last treatment, he coughed out an awful lot of mucous; more than he has for a long time. Anytime he can get that mucous out, the better. Maybe the IV’s are contributing to this.
Last weekend Allen and the boys came down; Benji was so excited he could hardly get to sleep on Friday night. (They didn’t come until Saturday.) He sure enjoyed having them here; Cory even slept in his bed with him. Allen had thought he’d come down again this weekend but when they started talking about us going home in the next few days, he decided to hold off until Monday.
Today was the Little League “Jamboree” (kick-off); this is the second year in-a-row that Benji had to miss it because he was in the hospital. That was pretty difficult for him to deal with. My heart just goes out to him for all the disappointments he’s had in his short life, because of his disease. I would also have liked to be there; even if Benji couldn’t, Cory also had his first game today and I would have loved to watch him. I really miss the other boys and Allen when we’re down here.
At this point, the plans are to not go to St. Louis until the first week in June; there was a conflict in the date and we needed to change it. I suppose that will work better for the other boys anyway because school will be out.

Continue to remember us in your prayers!

Cindy

(If you want to know more about St. Louis and what that means, see the April 14th journal entry.)

I just saw the "journal history" page and am quite confused with all the repeats. So sorry - just ignore the duplicates!

P.S. Oh yeah, unless you read Joann Stutzman's guestbook entry, you might not know that our little friend Ryan got to go home last Friday. I spoke to Joann this week and he seems to be doing better. PTL

Friday, April 14, 2006 6:58 AM CDT

I’m not sure what happened but I had added a detailed update on April 8 and just discovered today that it wasn’t there anymore. I went ahead and put in today's update and the one I'd put in on the 8th is below it.

Friday, April 14, 2006

Benji and I have been at Riley since Monday; he's not doing too badly, (for him). We were sorry to miss Cory's birthday on the 12th but it sounds like he had a good time without us.

We've had a very unusual experience this time; on our way down on Monday Allen called to tell me that some of our friends, whom many of you know-Loren and Joann Stutzman, were on their way down to Riley with their 2 year old son. They arrived here soon after we did and have been here all week.

We were hoping they would get to come to 3A with us but when the finally got placed in a room around midnight Monday evening, they got sent to 2B. Imagine my delight and surprise the next day when I saw Joann being given the tour of 3A! They needed to move Ryan to an isolation room so they moved him up here.

This is not a strange place for us anymore and we feel pretty much at home here and while we of course wish Ryan didn't need to be here at all, since he had to be, I've really enjoyed having a friend next door to chat with throughout the day.

We're hoping Ryan's condition is not too serious (though he's felt much sicker than Benji this week) and there's a possibility he might get released this afternoon.

We don't know yet when Benji will be going home but I'm hoping since he came in before he got so bad, maybe he won't have to stay longer than 2 weeks!

Allen and the boys are coming down on Saturday and I guess we'll spend Easter down here. (If Ryan is still here, our boys would be delighted if the Stutzman kids came too - all of our boys are classmates or friends with 3 of their boys).

I'll try to keep you updated and thanks for checking,

Cindy

To all of you,

We are so sorry for the long delay in updating you on Benji! It’s really ridiculous that we still have Christmas pictures up! (Although, I did just notice the other day that someone around here still had their Christmas decorations up, so I’ll use that to make myself feel better.) We have wanted to update you on Benji’s health for quite a while now but aside from the fact that once we get back home from the hospital, we get so involved with our lives and kind of forget about the website, we have also been waiting until we have a bit more information to share. Unfortunately we still don’t have that information but decided to share what we do know.
As most of you know, Benji spent a total of 5 weeks at Riley the end of last year. For the first time, Benji and I (Cindy) experienced Christmas separated from the rest of the family. It was especially difficult for
Benji to not be able to spend the night with all of his cousins at Grandma and Grandpa Troyer’s house; for myself, as long as Benji had to be in the hospital, I had no desire to be home but it was awfully difficult to see his broken heart at the thought of what he was missing.
Before Benji was released, his Dr. asked to meet with Allen and me to discuss his condition. At this meeting, Dr. Howenstein told us she felt it was time to begin the process of having Benji put on the Lung Transplant “List”. What this meant was that, with our permission, she would be sending all of Benji’s records to St. Louis Children’s hospital where, if accepted and if necessary, the transplant would be done. This would not mean that a transplant would be immanent, but that if/when he came to the point of needing one, everything would already be in place to proceed.
In January, at Benji’s 2 week checkup, we met with more of the medical team to help answer some questions we might have; they were able to answer some of our questions but left most of them to be answered by the medical team at St. Louis. What we did come to understand was that it would take around a month to get all of Benji’s records transferred and then, once Benji’s records were received by St. Louis, they had the option to turn him down or to take the process a step further by setting up an appointment to have the entire family come to St Louis for an evaluation. We know very little about this except that we were told that the entire family, along with Benji, would need to have a psychological evaluation. (We’ll be able to explain this to you much better once we have gone through it.)
At that time we gave our consent to begin the process and began anticipating a call from St. Louis in the near future. Benji, however, knew nothing about the transplant and while we did share personally with some of you, we didn’t feel good about saying anything in a public way until he knew about it.
It felt pretty overwhelming for us to think of how to share something like this with him. Thank God for wonderful doctors and people who are experienced with these kinds of things!! Dr. Howenstein asked us if she could share it with him at our visit, the first of February, as just kind of a “matter-of-fact thing” that since they’d tried everything else with him, it was now time to move on to the next step. It felt very good to us to let her take charge of that and feel like she did a tremendous job of presenting it to him!
She spoke to him almost as if he were an adult and told him that she and his Mom and Dad had been talking about some things and wondered if he knew of anyone who’d had a lung or heart transplant. Of course we reminded him of Kathryn’s grandson and about his uncle who is on the list for a kidney transplant. She also told him a story of another patient she had who had been put on the “list” when he was 9 years old (Benji is 8) and then got better for a while. It was actually 6 years before he needed the transplant! He just had it done last Thanksgiving and was 15 years old when he had it done.
Benji did not receive the news with much enthusiasm but we felt Dr. Howenstein was very wise in how she handled the situation; she made it clear that going to St. Louis and even being put on the “list” did not mean he was going to have a transplant but just that we would be talking to them about it. He gave a negative response regarding having the transplant so Dr. Howenstein asked him if it’d be ok if she’d just send the really long letter she’d written about him to St. Louis. He agreed that would be ok and that’s how it was left.
Benji does not talk about his thoughts or feelings about all this very much so it’s really difficult to know what he’s feeling or thinking; he does however give us clues now and then. Our plan was to let Dr. Howenstein bring up the issue then we would be available to assist in answering questions and processing things afterward. Since that time Benji has not shown any interest in talking about this, even with us or his brothers; however, I had told him a few weeks ago that one of us would need to tell his brothers about us visiting St. Louis sometime soon and asked him if he’d like to do it or have us do it. He didn’t respond much so I let it drop and just last week Cory asked what this St. Louis thing was about and before I could say anything, Benji, very matter-of-factly, said “I’m going to have a lung transplant.” I was quick to assure Benji that going to St. Louis didn’t necessarily mean that, that we were just going there to talk about it for now. He just kind of agreed and shrugged it off. As we know Benji, this means he has resigned himself to this and is beginning to accept the fact that this may need to happen. We don’t believe however, that this is something Benji is ready to discuss with others or in any kind of public way at this time.
Back to the story Dr. Howenstein told us about the boy who’d been on the transplant list for 6 years: we don’t know what this story meant for Benji but it was quite encouraging for Allen and me! First of all, the fact that he didn’t need the transplant for 6 years after being put on the list was very exciting. How awesome if Benji could hold off until he’s 14! Secondly, this boy’s last “PFT” (pulmonary function test) was in the low 20’s, Benji’s is still in the high 30’s and at times the low 40’s; we don’t really know how much that means but up to this point we’d never heard any numbers in conjunction with a transplant. Thirdly was what she had to say about this boy’s PFT’s after his transplant: we had been told that a typical lung function with a transplanted lung is usually only in the 50’s or 60’s, sometimes into the 70’s, but rarely. Although the doctor said this boy’s first weeks were rather rough, his first PFT that he did after his transplant was 75%! Just that day she’s received a letter saying that his next PFT was 92%! Last week when we were at Riley, she said his latest was 102%! These numbers are incredible and we are well aware that he is the exception, not the rule; however, we also know that the longer we can hold off on the transplant, the more medical technology will have advanced and will make Benji’s chances so much better!
. Unfortunately, most of the information we have received so far, regarding a lung transplant are not what we’d like to hear. Unlike kidney, liver and even heart transplants, lung transplants are much more unlikely to be successful. Currently only 50% of lung transplant recipients make it 5 years. I guess there is the option to do another transplant if the first one is not successful, but that depends on the recipient being strong enough to go through another surgery.
A bit more to update you on Benji’s current health; Benji’s last two visits to Riley, in February and March, were the first visits in more than a year, that I was able to go without the stress of planning to stay, in case they decided to keep him. Each time we would have a checkup (which was every 3-6 weeks) I would need to make sure that I didn’t leave anything undone that needed to be done in the next 2 weeks; that included church, school, business, other various things, and of course home. I’d try to make sure the wash, etc was done and of course, needed to pack to stay for 2 weeks. Then of course, if they didn’t keep him, I’d need to unpack everything again when we got home. Since last October this packing has included a few more things: I discovered I was allergic to some pretty key foods which were contributing to my breathing problems; these include wheat, dairy and egg whites. So now, when I pack to go to the hospital, I also have to do quite a bit of baking and food preparation since I have to take all my own food. (There is almost nothing at the hospital that is safe for me to eat!) Aside from just the relief that comes when Benji’s health is better, what a blessed relief it was to take Benji for his checkup, certain that he was coming back home!!!
At his February visit, his PFT’s were up into the low 40’s, the first since last November and the Drs. couldn’t quit exclaiming at how wonderful he looked. At the March visit, we expected to bring him home again but also knew he was not doing as well. In fact, his PFT’s were down again and Dr. Howenstein put him on an oral antibiotic for 2 weeks; if at the end of that time he hadn’t improved he’d need to be hospitalized again. As of today, he will be admitted to Riley tomorrow, Monday, April 10th for another round of IV’s unless he seems to get worse or if he coughs up more blood, then we will still go down today, Sunday.
While we’d of course prefer to not have to go, we’re actually grateful that this is the first time he’s had to be admitted since December; last year this time, he was being admitted an average of every 6 weeks. We don’t know for sure what causes the ups and downs in his health, we are just always trying to do what we feel is best for Benji’s health. One of the things we have been doing differently for the last few months is keeping Benji home from school on Wednesdays (as a day to catch up on sleep and relax) and have also been much less rigid with his schedule. If for some reason we can’t get him to bed in time, we let him sleep the next morning and take him to school when he wakes up or skip Sunday School if it’s a Sunday. This seems to have been helpful.
A few weeks ago Allen and I had the opportunity to get away alone for 5 days; this is not something that has happened much lately. It’s pretty difficult to ask anyone to take on the responsibility of Benji’s care for any length of time but we are blessed to have family who are willing to do it and we decided that since Benji was doing better at that time, we’d take advantage of it. We made some quick plans and spent some much-needed time together enjoying the sunshine in Cancun.
Our family is currently scheduled to go to St. Louis for a 3-day visit either the last week in April or the first week in May. At this time, my parents, Harley and Betty Troyer, are planning to go with us. Since Benji is going to be admitted today or tomorrow, this means he would probably be released just before we go to St. Louis. After our visit to St. Louis, we’ll probably have more information to share but we just wanted to update you all, up to this point.
Please remember us in prayer as our whole family processes this next step, especially for Benji and his brothers, that they would be able to deal with this in a healthy way. For Allen and I: that we would know how to best help each other and our sons process this and for clear thinking as we make some huge decisions regarding Benji’s health. Also pray for us that we continue to trust God through all this; the most difficult times are those times when we see him suffering and wonder why he has to go through this.

Also, never quit praying for or believing in a miracle for Benji. We don’t know what God’s will is in all this but we have no doubt HE IS ABLE to heal Benji!

Thank you for your continued prayers and all the ways you express your love and concerns!

Allen and Cindy Eash

Friday, April 14, 2006 6:58 AM CDT

Sunday, April 9, 2006 9:07 AM EDT

To all of you

We are so sorry for the long delay in updating you on Benji It’s really ridiculous that we still had
Christmas pictures up (Although, I did just notice the other day that someone around here still had their Christmas decorations up, so I’ll use that to make myself feel better.) We have wanted to update you on Benji’s health for quite a while now but aside from the fact that once we get back home from the hospital, we get so involved with our lives and kind of forget about the website, we have also been waiting until we have a bit more information to share. Unfortunately we still don’t have that information but decided to share what we do know.
As most of you know, Benji spent a total of 5 weeks at Riley the end of last year. For the first time, Benji and I (Cindy) experienced Christmas separated from the rest of the family. It was especially difficult for
Benji to not be able to spend the night with all of his cousins at Grandma and Grandpa Troyer’s house; for myself, as long as Benji had to be in the hospital, I had no desire to be home but it was awfully difficult to see his broken heart at the thought of what he was missing.
Before Benji was released, his Dr. asked to meet with Allen and me to discuss his condition. At this meeting, Dr. Howenstein told us she felt it was time to begin the process of having Benji put on the Lung Transplant “List”. What this meant was that, with our permission, she would be sending all of Benji’s records to St. Louis Children’s hospital where, if accepted and if necessary, the transplant would be done. This would not mean that a transplant would be immanent, but that if/when he came to the point of needing one, everything would already be in place to proceed.
In January, at Benji’s 2 week checkup, we met with more of the medical team to help answer some questions we might have; they were able to answer some of our questions but left most of them to be answered by the medical team at St. Louis. What we did come to understand was that it would take around a month to get all of Benji’s records transferred and then, once Benji’s records were received by St. Louis, they had the option to turn him down or to take the process a step further by setting up an appointment to have the entire family come to St Louis for an evaluation. We know very little about this except that we were told that the entire family, along with Benji, would need to have a psychological evaluation. (We’ll be able to explain this to you much better once we have gone through it.)
At that time we gave our consent to begin the process and began anticipating a call from St. Louis in the near future. Benji, however, knew nothing about the transplant and while we did share personally with some of you, we didn’t feel good about saying anything in a public way until he knew about it.
It felt pretty overwhelming for us to think of how to share something like this with him. Thank God for wonderful doctors and people who are experienced with these kinds of things Dr. Howenstein asked us if she could share it with him at our visit, the first of February, as just kind of a “matter-of-fact thing” that since they’d tried everything else with him, it was now time to move on to the next step. It felt very good to us to let her take charge of that and feel like she did a tremendous job of presenting it to him
She spoke to him almost as if he were an adult and told him that she and his Mom and Dad had been talking about some things and wondered if he knew of anyone who’d had a lung or heart transplant. Of course we reminded him of Kathryn’s grandson and about his uncle who is on the list for a kidney transplant. She also told him a story of another patient she had who had been put on the “list” when he was 9 years old (Benji is 8) and then got better for a while. It was actually 6 years before he needed the transplant He just had it done last Thanksgiving and was 15 years old when he had it done.
Benji did not receive the news with much enthusiasm but we felt Dr. Howenstein was very wise in how she handled the situation; she made it clear that going to St. Louis and even being put on the “list” did not mean he was going to have a transplant but just that we would be talking to them about it. He gave a negative response regarding having the transplant so Dr. Howenstein asked him if it’d be ok if she’d just send the really long letter she’d written about him to St. Louis. He agreed that would be ok and that’s how it was left.
Benji does not talk about his thoughts or feelings about all this very much so it’s really difficult to know what he’s feeling or thinking; he does however give us clues now and then. Our plan was to let Dr. Howenstein bring up the issue then we would be available to assist in answering questions and processing things afterward. Since that time Benji has not shown any interest in talking about this, even with us or his brothers; however, I had told him a few weeks ago that one of us would need to tell his brothers about us visiting St. Louis sometime soon and asked him if he’d like to do it or have us do it. He didn’t respond much so I let it drop and just last week Cory asked what this St. Louis thing was about and before I could say anything, Benji, very matter-of-factly, said “I’m going to have a lung transplant.” I was quick to assure Benji that going to St. Louis didn’t necessarily mean that, that we were just going there to talk about it for now. He just kind of agreed and shrugged it off. As we know Benji, this means he has resigned himself to this and is beginning to accept the fact that this may need to happen. We don’t believe however, that this is something Benji is ready to discuss with others or in any kind of public way at this time.
Back to the story Dr. Howenstein told us about the boy who’d been on the transplant list for 6 years: we don’t know what this story meant for Benji but it was quite encouraging for Allen and me First of all, the fact that he didn’t need the transplant for 6 years after being put on the list was very exciting. How awesome if Benji could hold off until he’s 14 Secondly, this boy’s last “PFT” (pulmonary function test) was in the low 20’s, Benji’s is still in the high 30’s and at times the low 40’s; we don’t really know how much that means but up to this point we’d never heard any numbers in conjunction with a transplant. Thirdly was what she had to say about this boy’s PFT’s after his transplant: we had been told that a typical lung function with a transplanted lung is usually only in the 50’s or 60’s, sometimes into the 70’s, but rarely. Although the doctor said this boy’s first weeks were rather rough, his first PFT that he did after his transplant was 75 Just that day she’s received a letter saying that his next PFT was 92 Last week when we were at Riley, she said his latest was 102 These numbers are incredible and we are well aware that he is the exception, not the rule; however, we also know that the longer we can hold off on the transplant, the more medical technology will have advanced and will make Benji’s chances so much better
. Unfortunately, most of the information we have received so far, regarding a lung transplant are not what we’d like to hear. Unlike kidney, liver and even heart transplants, lung transplants are much more unlikely to be successful. Currently only 50f lung transplant recipients make it 5 years. I guess there is the option to do another transplant if the first one is not successful, but that depends on the recipient being strong enough to go through another surgery.
A bit more to update you on Benji’s current health; Benji’s last two visits to Riley, in February and March, were the first visits in more than a year, that I was able to go without the stress of planning to stay, in case they decided to keep him. Each time we would have a checkup (which was every 3-6 weeks) I would need to make sure that I didn’t leave anything undone that needed to be done in the next 2 weeks; that included church, school, business, other various things, and of course home. I’d try to make sure the wash, etc was done and of course, needed to pack to stay for 2 weeks. Then of course, if they didn’t keep him, I’d need to unpack everything again when we got home. Since last October this packing has included a few more things: I discovered I was allergic to some pretty key foods which were contributing to my breathing problems; these include wheat, dairy and egg whites. So now, when I pack to go to the hospital, I also have to do quite a bit of baking and food preparation since I have to take all my own food. (There is almost nothing at the hospital that is safe for me to eat ) Aside from just the relief that comes when Benji’s health is better, what a blessed relief it was to take Benji for his checkup, certain that he was coming back home
At his February visit, his PFT’s were up into the low 40’s, the first since last November and the Drs. couldn’t quit exclaiming at how wonderful he looked. At the March visit, we expected to bring him home again but also knew he was not doing as well. In fact, his PFT’s were down again and Dr. Howenstein put him on an oral antibiotic for 2 weeks; if at the end of that time he hadn’t improved he’d need to be hospitalized again. As of today, he will be admitted to Riley tomorrow, Monday, April 10th for another round of IV’s unless he seems to get worse or if he coughs up more blood, then we will still go down today, Sunday.
While we’d of course prefer to not have to go, we’re actually grateful that this is the first time he’s had to be admitted since December; last year this time, he was being admitted an average of every 6 weeks. We don’t know for sure what causes the ups and downs in his health, we are just always trying to do what we feel is best for Benji’s health. One of the things we have been doing differently for the last few months is keeping Benji home from school on Wednesdays (as a day to catch up on sleep and relax) and have also been much less rigid with his schedule. If for some reason we can’t get him to bed in time, we let him sleep the next morning and take him to school when he wakes up or skip Sunday School if it’s a Sunday. This seems to have been helpful.
A few weeks ago Allen and I had the opportunity to get away alone for 5 days; this is not something that has happened much lately. It’s pretty difficult to ask anyone to take on the responsibility of Benji’s care for any length of time but we are blessed to have family who are willing to do it and we decided that since Benji was doing better at that time, we’d take advantage of it. We made some quick plans and spent some much-needed time together enjoying the sunshine in Cancun.
Our family is currently scheduled to go to St. Louis for a 3-day visit either the last week in April or the first week in May. At this time, my parents, Harley and Betty Troyer, are planning to go with us. Since Benji is going to be admitted today or tomorrow, this means he would probably be released just before we go to St. Louis. After our visit to St. Louis, we’ll probably have more information to share but we just wanted to update you all, up to this point.
Please remember us in prayer as our whole family processes this next step, especially for Benji and his brothers, that they would be able to deal with this in a healthy way. For Allen and I: that we would know how to best help each other and our sons process this and for clear thinking as we make some huge decisions regarding Benji’s health. Also pray for us that we continue to trust God through all this; the most difficult times are those times when we see him suffering and wonder why he has to go through this.

Also, never quit praying for or believing in a miracle for Benji. We don’t know what God’s will is in all this but we have no doubt HE IS ABLE to heal Benji

Thank you for your continued prayers and all the ways you express your love and concerns

Allen and Cindy Eash

Wednesday, December 28, 2005 5:52 PM CST

Hello,
We are all home again! Benji and Cindy came home late last night about 11:00. We were up past midnight until Home Health Care came out to set us up with his IV medicine and oxygen. He will be using oxygen during the night and during the day as needed. This will be another adjustment for us as we get used to using the oxygen and the monitor to let us know if he needs it or not.
Keep praying for us as we continue to move forward with treatment and determining what God’s will is in all of this.

Allen

(Some thoughts from Cindy:)
It feels good to be home again but along with that come other adjustments. I told the boys this evening that the one thing I hate about coming home is having to deal with their fighting; since Benji's alone most of the time at the hospital and he doesn't fight with himself (smile) that's one of the benefits of being there with him.

We were sent home on the same regimen of medications that we were doing in the hospital until our checkup next Wednesday, January 4th. At that point the Drs. should have more test results and will decide whether or not to change them.

I'm feeling the need once again to get some things done here this week so that I'm prepared to stay if they decide they need to admit Benji again. That feels pretty overwhelming at times!

Benji's PFT's had been slightly up last Thursday but were slightly down again on Tuesday. It just seems like he just can't get them into the upper 40ange.

Thanks so much to all of you who continue to check on Benji. especially those of you who have sent us notes through the guest book; it's always such an encouragement to open that page and find new messages!

To repeat what Allen said, we very much appreciate your prayers as we continue to determine what is best for Benji and the family.

Happy New Year!]
Cindy

Friday, December 23, 2005 4:48 PM CST

I’m now about 99% sure we’ll be spending Christmas down here. Unless the head “I.D.” doc decides unexpectedly to release Benji before tomorrow morning, we’ll be here until at least Tuesday. I’m guessing they’re waiting until they receive some more test results so they can better determine the seriousness of whatever it is that Benji’s dealing with.

Benji was off oxygen all day yesterday until last evening; this was the first time he has ever asked for oxygen but he said he thought he needed it. The first week we were here I had asked him if he could feel the difference when he was on oxygen and he had said “no,” so I was surprised when he said he needed it. When I asked him why he felt he needed it he said it was because he felt like he couldn’t breath very good. I then asked him if he really did feel like it helped him and he said it helped him breath better. We talked then about the fact that we’ll be “going home on oxygen” and I said it might help him feel better at home and school when he feels like he can’t breath right. I was surprised when he responded that it would be embarrassing to use it. This is the first he has expressed reservations about any of his medical treatments being seen by others; I guess he’s getting to “that age.” Hopefully we’ll be able to work through his self-consciousness so he can feel as good as possible. (He was on oxygen all last night and most of today.)

My family will be getting together at Mom and Dad’s this evening for our yearly fondue supper. I wish we could both be there but since Benji can’t be there I really feel no pull to be there either. I don’t think I could enjoy being there at all with Benji down here. So, Benji and I will roast marshmallows and watch a movie together down here.

You all (or as my cousin Cheryl from Mississippi says in the guestbook, “yall”) have a wonderful Christmas and unless we get some unexpected news tonight, we probably won’t have anything new to add until after the weekend.

Merry Christmas!

Cindy

Thursday, December 22, 2005 12:49 AM CST

Well it’s looking dimmer that we will be home for Christmas.

Tuesday evening and Wednesday noon Benji had fevers again. He’s been on oxygen most of the time again since Monday. The Drs. are sounding less hopeful that we’ll be able to come home for Christmas although it’s still not ruled out completely. Dr. Howenstein is supposed to be coming up to the room sometime this afternoon and after that we might know more. Benji was taken off his steroids on Tuesday because they suppress his immune system and hadn’t seemed to make any difference in his PFT’s. He also had another chest x-ray to look for any changes and they’re doing or have done all kinds of other testing; so far all the results are negative, not showing anything new, or pending. I think the Pulmonologists are pretty stumped and are kind of depending on the Infectious Disease Docs to come up with some answers. The culture from his Bronch last week not only didn’t give them any new answers, it didn’t grow anything, not even the stuff they know to be in his lungs. So…we’re still in limbo. Benji will be going down this afternoon for another PFT; hopefully he won’t be running a temp at that time and can show some improvement.

Tuesday evening Benji had a couple more surprise visitors; Stan Peachey and Rod Bontrager were down here to work on Carlin Yoder’s sister’s house and ran over to see Benji. (I had known they were coming but Benji didn’t.) Benji had a lot of fun with them as those of you who know Rod and Stan won’t find hard to believe. (See photo page) Just before leaving they prayed with Benji which was very special.

Also on Tuesday I picked up a small table-top Christmas tree for our room. I had begun to think we might not be coming home this week and wanted to make it feel a little more “Christmasy” for Benji. I got some colored lights and miniature candy ornaments thinking Benji would enjoy helping me decorate it; I was wrong. I guess that’s just not his thing because he wasn’t a bit interested in it. The next day I decided to make it a little more appealing for him and picked up some little items that I could wrap up and put under the tree for him. I have to say, his overall interest in the tree has certainly picked up! (smile)

It was really difficult for me to have to tell Benji yesterday that there’s now a good chance we won’t be able to go home for Christmas, it was very hard news for him to hear but I wanted to prepare him before Friday. The most difficult thing for him to accept is that he won’t be able to go to Grandpa Troyer’s on Friday evening and be there all day Saturday with them AND especially that he won’t be able to spend the night there with his cousins, on Friday night. His strength really amazes me! After he shed some tears (with Mom) he wiped his tears and seemed to accept it. He has tearfully brought it up a couple times since then but seems to be resigned to the idea. If we do have to stay down here I’m going to try to make Friday night and Saturday as special for him as possible, he really likes roasted marshmallows and I suggested today that I will try to find a way to roast some for him in the room on Saturday. I have also thought that maybe his cousins his age might be able to come down again one night next week and stay overnight with him. We are planning at this time that at least Cory (not sure about the other 2) will stay down here with him for a couple nights after Christmas.

When I know more, I’ll let you.
Until then…
Cindy

P.S. This is later this evening: I spoke to one of the Pulmonologists this evening, they're still waiting to hear from the Infectious Disease Docs before deciding on his release. She said at this point, if we do get released before Christmas, it won't be until at least late Friday night or Saturday. We are a bit more hopeful this evening since Benji hasn't had a temp today and his PFT's were up a little today!

Tuesday, December 20, 2005 3:09 PM CST

Good Morning,

It’s Tuesday morning and I have a bit more information to share. Yesterday morning Benji began complaining about hurting all over, later on he became feverish and ran a temp for a while in the afternoon. After taking Ibuprofen the temp went back down and he hasn’t had one since. However, this brings on a whole new set of questions for the docs to try to figure out. He also did PFT’s yesterday; they weren’t up at all, which was a real disappointment, but we’re not quite sure if it came from not feeling well or for other reasons.

We had a special treat yesterday; 2 of the starting lineup for the Indiana Pacers basketball team, Jeff Foster and Sarunus Jasikevicius came around to the rooms. They brought a bag with a whole bunch of goodies including an autographed Pacers t-shirt. Benji was just coming out of his fever when they came around and still wasn’t feeling so great. See the photo page for a picture of them in our room. (Notice Benji’s still rosy, feverish cheeks.)

The “Rounds” Dr. said this morning that she’s hoping we can go home by Friday but Benji’s primary care Dr., Dr. Howenstein will be the one to make that decision so we’re still waiting to hear from her. If Benji can’t be released for Christmas I’ll be staying down here with him and our immediate family will probably have our Christmas down here. It’s hard for me to get into any kind of Christmas spirit anyway; I feel so “out of it.”

I was able to go home last weekend in time for Tyler’s basketball game. On Saturday I took the boys to finish up some Christmas shopping and Sunday morning was able to go to the Musical at church that Cory was in. The kids did a wonderful job and Cory (of course) did great! I came back down after church and Allen, who was down here with Benji, was able to leave in time to be home for the Musical in the evening. It will be nice when we can all be together again!

Until next time…
Cindy

Friday, December 16, 2005 7:47 AM CST

Good morning,

It seems I’ve seen a bit of improvement the last few days; Benji seems more energetic and ornery and he hasn’t been coughing quite as much. On Tuesday he was put on steroids which may be part of the reason he’s been able to be off of oxygen now since Monday night, except during the night on Wednesday. The steroids are to control inflammation and open his airways.

Yesterday (Thursday) morning Benji had a bronchoscopy/lavage. The bronchoscopy consisted of going in through the nose, down the trachea, into the lungs, taking pictures on the way down and back and getting a sputum culture from deep in the lungs; the lavage is simply washing the mucous out of the lungs while being down there. (The wash can only get into the larger areas of the lungs, not into the small airways.)

They only needed to put Benji into a light sleep and I only needed to be out of the room for 15 minutes. It was however something Benji was pretty apprehensive about. While Benji always gets fearful and anxious about getting “poked” with needles, he doesn’t typically struggle with other things. The fear he experiences regarding needles is a fear about an expected action, he seems to experience a different and deeper fear and anxiety whenever he does this kind of procedure or a surgery most likely associated with being put to sleep and the unknown. I was so thankful to be able to pray with him first and stay with him until he drifted off.

Afterward the doctor said she had seen a lot of pus (indicating infection) all the way down but after the lavage, it looked clean. The sad part about cystic fibrosis is that this is only temporary; it won’t take long for the mucous and pus to come back. Later in the day I asked Benji if he could tell a difference with feeling like he has something in his throat that he needs to get out, he said “yah, I don’t feel anything down there!” To clarify I asked him if he usually feels stuff down there and he answered, “yes but now I don’t feel anything.” It make one think that they should just do this on a regular basis, but while I don’t remember the exact reason I was given, I know that I had asked about this a year ago and was given a reason why this is medically not advisable.

Originally the Drs. had thought we would do the bronch when we were first admitted but since they got some really good sputum cultures from Benji without it, they decided not to do it at that time; however, since he wasn’t improving, they decided to do it anyway.

Yesterday, Benji twice asked to eat and on his own snacked on some honey-roasted peanuts. This is probably due to the steroids and his feeding schedule being a little messed up yesterday, but whatever the reason, it was wonderful to see!

We don’t know anything more about when we’ll be going home except that when I spoke to Dr. Howenstein on Tuesday, she talked about us being here yet next week and…when I asked her IF we needed to be here after Christmas if she thought we might be able to have a few days at home over Christmas… she did not respond with, “oh, you’ll be home by then,” her response was, “we should be able to work something out.” That’s the best idea I have or can give you as to how long we’ll be here.

I am planning to head home this afternoon for a couple nights and Allen is coming down for the weekend. I’ll come back down on Sunday. I’m again looking forward to spending some time with the other boys.

People often ask how I’m doing down here and so far, I think I’m doing quite well. It’s a totally different feeling then it was a year ago, partly because Benji doesn’t seem so sick and the fact that we’ve had a year to adjust to the reality of Benji’s condition makes this not unexpected as it was a year ago.

I’ve always got all kinds of projects I’m working on that can pass time for me while I’m here: crocheting, working on a variety of projects on my laptop and it seems I’ve now started a jewelry business down here. (smile) I love to do beading as a hobby and the nurses and staff began ordering jewelry from me, so for now, it’s not just a hobby, I’ve got orders to get out! I told them they shouldn’t let the hospital know or they might start charging me commission. (smile)

My more stressful time will probably come when we go back home. While the most difficult thing about being down here is not being with the rest of my family, the adjustment back can be surprisingly difficult; down here I’m only responsible for myself and Benji and our little room. When I go back home, it’s suddenly being responsible for four more people, taking care of a home, local activities to go to, boys’ basketball games to attend, shopping to do, committee meetings, etc, etc. I think these times are probably more stressful for Allen, he’s home doing all the things I just listed as well as keeping our businesses going and…there’s always a feeling of being pulled to be here with Benji when we’re home.

Benji also misses his brothers, he hasn’t seen them since the 6th and was asking yesterday if they’re going to come down this weekend and sleep in the room with him. He always likes that.

On Tuesday, Mom, Dad and Dale came down to visit then drove back yet to see the school Christmas program that evening; it was good to see them for a short time.

Yesterday morning, just before we left for Benji’s bronch, we had a nice surprise; Kathryn Yoder and her son Mike showed up at our door. They were down here for a checkup for her grandson Leighton Akins (who recently had a heart transplant down here) and came up to say “hi.” It’s was good to see them and wonderful to hear how well Leighton is doing! It’s always such an encouragement to us when we hear of successful organ transplants!

I need to be getting on with my day (I’ve got orders to fill – smile), so until next time…

Tuesday, December 13, 2005 8:59 AM CST

Good Morning,

I apologize to those of you who have been waiting for a new update but I’ve not had a whole lot of new stuff to report. You can assume that if there’s not been an update not a lot has changed.

Our new “we’re here at least till then” date is this Friday, December 16. Last Thursday Allen’s sister Wilma came down to stay with Benji so I could go home for the school’s Christmas program and to spend a little time with Allen and the boys on Thursday evening. Well…as you know we got a little snow that afternoon and I was glad to hear the program was cancelled because it had become obvious to me that I was not going to make it home in time for it. By the time I did get home, everyone was sound asleep so I missed out on spending time with them that evening.

The next afternoon (Friday) Allen came down and brought Benji’s “special surprise” with him: Landon Troyer and Jalen Yoder, two of Benji’s cousins that are his age came along down to spend the night in the room with Benji! I had asked one of the charge nurses if she thought that would be ok and she said she didn’t think that’d be a problem at all; I’m so glad it worked out because they created a wonderful memory. I think they all three had a lot of fun and it’s my understanding that Landon doesn’t think it’s fair that Benji “gets to be in the hospital because it’s so much fun to be here and so much fun stuff to do!” I’m guessing their days of feeling bad for Benji when he needs to be hospitalized are over!

I got to spend Friday evening at home with Aaron, Tyler and Cory whom I really enjoyed; I really miss seeing them and Allen while I’m down here. Saturday morning I went to Cory’s Bible Quiz meet; at the same time Tyler had a basketball game about a half hour away which I was disappointed to have to miss but was planning to get there in time to see at least part of Aaron’s game. I ended up missing them both because Aaron’s game was also done by the time I got there! I left from there then to come back down to Riley.

Allen had originally planned on going back home on Saturday afternoon when I got back, and taking Wilma and the boys along home. However, it ended up that Topper and Marilyn Knepp drove down to Kokomo, where Allen met them with Wilma and the boys, to pick them up and take them home, then Allen came back down to Riley. Thank you so much Topper and Marilyn! It was so nice for Allen to have a little “alone time” with Benji and for us to spend some extra time together!

Benji did another PFT on Friday which sadly was down under 40 gain. There is a possibility that it was due to poorer technique than usual. (It may have been because I wasn’t there with him,) Today, Tuesday, he’ll be doing them again so we’ll hope for some better results.

Last Wednesday evening Benji was able to go off his oxygen for the first time since being down here. He stayed off for about 24 hours then had to go back on it. Since then he’s been on it the majority of the time with periods of being off. During last night he was able to be off of it and hasn’t needed it yet this morning.

He did spit up some bloody mucous again yesterday; he’d done that a fair amount of times last week but it was usually dark colored which indicates old blood and he hadn’t spit any up for several days. However, last evening he again spit some out but it was brighter colored, which indicates new blood. The doctors are waiting to see if he spits up any more fresh blood before “doing something about it.” I’m not sure what that means but I don’t need to worry about it unless he spits up more.

Benji has been doing a tremendous amount of vomiting since we’re here. It seems like the IV antibiotics are loosening up his mucous enough to cough it out which is a good thing, the problem is that the mucous often makes him gag and the gagging make him vomit. This of course gets very old for him and is making it very difficult to gain weight; we’re constantly adjusting his feeds (right now he’s getting 2-a-day plus the night time one) to get enough calories into him without causing him to be so full that he pukes it up. He has no appetite at all when he’s in the hospital, probably because he gets so little exercise, and I have been thankful over and over for his feeding tube!

I need to be wrapping things up, it’s time to go for PFT’s. We continue to appreciate your prayers!

Cindy

P.S. My mom and dad are coming down to see Benji today and it's their 47th (I believe) Anniversary today! Happy Anniversary Mom and Dad!

Friday, December 16, 2005 7:42 AM CST

Tuesday, December 13, 2005 8:59 AM CST

Good Morning,

I apologize to those of you who have been waiting for a new update but I’ve not had a whole lot of new stuff to report. You can assume that if there’s not been an update not a lot has changed.

Our new “we’re here at least till then” date is this Friday, December 16. Last Thursday Allen’s sister Wilma came down to stay with Benji so I could go home for the school’s Christmas program and to spend a little time with Allen and the boys on Thursday evening. Well…as you know we got a little snow that afternoon and I was glad to hear the program was cancelled because it had become obvious to me that I was not going to make it home in time for it. By the time I did get home, everyone was sound asleep so I missed out on spending time with them that evening.

The next afternoon (Friday) Allen came down and brought Benji’s “special surprise” with him: Landon Troyer and Jalen Yoder, two of Benji’s cousins that are his age came along down to spend the night in the room with Benji! I had asked one of the charge nurses if she thought that would be ok and she said she didn’t think that’d be a problem at all; I’m so glad it worked out because they created a wonderful memory. I think they all three had a lot of fun and it’s my understanding that Landon doesn’t think it’s fair that Benji “gets to be in the hospital because it’s so much fun to be here and so much fun stuff to do!” I’m guessing their days of feeling bad for Benji when he needs to be hospitalized are over!

I got to spend Friday evening at home with Aaron, Tyler and Cory whom I really enjoyed; I really miss seeing them and Allen while I’m down here. Saturday morning I went to Cory’s Bible Quiz meet; at the same time Tyler had a basketball game about a half hour away which I was disappointed to have to miss but was planning to get there in time to see at least part of Aaron’s game. I ended up missing them both because Aaron’s game was also done by the time I got there! I left from there then to come back down to Riley.

Allen had originally planned on going back home on Saturday afternoon when I got back, and taking Wilma and the boys along home. However, it ended up that Topper and Marilyn Knepp drove down to Kokomo, where Allen met them with Wilma and the boys, to pick them up and take them home, then Allen came back down to Riley. Thank you so much Topper and Marilyn! It was so nice for Allen to have a little “alone time” with Benji and for us to spend some extra time together!

Benji did another PFT on Friday which sadly was down under 40 gain. There is a possibility that it was due to poorer technique than usual. (It may have been because I wasn’t there with him,) Today, Tuesday, he’ll be doing them again so we’ll hope for some better results.

Last Wednesday evening Benji was able to go off his oxygen for the first time since being down here. He stayed off for about 24 hours then had to go back on it. Since then he’s been on it the majority of the time with periods of being off. During last night he was able to be off of it and hasn’t needed it yet this morning.

He did spit up some bloody mucous again yesterday; he’d done that a fair amount of times last week but it was usually dark colored which indicates old blood and he hadn’t spit any up for several days. However, last evening he again spit some out but it was brighter colored, which indicates new blood. The doctors are waiting to see if he spits up any more fresh blood before “doing something about it.” I’m not sure what that means but I don’t need to worry about it unless he spits up more.

Benji has been doing a tremendous amount of vomiting since we’re here. It seems like the IV antibiotics are loosening up his mucous enough to cough it out which is a good thing, the problem is that the mucous often makes him gag and the gagging make him vomit. This of course gets very old for him and is making it very difficult to gain weight; we’re constantly adjusting his feeds (right now he’s getting 2-a-day plus the night time one) to get enough calories into him without causing him to be so full that he pukes it up. He has no appetite at all when he’s in the hospital, probably because he gets so little exercise, and I have been thankful over and over for his feeding tube!

I need to be wrapping things up, it’s time to go for PFT’s. We continue to appreciate your prayers!

Cindy

P.S. My mom and dad are coming down to see Benji today and it's their 46th Anniversary today! Happy Anniversary Mom and Dad!

Tuesday, December 6, 2005 10:05 PM CST

We were released from Riley the day before Thanksgiving after being here nine days. Despite the fact that Benji’s PFT’s were not up to where we wanted to see them, we were anxious to be home for Thanksgiving and Dr. Howenstein was wanting to accommodate us as much as possible, so we went home to finish a couple IV’s with a scheduled checkup on Friday of the next week. We were able to go to Mom and Dad’s for Thanksgiving and Benji had a great time playing with his cousins (a lot of that was spent outside enjoying the snow) and was able to go to church that Sunday.

We had planned to send him back to school on Monday but kept him home because the home health nurse needed to come out and draw some labs and “re-access” his port. (When we had the port put in we understood that having it would mean less “poking” however we found out later that whenever he was on an IV he’d have to have a new needle inserted into the port weekly and when he wasn’t on IV’s he’d still have to have it “accessed” monthly; accessing means they stick a needle into the port and flush it with saline and heparin. So… the trauma with needles, which we were trying to avoid or at least lessen, was actually increased. The only comfort is that we’ve been told that given his condition, this is the best option.)

Back to Monday, previously when Benji needed labs drawn, the Home Health nurse had gone to the school to draw them but since accessing his port is always so traumatic, we decided to keep him home from school on Monday. Tuesday morning we decided we’d let him sleep as long as he wanted then take him to school for the rest of the day. (Benji has always been the kind that doesn’t stay in bed any longer than he needs to. If he’s not tired, he gets up.) That day he slept until 11:00 and ended up only being at school for a couple hours in the afternoon and that is the only time he’s been at school for approximately the last 3 – 4 weeks.

That evening he started running temps up to around 102o. When he was still running a temp on Thursday morning, we called his Dr. to see if they wanted to see him before Friday. They called back and said to take him off one of his antibiotics as it could sometimes cause fevers and we should still plan on coming down on Friday.

We came back down on Friday, prepared that he might have to stay. He no longer had a temp but sadly, his PFT’s were back down to 38% and his lungs sounded all crackly again. Dr. Howenstein said she thought we’d lost all the progress we’d made. It’s all a little puzzling; his sputum cultures had not been growing anything unusual nor anything that should be causing this much trouble and his chest x-ray showed no deterioration since last April.

Dr. Howenstein said she wanted to readmit him and wanted to schedule a bronchoscopy for the first of this week; this had been the only way we were able to find the “atypical mycobacterium” in his lungs that had done so much damage last fall. For some reason, he couldn’t seem to get sputum out from deep enough in his lungs to grow the more dangerous “bugs”. So Cindy stayed here with Benji and Gene Troyer drove to Kokomo to pick up Allen. (Thanks Gene!)

We were admitted on December 2; interestingly, last year we were discharged on December 2 which got Benji home just in time for his birthday which is the 7th. This year he’ll be spending it in the hospital. I know it must be awfully disappointing for him because he had planned to have some boys over for overnight this week but he hasn’t complained once.

Allen and the boys drove down this afternoon to have a little party and spend a few hours with Benji before driving back home again; it didn’t work out for them to come tomorrow. We had a big birthday cake (which Benji of course didn’t touch) and ice cream which we shared with all the staff and patients and their families on this unit. The nurses also came in to help us sing happy birthday to Benji. It was all a lot of fun and Benji really enjoyed spending that short time with his brothers! Allen also brought a HUGE happy birthday poster from school which almost everyone from the school signed. While showing it to him his eyes really lit up when we told him that EVERYONE at school had signed it. Thanks to whoever was responsible! I also know that the nurses and social workers are planning to throw him a party tomorrow and we have a special surprise for him on Friday evening.

Today is Tuesday and we found out this morning that he probably won’t have to have the bronch done. His cough has increased tremendously since being here (possibly due to loosening mucous from the IV’s) and he is constantly coughing up mucous. Because of this we’ve been able to get a bunch of sputum samples from him.

The docs also told us this morning that at least one of Benji’s sputum’s had grown the “atypical mycobacterium” again; this is good and bad news: the good news is that he probably won’t have to do the bronch; the bad news is he is still growing this bacterium. While it is not that much of a surprise that he still has the bug in his lungs (the Docs had told us a year ago that once cystics get something in their lungs, they seldom get rid of it), he has not grown this in any of his sputum cultures since last year. So today the ID (Infectious Disease) Docs also came in to check him and they are again involved in helping to determine which antibiotics to put Benji on.

It will again take many weeks (possibly 6 to 8) to determine which specific bacterium this is and even whether it’s still the same one or a different one. They know it’s from the same family but, to continue the family analogy, it’s going to take a while to figure out which specific great (or great-great) grandchild it might be. They are also testing for fungi which take a while and which he grew quite a variety of last fall. We don’t expect we’ll need to stay in the hospital all that time but at this time our expectations are that we’ll be glad to be able to be home for Christmas. At this time we know we’ll be here until at least next Tuesday because Dr. Howenstein (who is not currently the Pulmonologist in charge here at the hospital but is head of the CF department at Riley as well as Benji’s primary caregiver) said this morning that we’ll still be here next Tuesday when she’ll stop by to see him again. It’s also likely that they’ll want to keep him here until they have a better idea about what’s going on in his lungs and to see if we can get his PFT’s back up to his baseline of 50% or if it is determined that is not possible, to find out what his new baseline is.

Our first night back here, we were put in a room on 2A because there were no isolation rooms available on 3A, with the promise that we’d get moved as soon as a room opened up. While the staff on 2A was all very kind, it wasn’t “home” and we were glad to move up to our old room on 3A even if it was at 10:00 on Saturday evening. We are actually back in the very first room Benji was ever in here.

Benji doesn’t appear real sick although he has been on oxygen ever since we’ve been here; he hasn’t needed oxygen for this long since a while before we were discharged last fall. I (Cindy) believe he’s only needed oxygen two other times since then and it was only for a day or so. The doctors say that “clinically” (how he appears) he seems to be doing much better and his PFT’s (lung function tests) today were slightly improved though still only in the high 30’s to low 40’s. We’ll probably do our next tests on Friday.

As I had said earlier, his coughing has increased a lot and often when he has a coughing fit, he ends up vomiting. I can’t imagine how awful it must be to vomit 6…10…15 times a day! The Thursday night before we came down here he had a coughing fit around 1:00 in the morning and ended up vomiting all over his blankets and sheets. While I was cleaning him and it up he was crying and said, “I don’t want to do that one more time!!” I asked him if he meant he doesn’t want to throw up one more time and he said “yes!!” These are the times that I get a huge lump in my throat and I can’t hold back the tears and sometimes ask God why Benji has to go through this! I would give anything to take his place!

Pray that God gives wisdom to the doctors to figure out what’s going on and to know how best to treat Benji. Pray also for our family; no matter how routine this has come to feel, it is always stressful for us all and I think we often don’t even know all the ways it’s affecting us.

Thanks again for your interest in Benji’s situation, for your prayers and for all the ways you show you care.

Goodnight,

Cindy

P.S. I’ll try to get some new pictures up tomorrow.

Wednesday, November 23, 2005 11:59 AM CST

Today we're going home! We're a little confused as to what's going on with Benji; his overall symptoms are improved but his PFT's aren't any better. (We can't seem to get it above 42o 44 Last night was the first night I didn't have to get up with him because of his coughing fits.

The chest x-ray we did the first day here showed no changes from last April so apparently his lungs have not deteriorated in the last 7 months (PTL). We're wondering if he may have some inflammation in his lungs, which is making it difficult to get an improved PFT.

We'll be going home on 2 IV’s, which we'll continue until at least next Friday when we come back down for a checkup.

Benji's quite excited about going home and we're so thankful to be able to be home for Thanksgiving!

Thanks to all of you who continue to care so much and for keeping us in your prayers.

Happy Thanksgiving to you all!
Cindy

Friday, November 18, 2005 2:41 PM CST

Benji’s back at Riley. A few weeks ago he ran a temp most of the week and was home from school the Thursday and Friday that week. (That’s the first he’s missed any full days of school this year.)
The following Tuesday Dr. Howenstein, at Riley, said she’d like to see him even though he hadn’t run a temp since the previous Friday. At that visit, his PFT’s (lung function tests) were down; his baseline (the highest level he can reach) has been in the high 40’s to 50 percent and out of the 5-6 tries he hit one 44%, the rest were all 42%.
The Dr. sent us home with an oral antibiotic but wanted us to call the first of the next week (November 14) to determine if he’d need an IV. By Monday morning Allen and I felt Benji was pretty much back to his normal self; he’d not been running any temp, he was coughing less and seemed to have a pretty good energy level again. We figured it should be fine to wait for his scheduled check-up, the day before Thanksgiving, but just before we call the Dr. to let her know what we thought, three times in-a-row Benji coughed up mucous with streaks of blood in it. I guess this is a fairly common occurrence in Cystics but tends to indicate infection or some sort of irritation in the lungs.
Later on Monday, we received a call that Dr. Howenstein did want to admit Benji, so late Monday afternoon Benji and I (Cindy} headed for Indianapolis. I was surprised that upon check-in, Benji’s oxygen was low and he needed to be on oxygen the whole night. Fortunately, since then he hasn’t needed it at all. It makes me wonder though how often his oxygen level is low at home and we just don’t know it since we don’t have any way to gauge it.
I asked Dr. Howenstein on Tuesday if she thinks we can be out of here by Thanksgiving, she couldn’t tell me for sure but said there is a possibility that he might be able to go home and finish his IV’s there if necessary. It would depend a lot on his PFT’s.
This is Friday and Benji had his first PFT about an hour ago; although he did a wonderful job with effort, we were disappointed to see that they have not really improved. So….we don’t know yet what that means, but I’m guessing we’ll be here at least till right up to Thanksgiving. One of the residents told me this morning that they will know better by Monday what the plan is.
Even though he’s needed to be hospitalized again, Benji doesn’t seem sick (for him); he’s in-and-out of bed and is plenty energetic. You may recall last year when we were in the hospital for 7 weeks, he spent almost the entire time in his bed without any apparent desire to be out. We would occasionally get him up to eat or sit on a chair with us but he would soon want to get back into bed. It’s not at all like that this time. He doesn’t “act” sick.
It’s funny how circumstances change our perspectives! If someone had told me a little over a year ago that Benji would have to be hospitalized in Indianapolis for a couple weeks, twice a year, it would have felt pretty big. However, since last fall and then 6 months of being admitted approximately every-six-weeks, coming down here for 2 weeks after not being here for 7 months, seems quite minor! In fact, I’d be delighted if we’d only have to come down twice a year from now on!
Benji’s back on 3A, in isolation. (3A is the unit we’re always on). It’s always good to see a lot of familiar faces and it’s disappointing to learn that some of the nurses have moved on to other places and we may never see them again. It must be very comforting for Benji to be hospitalized in a place where he’s warmly welcomed and is very familiar to him! I know that when I leave home for 2 weeks, it feels good to me to come to a place where so many people recognize us and welcome us back.
Yesterday the gal from “Child Life” brought a verbal scavenger hunt for him to do. Child Life is the department that brings daily activities for Benji and always brings him tons of gifts. They’re the ones who brought him all his Lego’s last year. So far this week she has brought Benji a coloring book, crayons, 3 Bionicles (robot-like figures that he can put together like Lego’s), a Checkers game, and an UNO game.
This scavenger hunt is a lot fun; she brought along a little cassette player with a microphone and an instruction sheet with a list of things that Benji has to record. Things like the day shift nurse making 3 animal noises, the dietician counting backwards from 30 by 2’s, Mom or Dad counting to 20 while rubbing their tummy and patting their head at the same time (try it-it’s not as easy as it sounds), and the Dr. has to sing one of her favorite songs. There are a total of 10 things he has to get then he gets another prize.
I’m so glad that Benji has always been in isolation while he’s here. I’m afraid he wouldn’t be as content as he is except that he doesn’t really understand that other kids get to be out in the hallways and roaming the hospital when they’re admitted; his idea of being in the hospital is always being in his room except for occasionally going to different areas for tests. Of course then he always needs to be masked and gowned and we’re supposed to go straight there and come right back. (Sometimes, like today, we cheat a little and I take him to the gift shop or McDonalds or the library.) I think he’d be content to be holed up in a room for a year as long as he’d get fed and have some sort of video game or computer game to play! The other benefit is that we always get a private room.
Aaron and Tyler have their first basketball game this evening and Allen is staying home for that so he ‘s not coming down until tomorrow. I’m not sure is all the boys are coming with him or not, I know Cory will. Benji is looking forward to that, of course. I have my name on the waiting list at the Ronald McDonald house for tomorrow night, hoping that since Allen’s going to be here I could get a good night’s sleep away from the hospital. (I had forgotten how hard it is to sleep in the hospital.)
This is about all I have to say for now, when we know more, we’ll let you know.

Thanks for checking in!
Cindy

Wednesday, April 20, 2005

We're back...
On Wednesday, April 20, Benji was readmitted to Riley. On the 19th we were told he would probably need to be admitted again; his lung functions were down again, and we can't seem to keep his weight up, even with the feeding tube. The doctors are a bit puzzled as to what's going on and want to have him there so they can observe and test him.
On that same day, we found out Cindy would be having sinus surgery that following Saturday. (She has been struggling with breathing problems for the past 5 months and it was getting progressively worse. After doing a sinus CT scan, it was discovered that her sinuses were in very bad shape and needed to be operated on.) It was not at all ideal to think of both things happening at the same time but we didn't see any other way around it.
Mom Troyer agreed to come down to stay with Benji over the weekend so Allen could home to be with Cindy during the surgery.
(There's more on this hospitalization in the "Journal History" section.)

Sunday, August 14, 2005 5:50 PM CDT

Hello friends, family and other interested people,

Thanks for your continued support and interest in Benji and our family. It has been quite a while since we have updated this and thanks to my (Cindy’s) dad for doing the last one.

In June Allen and I flew to Portland, Oregon with Benji and Cory to see a Dr. out there. The purpose was to find help in working on the nutritional side of things in conjunction with all the medication Benji is on. While medicine is a wonderful thing and we are very grateful for what it has done for Benji, it always has side effects and can also make it more difficult to combat illness.

We heard about Dr. Brouse and decided it was worth a try to see if he could help. As a result, Benji is on a TON of nutritional supplements but it doesn’t feel as if we’re “shooting in the dark” at what to take. There are so many products out there, many of them wonderful, but seldom are the people recommending them able to pinpoint exactly what Benji needs based on their own research and knowledge of scientific facts.

It feels good to know that the regimen of herbs and vitamins that were recommended are based on the evidence of what Benji’s (not mine or anyone else’s) body needs. Dr. Brose is also a biochemist and has personally lab-tested the products he is recommending, so we know that Benji is getting exactly what the product is advertising. (When I asked him how he determines which products to recommend, he said that a number of years ago, after some product testing, he was shocked to find out that few nutritional products actually have the advertised percentages in them of what they claim to have. Therefore he is very careful about what he recommends.) Also, Dr. Brose’ recommendations came as a result of many tests: blood, stool and hair and physical exams. Thanks to Benji’s G-tube, we don’t have to make him swallow all of them, we simply grind them in a coffee grinder, mix them with a liquid and put it directly into his feeding tube. This has really been a blessing!

If this does result in an improvement in Benji’s condition, we don’t expect to really see notice it for at least 3 to 6 months. If it even achieves a teeny bit of improvement, it will have been worth it.

We have has some good news recently! Last Wednesday, 8/10/05, Benji had his regular checkup at Riley. Allen and I have been able to, for the most part, instinctively tell when Benji is worse and will need hospitalization. His cough had been worse and he had been running temps and we were preparing to be admitted. Along with this, Dr. Howenstein had told us to come prepared to stay. (She has never done this before.) So… we went down with the expectation of being hospitalized just before school started.

What a blessing and surprise when the Dr.’s first comments were that Benji looked better than she’s ever seen him! His lung function tests were also in the high 40’s (about the best his get) instead of the high 30’s where we expected to see them. She also stated he’s having a lot of sinus drainage, as a result of allergies, which she believes is causing the cough rather than an infection.

Could this be the first sign of the benefits of the supplements? We are cautiously optimistic.

So we are all at home, continuing to prepare for the beginning of another school year, just like all of you. Benji has now been out of the hospital for 3 ½ months; previously he’s been admitted about every-six-weeks since last fall.

Continue to pray for healing; you know God can also perform miracles through modern medicine and nutritional supplements. Pray also for continued guidance for Allen and I in knowing where to turn for the best treatment for him.

Cindy for the Eash family

Sunday, August 14, 2005 5:50 PM CDT

Hello friends, family and other interested people,

Thanks for your continued support and interest in Benji and our family. It has been quite a while since we have updated this and thanks to my (Cindy’s) dad for doing the last one.

In June Allen and I flew to Portland, Oregon with Benji and Cory to see a Dr. out there. The purpose was to find help in working on the nutritional side of things in conjunction with all the medication Benji is on. While medicine is a wonderful thing and we are very grateful for what it has done for Benji, it always has side effects and can also make it more difficult to combat illness.

We heard about Dr. Brouse and decided it was worth a try to see if he could help. As a result, Benji is on a TON of nutritional supplements but it doesn’t feel as if we’re “shooting in the dark” at what to take. There are so many products out there, many of them wonderful, but seldom are the people recommending them able to pinpoint exactly what Benji needs based on their own research and knowledge of scientific facts.

It feels good to know that the regimen of herbs and vitamins that were recommended are based on the evidence of what Benji’s (not mine or anyone else’s) body needs. Dr. Brose is also a biochemist and has personally lab-tested the products he is recommending, so we know that Benji is getting exactly what the product is advertising. (When I asked him how he determines which products to recommend, he said that a number of years ago, after some product testing, he was shocked to find out that few nutritional products actually have the advertised percentages in them of what they claim to have. Therefore he is very careful about what he recommends.) Also, Dr. Brose’ recommendations came as a result of many tests: blood, stool and hair and physical exams. Thanks to Benji’s G-tube, we don’t have to make him swallow all of them, we simply grind them in a coffee grinder, mix them with a liquid and put it directly into his feeding tube. This has really been a blessing!

If this does result in an improvement in Benji’s condition, we don’t expect to really see notice it for at least 3 to 6 months. If it even achieves a teeny bit of improvement, it will have been worth it.

We have has some good news recently! Last Wednesday, 8/10/05, Benji had his regular checkup at Riley. Allen and I have been able to, for the most part, instinctively tell when Benji is worse and will need hospitalization. His cough had been worse and he had been running temps and we were preparing to be admitted. Along with this, Dr. Howenstein had told us to come prepared to stay. (She has never done this before.) So… we went down with the expectation of being hospitalized just before school started.

What a blessing and surprise when the Dr.’s first comments were that Benji looked better than she’s ever seen him! His lung function tests were also in the high 40’s (about the best his get) instead of the high 30’s where we expected to see them. She also stated he’s having a lot of sinus drainage, as a result of allergies, which she believes is causing the cough rather than an infection.

Could this be the first sign of the benefits of the supplements? We are cautiously optimistic.

So we are all at home, continuing to prepare for the beginning of another school year, just like all of you. Benji has now been out of the hospital for 3 ½ months; previously he’s been admitted about every-six-weeks since last fall.

Continue to pray for healing; you know God can also perform miracles through modern medicine and nutritional supplements. Pray also for continued guidance for Allen and I in knowing where to turn for the best treatment for him.

Cindy for the Eash family

Monday, May 9, 2005 9:17 AM CDT

Hello Everyone,
This is Cindy’s father reporting! Cindy asked if I would write an update since they are on vacation and she forgot to write before they left. Benji came home from Riley’s last Wednesday, May 4. Benji gained 3 lbs. and his lung function was up to 50. PTL. This gain was just in time for the family to go on a previously planned vacation to Florida. They left Friday evening after the boy’s ballgames. Cindy is feeling some better since her sinus surgery. Hopefully, the sun and relaxation will do them all some good. Keep them in your prayers. Thanks.

Monday, May 2, 2005 9:24 PM CDT

Hello,
I was not aware that Cindy had not updated this in the last few days until yesterday. She has been feeling a little better but still not 100%. The Dr said she should not expect much change for at least a couple weeks.
As for Benji, not much has changed there either. He still does not like to eat. But, we keep encouraging him and trying to get him to understand the importance of eating a healthy meal.
We hope to find out tomorrow if we can be released to go to Florida for 10 days! Pray that we can enjoy our time together like we never have before. I keep feeling the need to get away and spend time with all the boys together and rekindle some relationships that have been in need of rekindling!
Until next time…

Thursday, April 28, 2005 9:06 AM CDT

Hi,
Well, I am still here! Cindy did not have a very good day yesterday and felt like she needed to get caught up with sleep and small jobs around the house. I am anticipating her to be here sometime today.
Our night was pretty much normal except they stopped Benji’s feeding at 4:00 AM to prep him for a test to check if he has reflux. He has been vomiting quite easily whenever he coughs and they are hoping to try to stop that so he can keep more of his nutrients in his system. They also started his new med yesterday and seems to be going OK.
We have been trying to go on a family vacation since last September but have not been able to go due to Benji’s condition. We have another vacation scheduled for next week leaving on Friday. I was going to reserve a place for us to stay but can’t reserve it without losing our deposit if we have to cancel. So we will wait until next week to decide if we can even leave or not.
Pray for Benji and for the family that we could all leave for vacation and have a special bonding time.
Until next time…….

Wednesday, April 27, 2005 1:15 PM CDT

Hi,
Today is another day without much change in Benji’s health. His PFT was pretty much the same yesterday as it was on Friday. The Dr’s are trying some new medications to try to help that. We also will be starting him on another medication to try to get him to feel hungrier. Each day brings new joys and new sorrows. Today we were playing ball and he was feeling so good. Soon after we were done he vomited and didn’t feel so good again.
I just spoke with Cindy and she had a restless night again. I hope it’s an isolated thing and not a pattern starting. She was going to come down to take my place but I’m not sure if she will be able to now.
Keep praying for us and we will continue to be faithful!
Until next time……

Tuesday, April 26, 2005 10:35 AM CDT

Hello,
We are still here at Riley hospital. The Dr said this morning that she does not expect us to be leaving this week! I was hoping things would turn around a little sooner than this. We are planning to go on a family vacation next week. We have been trying to go on vacation since last September but every time we had it planned we have been in the hospital.
Cindy is feeling better this morning. She is going in to see the Dr today for a post-op checkup.
Benji has not been eating real well, however I think it might be a little better since we are here. We have a PFT scheduled for today and I’m anxious to see if his lungs have improved any or not.
Pray for healing for Benji and for strength and wisdom for the rest of us. We would really like to go to Florida soon so we can all kick back and relax and enjoy the moment.
Until next time…..

Monday, April 25, 2005 10:07 AM CDT

Hi,
I came back down yesterday. Cindy’s Dad and Dale came along and then went back home with Cindy’s Mom.
Benji has not improved a significant amount since we’ve been here. He has however, not vomited since we are here. He continues to try to eat as much as he can and keeps telling me that he doesn’t like food. We are hoping that when the antibiotics are out of his system maybe he will get his appetite back. He is on some new antibiotics now but he usually does not lose his appetite with those.
The Dr said they need him to gain 3-4 pounds and have the cough improve some before he can go home.
Cindy had her surgery on Saturday and all went well with that. She had some breathing problems for the last five months and hopefully this will help her considerably! The Dr said they actually found a bit more in the sinuses than they anticipated, but he is optimistic that this will help a lot.
Pray, Pray, Pray!!!!
Until next time……..

Thursday, April 21, 2005 10:04 AM CDT

Hi,
We came back down last evening about 9:30. (04/20/05)
We were here Tuesday and the Dr was quite disappointed with the progress in the last four weeks. She wanted a CT Scan and then she was going to consult with the Infectious Disease DR to see what they want to try next. It doesn’t feel very comforting when the Dr says, “I don’t know what to do next” We just keep leaning on each other and the Almighty God!
Cindy is at home with the other boys until I return home Friday PM. Her mom will be staying with Benji until I return on Sunday PM. Cindy has surgery on Saturday AM for her breathing problems she has been having. Keep praying - Allen

Friday, March 25, 2005 6:56 PM CST

Hi,
Benji and Cindy came home today! He was actually released on Thursday PM but it was too late to drive all the way home so they slept in Kokomo. It's good to have everyone together again. Benji seems to be doing well. He is on four different antibiotics for 4 weeks. We will be going back down at that time for another evaluation.

Keep praying for healing for Benji! We want to be in God's will however I believe he also wants us to keep asking him for healing. What a testimony Benji would have if he could be healed!

Until later....

PS. we will continue to update this every so often so you know what's going on.

Wednesday, March 23, 2005 8:15 AM CST

Hi everyone,
We had another fairly good night. Benji woke up around 4:30 AM coughing. He ended up vomiting again. He seems to be having extra sinus drainage for some reason. We are having a lot of fun playing UNO and Yahtzee. Child life showered him with games, books and colored pencils yesterday morning.
Last evening we had a CT Scan done again. The team of Doctors is meeting late this morning and discussing his case to see what they want to do as far as treatment. They are planning to send another culture out to Colorado for more testing. We will probably end up going home (maybe by the end of the week) and then they will change his medications according to the results of the culture, later. I was able to speak to the infectious disease DR last evening and he will be meeting with a couple more DR’s from the university to get their opinion as well.
It feels good to be down here now that we are here. We weren’t sure if we should go to South Bend or come here, but Cindy and I both feel that we made the right decision. Cindy will be coming down today and I will return home to be with the boys until at least Friday.
Until later…….

Tuesday, March 22, 2005 12:56 AM CST

Hello,
We arrived yesterday afternoon at about 3:30 PM. We were in the ER until 8:30 and finally were able to go up to 3A, the floor we know so well! I was asking the nurses in ER what is taking so long and they said they were waiting for a bed to open up at 3A. So, I went upstairs to see how they were coming along and the first thing they said was “we wondered where you were, we’ve had a bed ready for several hours already”. Lack of communication maybe?
Anyway, Benji is doing OK. He had a good night and feels pretty good this morning. I was remembering when we came in November he wasn’t even feeling well enough to enjoy having his cousins here to play with. He is certainly feeling better than that now. We are just trying to get his lung functions to improve more than what they already have. The Dr did say this morning that his lung function is down again from the last time, which I expected because of his cough again.
We will know better by Thursday or Friday how long we will be down here. Keep praying…. until later…

Sunday, March 20, 2005 7:40 PM CST

Hello,
Yes, we are still reading all the neat little notes you all give us! We so much appreciate the kind words of encouragement.
Tomorrow morning we will be going to Riley again for an IV antibiotic treatment. This will most likely be a 14-day treatment, however; we hope to be admitted for only 3-4 days.
Benji has been doing fairly well considering the circumstance but has been coughing more and complaining of his legs, arms and stomach hurting again, these were symptoms from November as well.
Every day is a joy to have him in our family! I often find myself thinking “it is such a blessing to be with him today” not knowing what tomorrow will bring. We should live like that always however; it is so easy to take health and life for granted.
Pray for us as we travel and pray for the other boys as they continue to face the reality that their little brother is sick and as we face an uncertain future.
Until later.....

Friday, January 7, 2005 8:46 AM CST

Greetings!

I trust you all had an enjoyable and meaningful Christmas!
We certainly enjoyed being home for the holidays. It was so nice to have Benji home and feeling better.
On December 28th we had to return to Riley for an infection that started at one of the surgery sites for Benji. We ended up staying for two nights. He is feeling much better again with the infection clearing up and all. This week the boys are back in school (including Benji) and we are trying to get back in the groove of things.
Last evening Cindy was having difficulty breathing and it got so bad I ended up taking her to the emergency room. We got back home about midnight. Seems like we have all been taking turns feeling out of sorts emotionally and physically!
Keep praying for us as a family and especially for Benji. We really would appreciate you praying specifically for his healing. I know that sounds radical and maybe somewhat desperate, and that is probably where we are. The long-term picture doesn’t look real good for Benji. However I believe through God’s grace he can be healed. I am reminded of the Leper that came to Jesus and said “Lord if you are willing you can make me clean” Jesus replied, “I am willing”. That is our prayer, that if Jesus is willing he will heal him.
Thank you for all your prayers and support! Keep in touch.
Until later…..

Monday, December 20, 2004 9:52 AM CST

Happy holidays to each of you!

Benji is doing quite well; he is in school today! We actually decided to send him last Monday, since he seemed to be ready for that, however, when the time came he was "just too tired". It was difficult to tell how much was physical and how much was psychosomatic, but we kept him home that day. That afternoon however, we went in to the school for a combined birthday party for him and another girl in his class who also has a December birthday. That seemed like a good way to introduce him back into school life: only being there for an hour and not having all the attention focused on him.

That went very well so I was surprised the next morning when he again said he was too tired to go. Amazingly though, he became excited about going once he discovered Mom and Dad weren't going to let him stay home from school for the rest of his life after all. (smile)

We had originally thought we would start him back half days, but he wanted to go the whole day, so we let him. He seemed to do just fine with that.

On Wednesday, we went down to Riley for his checkup. Overall, we had good news! His weight is back up to 49lbs. (the same as when he was admitted) and his PFT's were 52 The previous high had been 50so we're headed in the right direction! PRAISE GOD!!

The not-so-good news was that he has an infection at the site of one of his surgeries; they started him on a new antibiotic for that and we're still waiting to see how that heals.

He has been taken off his IV antibiotic, so now he is only on oral meds. This lightens our load quite a bit.

Wednesday evening Benji had a temp of 102.3 but we think that was just from the Dr. stirring up the infection at the site. We kept him home from school on Thursday, just in case, but he hasn't had a temp since. Friday then, he went back to school.

I'm amazed at his energy level! He was at school all day Friday and that evening at the Christmas program, he didn't seem one bit tired. Unfortunately, he wasn't able to participate in the program, since he didn't know any of the songs, but he enjoyed himself anyway.

On the 7th, five days after coming home, we took Benji to Chuck E. Cheeze's for his birthday. (That was where he chose to go) He was also able to take some of his cousins along and I think they all really enjoyed being able to play with each other.

Basically, he has adjusted back into normal life and we're just praying he can stay healthy!

We're so happy to be able to be home for Christmas! We hope you all have a blessed Christmas and are able to treasure those moments you will have with your families. I don't think I'll be getting out any Christmas cards this year, so this will have to suffice.

Merry Christmas from the Eash family-
Allen, Cindy, Aaron, Tyler, Cory and Benji!

Monday, December 6, 2004 8:49 PM CST

Finally! For those of you who have been patiently waiting for an update, I apologize! It has been a busy 3 days at home, but it has been good!

We had been told that we would probably be coming home on Wednesday, but on Tuesday, the docs told us it wouldn’t be until Thursday, since it would take that long to get all the discharge stuff done. By the time we left, Benji was so excited he could hardly wait!

As you may recall, Benji and I had “snuck” down to the library on Tuesday evening and were up late watching videos; so, when they wanted to take Benji for PFT’s at 9:00 Wednesday morning, he was not at all excited about the idea. Previously, our PFT’s have been late afternoons, and while I knew he was going to be doing PFT’s on Wednesday, I was not expecting it “first thing” in the morning. (The docs needed the results early enough to have time to discuss what kind of treatment they wanted to send us home with)
I was able to buy a little time for him but only until 10:30 and he was still not awake nor was he in any mood to get up to do PFT‘s!!. Benji, who has been quite cooperative through all this decided to show us his non-cooperative side, much to the amazement of the nurses. One commented to Benji that she’s never seen him like this. In the end, a student nurse pushed ME, on a wheelchair, to the Pulmonary Unit, while I held Benji on my lap. It bought us just a bit more time to allow him to get used to the idea.

As you might guess, Benji’s PFT’s were not what we hoped! Our hope is that the reason for the “lower-than-hoped-for “ results were his lack of enthusiasm and his continued soreness from his surgical procedures. On Monday, the 22nd , Benji’s highest FEV1, (the PFT number we’ve been looking at) was 50; this past week his highest was a 49 on Monday and a 48 on Wednesday. When we go back down on the 15th for our checkup, we’ll do another one; we’re really hoping and praying this one will be higher!

The numbers above (48, 49, 50) are the percent of the predicted lung capacity a child the same age and size as Benji should have. So, at this point, Benji’s lungs are only functioning at half of what they should be. If, when we go back for his checkup, his lung function has not gone up, they will take him off the antibiotic he is currently on for his CF. The reason for this is that they will only leave him on as long as his lungs are improving; if his FEV1 doesn‘t increase, they will consider his lung function to have stabilized and to be as good as they can get right now. We really are having a difficult time accepting that this is as good as his lungs will get and struggle a bit with feeling like if he is taken off this antibiotic, we’re “giving up”. We know also though, that being on unnecessary antibiotics is not a good thing. Pray that the docs make the decision that is truly best for Benji.

The rest of Wednesday, was spent packing, speaking with different departments about discharge stuff, getting questions answered by doctors and doing all the routine things. We got to bed a bit earlier that evening.

Benji was up at his “normal” time on Thursday morning and was itching to go home! There were a lot of goodbyes; after basically living at Riley for 5 weeks, we had made connections with a lot of really special people and while it was wonderful to be going home, it was a little sad to say goodbye. Shondra, the Child Life Specialist and “LEGO lady”, and Rose , one of the school teachers, came up with a banner that said Happy Birthday Benji (his birthday is the 7th) and gave him a birthday present.. The banner had also been signed by different ones of the staff. It was so sweet and exemplified why we enjoyed our stay there. I was not at all excited about the idea of going to Riley (unless absolutely necessary) because I was afraid it would have a “big hospital” feel, however, I have to say from the moment we walked in there it was a very good experience. The people there have been really wonderful and they have such wonderful programs for kids. Despite my concerns, it certainly did not have that “big hospital” feel. We’re looking forward to seeing many of the staff on our return visits.

Benji was really set on the idea of going to see a movie when he got out, before heading home. Allen had taken the other boys to see “The Incredibles” a couple weeks ago and this was one of the things Benji would talk about doing when asked what he was going to do when he got out. By the time we finally got out, it was around 2:30 to 3:00 and I knew that with 3 hours driving home, it would be quite late by the time we got home, if we still went to see a movie. However, Benji was so set on it, and I just couldn’t say no, after all he’d been through; so we went. First though, we stopped at Family Dollar to get him a pair of shoes, since I’d forgotten to take his down. Although he didn’t mind wearing his Shreck slippers to the movie, I wasn’t too sure about the idea of him walking through the City Center Mall in them. (smile)

By the time we had seen the movie, picked up prescriptions, gotten gas and something to eat and driven home, it was 9:45 PM ! I really wish I had pictures to show you of the decorations and people waiting here to welcome him home and a video of him when he realized that he was getting a special homecoming reception. He was expecting to come home to his dad and brothers all in Dad’s bed and so he was quite surprised to find our drive lined with cars. It was so special to see his reaction when he read aloud the big sign above the garage door that said “Welcome Benji” (the “Home” had blown off) He was so excited he could hardly wait to get out of the van. Inside, he found a house full of aunts, uncles, cousins and grandparents. Once again, I was overwhelmed with how supportive everyone has been; for them to be here at 10:00 PM, just to welcome Benji home, was so special!

We also met the Home Health Nurse here that night, to get us set up. We were able to come home on a fairly light schedule: the meds that Benji’s on for this mycobacterium in his lungs are both oral, he’s on one IV med for his CF, which he may possibly be taken off of after our next doctor visit, and we are weaning him off his steroid. For now, we will be doing his chest percussion manually, 3 x day, instead of 2 x day with his “Vest” (as we had been doing); he’s still too sore and tender for the stronger vibrations of the “Vest”.

We’re also still working on getting his strength and weight built up; he’s close to the weight he was when we checked into the hospital which is great, but we hope to be able to get his weight even higher. It seems odd that after all that time in isolation, the docs would just send him out with no restrictions, but they did and I believe the reason Benji needed to be in isolation was just a safety precaution. In fact, according to the material I’ve read about the particular mycobacterium he has, it is not contagious. We are however, concerned about the strength of Benji’s immune system. One of the papers I read said that in their study, only .5f cystics are found to have one of the mycobacterium that Benji has in his lungs and even less than that in the general population. It’s really a puzzle as to why and where he contracted this bacteria. As the doctors told us though, the solution can not be to keep him in isolation the rest of his life, that would be no life either . So…we will do the best we can to keep his lungs free from more infections and try to give him a normal life at the same time.

Benji is not on oxygen and has been off it the majority of the time, the last couple weeks and his cough is practically non-existent. I almost forget how terrible it had become when he was so sick. We are not planning to send Benji back to school until after the Christmas break, maybe “going back” at the same time as all the others will make his transition back to school a little easier.

Looking at Benji, right now, he physically looks really good! In fact, when I see how good he looks, it almost seems surreal that the doctors have actually told us that his lung disease is severely advanced and that his chest x-rays look like they do. I find it difficult to know how to feel: while I’m so glad to all be home, it’s difficult for me to get too excited. Previously, coming home would have felt like an end to a crisis but this time it doesn’t feel that way. I think there’s a constant question as to how long it will be till we go back.

We plan to go back down to Riley for his 2-week check on the fifteenth and then probably once-a-month for routine checkups until the doctors feel like we no longer need to come that often. I’ll try to get back with you a bit more promptly with the results of our checkup next week. After that, you may want to periodically check the webpage to see if there’s anything new. Don’t forget to pray for healing but most importantly, that God’s will be done!

Until next time…

Wednesday, December 1, 2004 7:00 PM CST

WE'RE GOING HOME TOMORROW! More later...

Tuesday, November 30, 2004 11:42 PM CST

Good evening,

We now think we’ll be coming home on Thursday; I guess they need more time to process all the necessary stuff to make it possible for us to be discharged. I do believe though, that the current plan is to actually go HOME. (not to St. Joe) Yippee! You know though, as excited as we are to be going home and Allen and the other boys are to have us come home, it’s my guess that our family will need some time to re-adjust to being home. Doesn’t that sound odd? Yet, to a certain extent we have become accustomed to a different way of life over the past 6 weeks and I suppose we shouldn’t just expect to fall back into life as we left it. That’s another aspect you can be praying for over the next few weeks.

Tomorrow we go do PFT’s again, one last time before we go home. PRAY for good ones!

Benji’s weight was up to 46 lbs. today!!! That’s just 3 lbs. under what he weighed at check-in. (to St. Joe hospital) It looks like we’re on the way up in that department. Thanks to all of you for your prayers and to Jesus for the weight-gain!

I spent some time packing stuff up today, it took quite a while to take down all the cards and other stuff people have sent. We’ve been asked a couple times if we’re going to need a U-Haul to get everything home; fortunately I took quite a few things home last weekend, so we may get by without. (smile)

I gave Benji a much-needed haircut today; based on the nurses reactions, I’m not sure they’ve seen anyone else do that here before. A couple of them offered to take a picture, I should have that picture on the web page tomorrow evening.

We finally have test results from the atypical mycobacterium in Benji’s lungs, they are chelonae and abscessus complex; tells you a lot, doesn’t it? I am currently doing some research on those particular bacterium, and when I know more, I’ll let you know. (If it’s worth passing on) Hopefully it does tell the doctors what they need to know though, so they can know how best to treat Benji.

Benji and I were naughty again tonight; we escaped, for a just a little bit. The last couple days, he has been asking to go down to the library, to pick out some videos; however, since he’s in isolation, it’s against hospital policy. I knew we couldn’t ask the nurses if it was alright to go down, because they could get in trouble if they say yes. And since we can walk through the halls to go do PFT‘s, (gowned and masked of course) I thought there was really no reason he couldn’t go down there for just a teeny bit (also gowned and masked); so, I just told our nurse tonight that she shouldn’t panic if she comes to our room and we’re not here, we won’t have escaped. She played along and said she’d think we were just in the bathroom or something and even brought us a wheel chair. (Though I did have Benji walk quite a bit of the way)
I sure do hope there aren’t actually any hospital police like Uncle Sylvan talked about, or we might be in real trouble!! (smile) It was a lot of fun for Benji and the whole thing seemed to energize him.

The nurses, doctors, therapists, aids and everyone here have really been so nice and despite being glad to be going home, we’re going to miss them; from the way some of them talk, they may actually miss us too, or at least Benji. (smile) They have all tried to be as accommodating as possible which has made our stay here so much more pleasant!

Until tomorrow…

I had lot,s of fun and donot frget The Bible.
(written by Benji-when I asked when he had fun, he said during his time in the hospital)

P.S. Lee, we did receive your cute little bag of piggy food, (thanks Pauline) and I was shocked to find out you had been here as well. I never expected you to go home a day after having a pacemaker put in, much less, stop here first. They sure don’t keep you in the hospital like they used to, do they? (Sometimes that’s a good thing!) Thanks to you both for that, and for thinking of us in your own time of health concerns and needs. God bless you!

Monday, November 29, 2004 7:10 PM CST

**Check out the new pictures on the photo page**

It was a pretty typical day but since we got to bed quite late last night, Benji slept till 10:30 this morning.

When we went to Benji's PFT's this afternoon, I had Benji walk part of the way; it's amazing how quickly he gets tired! Since he is still in isolation, he has to be the one to wear the gown and mask when he leaves the room and "technically", he's supposed to go straight there and straight back; however, on the way back, we kind of took the "long way" around, through the library and cafeteria. (smile) We take whatever opportunities we get to get him out a little.

I was disappointed with his PFT’s today, they were down one point from last week. I’m thinking though, that’s because his surgery last week probably set him back a little. (Hoping!) His weight is still hovering around 44 lbs., up 1 ½ lbs. since we checked in. It seems like we just can’t get past that point, but we’re still working on that too. Continue to pray for his physical strength and for his lung function.

The doctor said today that they're still talking about whether to send Benji home, back to St. Joe or stay here; I told her we want Benji where ever he'll get the best care. If we can get that at St. Joe that would sure be a lot more convenient than here! but home would be better still! I don’t know if we’ll know whether we’re coming home before Wednesday or not. The more we talk about going home, the more excited I get! The thought of our whole family being together and sleeping in my own bed EVERY NIGHT, again is sooooooo awesome!

I can’t think of anything else, so I’ll just say-
Until tomorrow…

Sunday, November28 , 2004 6:08 AM CST

**New pictures on the photo page**

Good evening,

Today came with another twist from the nurses. We were put back into isolation until further notice. I think there was some confusion on their part as to who put us into isolation to begin with. Anyway, the Dr said there was no order to take us out of isolation so here we are again. It really doesn’t matter too much to us because if we are out of isolation we may not have our own room anymore.

Cindy and Tyler came down this afternoon and Tyler and I came back together. It was nice to not have to make that trip on my own again. The Dr keeps saying that we’ll see how Benji is doing by the middle of the week and then maybe go home!
Keep praying !!!!

Saturday, November 27, 2004 8:34 PM CST

Good evening,
Today was another day with a few twists and turns but all in all it was a pretty good day. Benji had less pain today than yesterday and was more active as well. We were told this afternoon that we were no longer in isolation! That means we don’t need to see all those masked people come into the room anymore! I’m not quite sure why they decided to take us out of isolation today. Benji and I had permission from the nurse to walk around the hallway today until the charge nurse caught us and sent us back to our room! It was after that that she came back and said we are free to roam around wherever we want to.
We went down to the gift shop this evening. Benji has wanted to go down there for the last several days. Unfortunately it was already closed.
Cindy and her Mom went home today. She will be returning tomorrow. Hopefully she can get a good night of sleep and feel refreshed tomorrow.
Benji and I are spending time watching the Notre Dame game this evening. He had a good nap this afternoon and is not very tired yet at 9:30. We spent a lot of time sitting on the chair together today. Benji is getting more and more excited about going home. He keeps talking about what he wants to do when he goes home. He said the first thing he wants to do is sleep on the floor with Daddy and the boys. (A Friday night tradition)
Thanks again for checking up on Benji. We really appreciate all your prayers!
Until tomorrow…

P.S. im a lot beter- Benji

Friday, November 26, 2004 7:34 PM CST

Hi,
Today was a more normal day with Benji smiling a lot and having fun with his Game boy and Nintendo. He still has some pain but has not needed any morphine all day! He did have Tylenol every four hours. He had visitors today for a few hours this afternoon. Benji has shown a little more interest in going home than what he had been. Phil and Denise Bontrager and family were here and brought a video of the snow back home. Benji thought he would like to go home and play in the snow! We are looking forward to going home and having things a little more “normal”. I have a few reservations about going home when I think about all the medication and all the care that he is going to need. I am not concerned about doing it except that I hope we can give him all the care that he needs. His lungs seem so fragile to me right now and I pray that God will touch him in a miraculous way. I know God can do it and he wants us to ask him for healing. I know all of you have been praying as well, can I just ask one more time for all of you to please pray for healing? Pray that God will touch Benji in such a way that the Dr’s will be in awe with his progress. His PFT was higher than the Dr thought it would be by now and I know that God can do more! God has been so good to us already and we are grateful.
Cindy’s mom was down here for the night last night and will be here tonight again. She was in the room with Benji overnight while Cindy and I slept at the Ronald McDonald house. She will be here tonight as well. It has been such a blessing for us to be able to spend more time together.
Cindy will be going home tomorrow until Sunday. She will be taking her Mom back home with her. I will be here with Benji during that time. I’m looking forward to spending time with him alone again. I treasure every day with him. I wish I would have done that more before this. Pray for us that we can also take more time with the other boys. It is so easy to get too busy in life and loose focus on what our real purpose is.
Until later…..

Thursday, November 25, 2004 5:23 PM CST

Hello everyone,

This morning we woke up to the Drs coming in and checking Benji’s condition. Benji was very groggy from having morphine for most of the night for pain. He started another fever and had high heart rate, high respirations and low oxygen level. The Dr came in right away and spent quite a bit of time in the room trying to figure out what was going on. After a while we finally got the fever down and he spent most of the day sleeping.

Cindy’s family was here for Thanksgiving lunch. We spent a few hours at Golden Corral then were at the hospital for a while in the waiting room. It was nice to have them all here to visit.

Benji has been having quite a lot of pain from having the procedure done yesterday. He enjoyed seeing his cousins today even though he didn’t feel well enough to play with them.
Sylvan and Connie have been staying with Benji today while we're spending time with the family. He enjoys having them in the room.

Thank you for all your prayers and your notes. It is hard to imagine going through all this on our own. We have felt the support and prayers of all of you as well as the grace and mercy of God being poured on us.
Until tomorrow… Allen

P.S. Benji is still adding to his piggy bank. He is enjoying counting his money and letting it add up.

Wednesday, November 24, 2004 8:33 PM CST

This morning was a rough one. Around 11:30 this morning Benji had a surgical procedure done and had a port put in. He wasn’t at all thrilled with the idea and even though I tried to help him understand that he wouldn’t feel when they did it, and that he wouldn’t need to get poked anymore after it was done, he still didn’t want it.
As I pushed him into the room where the procedure was to take place, I saw a cold, sterile room with a table in the middle and a huge light over the table. It was enough to scare an adult, let alone a child. Benji began to cry and say he didn’t want to have this done. I asked them if I could hold him, they said I could and since there was no chair in the small room, I picked him up, sat in his wheel chair and held him there. No matter what I said, he couldn’t be comforted . He said he was scared but couldn’t say why, I can’t imagine what all might have been going on in that little mind.

I just couldn’t imagine having to put this little scared guy, on that table and leaving him there! I quietly asked the doctor if I could hold him while they put him to sleep. To my amazement and tremendous relief, he said I could! What an incredibly considerate thing for them to do and what a gift to both myself and Benji!! I was able to hold him, soothe him and stroke his head until he suddenly dropped off to sleep. Then it was mom’s time to cry. Thankfully, everything went well and several hours later, he was back in his room. He woke up just long enough to let us know he hurt, so they upped his pain meds and by around 5:30, was awake and stayed awake for the evening. Tonight he’s not moving much in his bed but he‘s talking pretty normally. He’ll probably be sore for a couple days but I think we’ll all be glad in the end.

The doctor told me this morning that he was encouraged with Benji’s PFT yesterday, praise God! Wouldn’t it be so awesome if those just kept going up! We know what to pray for!

Mom and Dad Troyer and Dale stopped up here a little this evening, when they got into town, but Benji was still asleep. By the time Allen and the boys got here, Benji had just awoken. Aaron is going to sleep in the room with Benji and Allen this evening; that’s always special for Benji.

We want to wish you all a wonderful Thanksgiving! We love you!
Until tomorrow…

Tuesday, November 23, 2004 9:43 PM CST

Short version:
Benji had a pretty good day, and was more like himself again, despite having a bad start. His PFT’s were slightly improved again, not as much as we’d like to see, but they were better. Keep praying! He sat up in his chair to eat lunch, which I believe is a first. His piggy bank topped a whoppin’ $121.00! Our God is faithful, even when we don’t understand his ways!

Long version:
This morning bright and early, 6:00 to be exact, we had a wonderful awakening! (!NOT!) “It’s time for a blood draw,” and all the bright lights got turned on! We have not had a lot of previous hospital experience and the longer we’re here, the more we learn! It had been my understanding last weekend, that we were not going to need to “stick” Benji anymore, so I was quite shocked when the nurses came in at that time, and so matter-of-factly declared that he needed his Tuesday-morning blood draw.

In my half-awake state of mind, I really questioned them, but when they said the doctor had ordered it just last night, I regretfully and regrettably assumed it must be necessary. We could hardly get Benji to wake up and he was obviously not at all happy about the idea and I just about couldn’t stand the fact that we were doing it!

Well, I’m learning about these things; come to find out, there was some misunderstanding. The doctor who had ordered the blood work had not been here over the weekend and didn’t realize they hadn’t been able to draw blood through his IV site. She, the doctor, felt so bad when she found out and said she wouldn’t have ordered the draw if she had known. This is what I learned: from now on, I will not consent to having him stuck, without speaking to the doctor myself! Even when their intentions are good, because of having so many people involved with his care, at various times, there are bound to be things that get overlooked or misunderstood. I or Allen are truly the only consistent ones involved with his care and we should not be intimidated when we think something doesn’t seem right!

Later, I also asked the doctor why they need to do it at 6:00 in the morning! The reason is so the docs can have results by the time they do their rounds. (and I’m assuming they want it done before breakfast) I told Allen that unless there is some reason the doctors need to have an answer that day, THERE WILL BE NO MORE BLOOD DRAWS AT 6:00 IN THE MORNING!!! They can get their results later that day and report them to us the next day. I also told the doctor that it would even feel different if it were an adult, like myself, who could understand it better, but I think this is just so rude for children. ( even though I think it’s rude anytime, to care less about the well-being of the patient than making sure it’s convenient for the staff. ) And then, to top it all off, when I finally got Benji settled down again and he was trying to go to sleep, I hear this rat-a-tat-tatting (it sounded like it was just below us) and then some thumping that sounded like a hammer. They are doing construction around here but I couldn’t believe they were starting this at 6:30 in the morning! Fortunately, that didn’t go on too long and I didn’t need to continue looking through my hospital manual for a phone number that I could call to let them know how “happy” I was with the situation. (smile) After all this, I did ask that Benji not be disturbed anymore, unless it was absolutely necessary, until he was ready to get up. They didn’t and he slept until around 10:30 to 11:00.

I do need to say, that the staff here, has been very easy to work with: docs, nurses, everyone. Whenever I have expressed concern about anything, they have been very accommodating and even apologetic at times. I guess we’re beginning to learn when we can and should speak up and when not to, to ensure that Benji gets the best and least intrusive care possible. I’m sure we’ll be learning a lot more in the future! (Benji has the same nurse tonight that he did last night, the one that did the blood draw this morning. As soon as she came in the room, she went right over to him and gave him a hug and apologized to him. She felt really bad too.)

Well, our day wasn’t off to a great start, but it did improve after that. He seemed much more himself again today and at lunch I had him sit up in his chair to eat. I believe that was a first. We also went to do our PFT’s today and I had him walk a little of the way back. He’s done very little of that and he complained about his feet hurting the whole time. I had a bit of a difficult time knowing how much they actually hurt or if he just wanted to sit down again to continue his Donkey Kong game on his game boy. (smile)

His PFT’s were again improved, his highest second number was a 50 and I was all excited about that until the therapist told me that when it was combined with the other numbers, it was an improvement but maybe not as much as it seemed. It was however an improvement and any little bit is great. Keep praying!

My family is planning to all come down for Thanksgiving; that is very special for me. I feel so blessed (there’s that word again, blessed, it seems I use it all the time these days; but so often, it seems to be the only word that fits) to have such a supportive and loving family! Both Benji and I are really looking forward to seeing them all. There are about 26 or 27 by now, so they won’t all be able to come to see him at once, but they can just come up in smaller groups.

Allen’s brother Sylvan and wife Connie, are planning to come down on Thanksgiving day to stay with Benji so that Allen and I can both be with the family for at least part of the day. We are also looking into the possibility of getting a “day pass” for Benji so we can take him to be with the family for an hour or two, as well. That would be so wonderful and I think it could be extremely therapeutic for him, as well as for his cousins who I know, would LOVE to see him feeling better! (Another thing to pray for)

I am truly feeling God’s love and grace carrying me right now, and I believe Allen would say the same about himself. Obviously, I have cried many tears, (those of you who know me, know it takes very little for that, so in times like this, I’m sure that is no surprise.) but I have also felt an inexplicable strength. (in the human sense) I would not have expected to be able to speak as matter-of-factly about all this, as I have been able to do at times, nor to feel a certain sense of peace like I do. I know there will be times that seem darker and more difficult to deal with than others, but we’ll get through those times as well; because we have a God who holds all of this, and Benji’s future, in his hands. At this time, only he knows what he wants to accomplish through all this; the test of our faith really comes when we don’t understand God’s plans and yet are still willing to trust him.

I guess we are experiencing one of those moments that I was talking about , a couple months ago, during sharing time at church. When I was sharing that I knew God’s grace would be sufficient for us, no matter what the future held with Benji, I had no idea we’d be experiencing it so soon!! I know it is a result of all of your prayers of intercession for us and all the love you‘ve shown! Thank you so much!!!

Until tomorrow…

Monday, November 22, 2004 0:00 AM CST

Good evening,

Benji had an average day today; he didn't run any temps and his vitals seemed good, but he didn't seem like himself. By mid-morning he said he "didn't feel very good" (which is unusual) and slept from 11:30 till around 3:00 - 3:30. It's quite unusual for him to take naps these days or to even seem tired. He also seemed more out-of-sorts than normal. We'll see how he is tomorrow; maybe he just had a bad day.

Benji's nap today was timed quite well because Allen and I met with the doctors early this afternoon so we could talk with all of them together, and so we could get a better understanding about what we're facing with Benji. Allen had not had a chance previously, to talk to the docs, to see his x-rays or have them explained. It also gave us both the opportunity to ask questions we needed answered.

Again, no one can really make any specific predictions about the future, but I felt it would be helpful to have some way to gauge what the doctors felt about Benji's condition; so I asked Dr. Stevens where he feels Benji would be on a scale of 1 - 10 ( 1 being good lungs and 10 being a lung transplant) He thought Benji would probably be around 7 to 8. That was helpful for us to understand what they’re thinking and some of you may find it helpful as well.

Our goal right now is to get Benji as healthy as possible and to get his lung function as high as we can. Good nutrition is extremely vital to this and part of that is getting food into Benji. I won't be talking more about the feeding tube, for now, because in my conversation with Benji this evening, he seemed pretty sensitive about having people know if he we went ahead with it; so I told him if we did it, people wouldn't need to know. This is a bit difficult since I've been talking about the possibility of doing it for quite a while and I knew it wouldn't work to just suddenly stop. The idea of doing this may not be such a big deal to him in time, but I want to be sensitive to how he's feeling about it now, so we just won't talk about it at this time.

We made the decision today, to insert a "port" into Benji's chest. This is a "well", placed under his skin, for IV access, it's a surgical procedure, is permanent and less likely to get infected than a pic line. Benji will also be able to take showers and go swimming with this, he couldn't with the pic line.

We are tentatively planning to come home next week. That is if Benji doesn't run any more temps in the meantime and if he continues to improve as he had been, prior to last Wednesday. Depending on his medication regimen, we may have a home-health nurse helping for a while. It would sure be nice to all be back home again but we don't want to take him home until we know he's pretty stable. I'm not sure when he'd be returning to school, but probably not immediately, and possibly just half days (if possible) for a while after he starts back. His eyes did light up a bit when I mentioned going home today.

Some of you may be interested in looking at Benji’s chest x-rays in the photo album. I apologize for accidentally deleting one of the other sets of pictures. I can't seem to find the CD tonight, that has those pictures, but will try to get them back up as soon as possible.

I forgot to mention yesterday, that Harold and Eileen Yoder and Floyd and Linda Miller also stopped by on Saturday, though Benji was running a temp at that time and missed them. Conrad and Lynette Showalter, our pastor and wife, were here for a time today, and helped get some video of Benji in his “domain”, even though Benji didn’t seem to at all feel like being a movie star today.

It’s late and I need to close for tonight.
Once again, thanks for your thoughts and prayers.
Until tomorrow…

Sunday, November 21, 2004 7:16 PM CST

Yesterday, (Saturday, November 20) Benji again awoke with a fever that climbed to 103.8. We don't know exactly what is going on but the doctors think it might be an infection from his pic line. Fortunately, it was just in the morning and by afternoon, soon after Allen and the boys had come, he was back to being himself. He seems to bounce back from these temp spikes much better than he did before, probably because they're not near as often and his body isn't as rundown.

Of course, he didn't eat at all yesterday morning again since he was feeling so crummy, so we got a little behind in his calorie count again.

His aunts: Rose, Tina and Naomi (Allen's sisters) and Dody Eash came to see him yesterday too. Aaron went back with them last evening and Tyler stayed with Benji and Allen in the hospital room. Cory and I stayed at the Ronald McDonald House. Benji was so glad to see his brothers (and his dad too, of course!) and so was I!! I hadn't seen them all week.

Today, Sylvan and Connie (Allen's brother and his wife) came and stayed in the room with Benji, Cory and Tyler while Allen and I went out for dinner together; it's so nice to have those little moments together. Tyler and Cory went back home with them this evening.

Benji had a very good day today, not much new to report. He says his $ count is up to $72.00 now. (He's even got the staff here contributing to it.) I don't know if I've said it on the web page before, but with all the gifts and money he's getting while in the hospital, we’ll never get him home! (smile) He's also making a lot of friends here.

Allen and I and the boys have been trying to digest some new information we received this week. Tuesday morning Dr. Stevens informed me that Benji has something called Bronchiectasis all throughout his lungs. Bronchiectasis is an irreversible inflammation of the bronchioles and the extensiveness of it directly correlates with how advanced his cystic fibrosis is.

I spent some time with the doctors the last couple days, reviewing Benji’s x-rays and CT scans and doing some research on my own. The hospital here has wonderful resources and a man who does research for the families; I simply told him what information I wanted and he found what he could, printed it up and got it to me. This was extremely helpful and much appreciated. It consumed much less time then me trying to find the information myself.

As I understand it, Benji’s bronchiectasis was caused by chronic infection in his lungs, exacerbated by the cystic fibrosis. The doctors are still trying to figure out where the atypical mycobacterium that was found in his lungs came from and what part it might have played in the deterioration of his lungs. I have been told it is almost never seen in cystics, even here and in my research of bronchiectasis, TB and atypical mycobacterium frequently came up. You may recall how I mentioned in the introduction on the home page that as I look back, it seems that ever since April, Benji’s health has been slowly deteriorating. I guess there was a reason for that; the change in Benji’s x-rays from April till now was amazing; the increased Bronchiectasis was very obvious, even to an untrained eye. I guess advanced Bronchiectasis is typical in older cystics because their disease is also more advanced; it is not very common though in cystics his age.

This is obviously not what we wanted to hear; this is something we had thought we wouldn’t need to deal with for another 10 – 15 years, AND we were expecting that a “cure” would be found by then! Our goal has always been to keep his lungs as infection-free as possible so that when the “cure” was available, the most damaging aspects of the cystic fibrosis would no longer be a problem and he would be able to live a fairly normal, healthy life with only slightly damaged lungs. It seems that is no longer a possibility. Prognosis for extensive bronchiectasis is varied and the lung function tests (PFT’s) we’ve been doing are what is used to gauge the damage that has been done and the necessity of a lung transplant. The doctor said when the PFT’s hover around 40% and below and don’t get better, the subject of lung transplantation is brought up. Today Benji’s highest PFT was 45%. This is slightly better than last time and his PFT’s have been gradually improving. We don’t know how much those will still improve I don’t think the docs are very hopeful that they will improve dramatically. This is one more specific thing you can pray for!

We don’t really know what our future holds but Allen, the boys and I are grieving the fact that “life as we knew it,” with Benji being fairly “normal” is probably over. We need to begin to think of his disease and how that affects our family in a totally different way: Benji will probably be sick more often, his respiratory treatments will increase from twice-a-day to four-times-a-day, he’ll probably have more frequent hospitalizations (at Riley), we will be going to Riley for clinics, he’ll probably need a feeding tube, IV antibiotics will probably become more frequent and at times we’ll probably need to carry oxygen with us. We are expecting these things to be a part of our new way of life.

Along with this we need to face the fact that a lung transplant may, at some point relatively soon, be our only option; relative in light of the fact that we were not expecting to even have to think of anything like this for another 10 – 15 years, if ever. There is no way of really knowing how long Benji’s lungs can continue to function effectively but based on the sudden escalation in his lung deterioration, it doesn’t seem probable (barring a miracle) that they could last years. It is also not certain that Benji could even have a lung transplant. His name would get put on a waiting list for a matching lung but since there is always a shortage of lungs there is no guarantee one would be found in time.

Please pray that Allen and I would make wise decisions regarding Benji’s care and the strength to deal with whatever lies ahead. Along with that, that we would also make wise decisions regarding the other boys and that we would know how to balance Benji’s needs with their own. Pray that Aaron, Tyler and Cory would find healthy ways to deal with this realization and that they would really feel the grace of God carrying them through this time!

We don't always understand God's ways but I recently heard a quote from a friend that I really like and have often thought about since, it was "God never wastes a hurt." We want to take what hurts come our way and use them as a means to better minister to others and to serve God better.

Good night and until tomorrow....

Friday, November 19, 2004 7:28 PM CST

The journal entry for Saturday Nov 20 will be included with the journal entry for Sunday Nov 21.

Journal entry Friday, Nov 19:

Good evening! Today was another day that just flew by! When I came down on Monday, it felt like I had a whole week ahead of me to catch up on some stuff. !!!NOT!!!

We did get Benji's PFT done today; it was up slightly again. His weight was up to 19.95 kilos this morning! That's almost 44 lbs.; he weighed 49 lbs. when he was checked in at St. Joe.

Even though Benji's appetite has improved, his tastes have not broadened at all. It is very difficult to find something he likes! He used to like the meal shakes, not anymore. All he ate at one time was grilled ham, now he doesn't want that; for a few days he liked the McDonalds Chicken McGrills, not anymore. One thing he has always liked and still does (for now) is bacon. Today Benji ate 21 slices of bacon for breakfast and ate another 5 for supper! (It's a good thing Benji's body doesn't absorb fat too well!) I had to pretty much force him to eat anything else except for candy and salt-n-vinegar chips and oh yah, his root beer too. These are some of the very few things that still sound good to him. See why that feeding tube looks more and more appealing? (smile)

Sorry to say, Benji's reprieve from getting stuck has ended. His pic line accidentally got caught in something today and pulled about halfway out of his arm. They needed to go ahead and remove it and inserted a peripheral IV. Needless to say, this didn't go so well. Previously I would have been appalled at his screaming but by now, I figure he has the right. I told him he could scream as loud as he wanted to as long as he holds his arm still so they can get the IV inserted; he did hold his arm still (with a little help from a couple nurses) and he did SCREAM!

The plan is though, to insert the new pic line tomorrow and to use the IV to put him out so he doesn't have to feel anything. Hopefully we can do that, before the antibiotics blow his veins and he needs to get stuck again.

Speaking of tomorrow, Allen and the boys will be coming down in the morning. I'm really looking forward to seeing them but probably not as much as Benji is! Tyler is planning to sleep in the room with him tomorrow night and Benji is very excited about that!

It is so good to know that God is good, all the time, even when we don't understand his ways!

Until tomorrow...

Thursday, November 18, 2004 7:19 PM CST

Today was a lot better again! Benji has not run another temp since yesterday morning, Praise the Lord, and he seems pretty much like himself again today. His color isn’t quite as good and he doesn’t seem to have quite the strength he did but is MUCH better than yesterday!

We didn’t get Benji’s PFT’s done today; they were rescheduled for tomorrow. I was disappointed about that because I was looking forward to seeing if they (his lungs) had improved at all. His weight this morning was 19.6 kilos, down another .1 kilos. At this point, it’s difficult for me to see how we’ll be able to avoid putting in a feeding tube. He just can’t seem to get his weight back. I’m feeling less concern about that at this point though, many of the staff here say that the CF kids who have them, seem to do better because they get the nutrition they need. Most of them do a slow drip overnight (at home) and then can kind of eat as they like the next day, without constantly needing to be hounded to eat. I must say, I HATE forcing Benji to eat and for him, it takes all the fun out of eating.

I believe we had a rather miraculous answer to prayer today. We’ve been having a lot of problems with Benji’s pic line; the medication goes in ok but they’ve been having a difficult time drawing blood through it. They’d been doing all they could to get it to work but it just didn’t seem to cooperate.

They need to be doing blood draws and it has been so wonderful to have that pic line; it means Benji gets “stuck” so much less. Getting stuck is Benji’s greatest fear and he cooperates so well with everything else but, when it comes time to get stuck, he loses it. The last couple times, he’s actually started to hyperventilate and yesterday morning when they needed to do one while his fever was so high, he began to panic and cry as soon as he knew what they were going to do. During the draw he screamed out, “I just want to sleep, I don’t want to get poked!” And the last while he always yells “my bone, my bone, you’re hitting my bone!” I don’t know what he’s feeling and the nurses all say that there’s no way they’re hitting his bone but it is almost more than I can take to see him so terrified and in pain! Even though I’m sure it would hurt much less if he could just relax, that doesn’t seem possible for him right now and I know the pain is very real for him, even if some of it is psychological!

When they told me yesterday that they needed to put an IV in him because his pic line wasn’t working right, I pleaded with the Doctors to not stick him anymore than absolutely necessary. I told them that if there was no other way around it, then of course, it would need to be done but if there was any other way, I wanted them to do it that way.

The doctors are concerned that the infection he has is from bacteria is his pic line; if it is, the old one will need to be pulled. I understand that, and since they’ve been having such problems with the old one, it makes sense to put in a new one. That is what I asked them to do instead of an IV, since IV’s blow his veins so quickly and need to be redone nearly every-other-day. I guess though, they won’t be able to put in a new pic line until they know for sure that he doesn’t have infection in his blood.

The doctors were very nice when I expressed my concern and said they would do all they could to not stick him more than necessary. One of the doctors came back later and told me that they were going to try one more time to get his pic line to draw, but if it didn’t, as long as they could still give him his meds through it, they were just not going to do any more draws until Friday, when they would know for sure if there was infection in the blood. He also said he had let everyone else who was going to be working with Benji or who was on-call, know that they were not to put in the IV unless they couldn’t get his meds to infuse. He also said, they were going to be sure to coordinate all of Benji’s peripheral blood draws (those that need to come directly from his arm) so they wouldn’t need to do new draws as often. I really appreciated that!

After working on the line some more, late last night, they were still unable to draw blood through it, but since it was still flushing well, they were able to continue with the infusions. Later this morning our nurse came in to give Benji some of his meds and in the process, pulled back a bit on the syringe and…drew blood! She did two blood draws through his pic line today and it worked just fine. No one has any explanation for it but I choose to believe God was giving Benji a reprieve. It would be so awesome if they didn’t even need to change his pic line! That’s something specific to pray for.

Thanks for the millionth time for all the notes you are sending; I’m still just as touched to read them now as the very first time! We can never thank everyone enough for all the support. We love you all!

Until tomorrow…

Wednesday, November 17, 2004 10:06 PM CST

Good evening. We come this evening with some not-so-good news. After 10 days with no temp, Benji spiked a temp of 104 this morning; he also had some vomiting and diarrhea as well. They drew some blood again for testing and the preliminary test results showed his white blood cell count was over 30,000; the Doctor said they don’t like to see it over 14,000. As I understand it, whenever the body senses an infection, it immediately raises it white cell count to fight it off. Benji is once again fighting an infection and the preliminary results show that it’s most likely a bacterial infection.

I guess there is also a viral “bug” going around the hospital which involves vomiting and diarrhea but no fever; just this morning 2 doctors and 3 other staff went home with it; this is one possibility for what he may be dealing with. Some other possibilities are that his pic line is infected or that one of the “bugs” he has in his lungs was being taken care of with one of the discontinued antibiotics and, has flared up again since that antibiotic was stopped. The doctor did begin one of those antibiotics again today.

Benji slept most of the day but woke up around 4:00 this afternoon and gradually became much more like himself again. He seemed pretty normal by suppertime when my good friend Gayla came to see us. She brought us some carryout from Red Lobster (which I ordered, but decided seafood is definitely better when eaten fresh) and it was good to have her here for a little while.

Benji didn’t get weighed today since he was feeling so bad and I’m guessing his weight might be down a little tomorrow since he didn’t eat as much today.

He’s complaining right now that he feels sweaty again; I’m afraid that might mean another fever coming on. Please pray that whatever is causing this could be found and taken care of soon or that it would just disappear! The fever this morning was especially difficult to accept because he was doing so much better and it felt like we were on the home stretch.

Could I also ask you to remember me in your prayers? Since I have a tendency to carry stress in my neck and shoulders and it seems the chair-beds here are not particularly kind when used for long-term sleeping, I’ve developed some huge knots in my neck and shoulders and have been struggling with headaches the last week.

Goodnight to you all,
Until tomorrow…

Tuesday, November 16, 2004 10:04 PM CST

Good evening everyone,

I’ve been without a computer for a few days and have felt pretty disconnected. I have been so used to checking the web page a couple times-a-day and was so happy to get back on-line this evening.

When Benji was weighed yesterday, he had gained 1 ½ lbs. since checking in at Riley. He was up to 19.8 kilos or almost 44 lbs. This morning he was back down to 19.7 kilos, which I was disappointed to see; he may have some ups and downs, but as long as he continues to trend upward, that’s a good thing.

Benji’s appetite has continued to be much better ever since he’s been getting Prednizone, a steroid. I guess that’s one of the good side effects from that medication. He’s been eating at meal times and even in between. It seems like his weight should be climbing rapidly with all that he’s eating!

This morning when I spoke to the Dr., he said it’s going to be pretty difficult to know how to plan until at least the middle of next week. Maybe by then we’ll have a better idea of what we need to do yet; if he does need a feeding tube, we’ll have that put in before we leave here and we’re really hoping his lung function tests will have dramatically improved by then! As Allen said yesterday, his PFT’s were slightly higher and they have been very gradually getting better, however, the Dr. would like to see them quite a bit higher.

We changed rooms today. The room we were in was actually meant for two kids but since Benji is in isolation, they could only use it for one kid; they were really full today and asked if we would be willing to move to the private room next door, so the room we were in could be used for two kids. We said sure, or at least I did; Benji wasn’t very excited about the idea. Since we’re moved and settled in though, he likes the new room ok. Our new room # is 3823. The phone # for this room is 317-274-9332.

Benji’s becoming so rich here in the hospital we’ll probably never get him home. A couple weeks ago he had painted a little piggy bank that the activities people had brought him and you may recall that Allen had told him he would give him a quarter every time he eats. Well, some others have decided to add to his stash and he has been eating a lot more; today he counted $58! Even his respiratory therapist gave him a $1 today. I guess that makes $59 now. He’s got a birthday coming up in about 3 weeks and I told him he’ll soon have enough to buy his own birthday present; he didn’t think that was such a good idea.

I also enjoyed being home a few days this weekend although this is beginning to feel a little like home too for now. It was very good to be able to see Aaron, Tyler and Cory; Aaron and Tyler had a basketball game on Friday evening and Cory and Tyler had Bible Quiz meet on Saturday morning. I was glad to be able to be home for that. It will be so nice when we’re all back home again!

I was looking back on some of the earlier journal entries and was reminded of some of the things Benji was battling with that he’s not anymore. H almost never coughs anymore, he hasn’t had a temp for over a week, nor has he had to have any oxygen for about a week now. These are all praises.

Keep praying for Benji’s lungs, that they would not be too damaged! Once lungs are damaged, they can’t be repaired.

Thanks once again for all your support and especially for all the prayers that have been said on our behalf.

Until tomorrow…

Monday, November 15, 2004 8:01 PM CST

Good Evening,
I’m writing this from home because Cindy was not able to get a laptop at the hospital to get this done.
Benji had a PFT today and the results were about four points better than last Thursday! It keeps getting better each time we test. He also had a CAT Scan today however; we don’t know the results from that yet.
It was very nice to be home for the weekend with Cindy, Cory, Tyler, and Aaron. It felt a little empty without Benji but it was a much-needed weekend with the others. It was also very good to be in church on Sunday. It felt like a long time since we had been there. It was so nice to see all of you!
Benji keeps eating a little more each day. He is telling us he is hungry more and more, which is music to my ears! We will keep being patient and anticipate the day when he can come home!!
Until later…

Sunday, November 14, 2004 8:24 AM CST

Good morning,

I realized late last night that I forgot to update this. It is a beautiful Sunday morning and we are both looking forward to going to church together at home! Cindy’s mom (Betty Troyer) is staying with Benji this weekend to give us a little breather. We are really appreciating that right now!
I called down to the hospital this morning to see how the night went and Cory answered! He went down yesterday with Jerry and Corine. Benji had asked if Cory could sleep beside his bed on the chair while he was there. I know Cory was looking forward to sleeping in the Hotel with Jerry and Corine’s family also. I left it up to Cory what he wanted to do and he decided to stay at the hospital. I know that made Benji feel good and I was proud of Cory for making that decision.
Yesterday was a little more difficult day in the beginning. Benji woke up with four people around his bed doing his treatment. One person was showing three others how to do it. The person showing the others was a rather big man who was using his hands to pound on his back instead of using the soft percussion cups. I heard Benji say a couple times that it was hurting and I was busy with some other things and should have asked them to use the cups. He was complaining for the rest of the day that his back and sides were hurting. Last evening his uncle Sylvan and Connie came down and then Sylvan rubbed his back and his sides until Benji said it didn’t hurt anymore. He also was feeling dizzy and had a headache for a while. By evening he was feeling very good and was talking a mile a minute again. I’m sure he is very much enjoying having his lifelong playmate (Cory) and his cousins Jasmin, Reygan, and Keesha there giving him company.
I took him down for a chest X-ray in the morning and hope to find out the results tomorrow. (Monday)
Cindy will be returning tomorrow for most of the week. I will be staying home and try to catch up around home.
Until later..

Friday, November 12, 2004 2:49 PM CST

Hello everyone,
Today has been a pretty good day! We started with a good breakfast of biscuits and gravy and a meal shake this morning followed by veggie soup and a meal shake at noon.
One of our vendors for AirTite came down today to take me out to lunch and then brought Benji another present. We feel so blessed with all the caring people surrounding us.
The nurse weighed Benji today and it doesn’t look like he gained anything yet:(. We will keep trying. Benji has been a little more willing to eat than he had been. I’m guessing he feels hungrier than he used to. He is such a blessing when I think about how he doesn’t complain about much pf anything. He just takes all of this in stride and keeps being such a trooper. Yesterday when I came down to the library to write my journal I had asked him to close his eyes and rest a little bit. When I returned to the room he was sound asleep and slept for 3 hours! I was reminded of his cooperation last night again when I was trying to sleep around 11:00 and the room next door had a child in it that was screaming at the top of her lungs. (For a long time!) I soon was able to tune her out and go to sleep. I only woke up once during the night to help Benji go to the bathroom. I did not hear him cough once all night! What praise!
Indy and I were speaking with a mother of a small child (I think 18 months old). She was telling us how she had (I think 12 operations) already and isn’t finished yet. I spoke with her in the afternoon again and she was in surgery for a Bronchoscopy. (spelling?) She later told me she found out she has three more surgeries that she needs soon! I can’t imagine seeing my child suffering like she has seen her child suffer. Even though it wasn’t easy at all seeing Benji go through what he went through.
Thank you again for all the prayers and encouraging notes! If you get tired of us thanking you all you can just tune us out! It feels like a thank you isn’t nearly enough at times like this and yet we feel that is all we have to offer in return.
Until later……….

Thursday, November 11, 2004 1:34 PM CST

Hi everyone,
I’m going to do this earlier today because our laptop computer is on the blink and I have to use the computer in the Library.
I came down here last evening and will be here until Saturday. Cindy went home this morning and will be coming back on Sunday evening. Cindy’s Mom and Dad will be coming down to be with Benji on Saturday and Sunday.
Benji and I just returned from the pulmonary department for his PFT (Pulmonary Function Test). The results were a little better than Monday. We still have a ways to go to get the lung capacity that he needs to be healthy and active. The Dr has started him on steroids to help his lungs fight off any allergic reactions he might have from all the medications. A side benefit to this is that he will probably have a bigger appetite. He ate really well at noon today.
Well, as hard as I try I just can’t write as long as Cindy can :) Anyway… keep praying for us as we travel back and forth. The boys seem to be doing well at home aside from the small spats that come up now and then.
On Monday and Tuesday evening I was blessed to be able to pull out a dish from the freezer and pop it in the oven and eat it. This has been very nice! (Thanks church ladies)
Blessings......

Wednesday, November 10, 2004 8:42 PM CST

Good evening,

Today was another good day. We've gone more than 48 hours with no temp and two days with no oxygen.

Tomorrow we're going to be doing another PFT and hope to see that a bit improved. I thought Benji seemed to have a bit of an appetite this morning which he denied, but it's hard to tell if he says that because, that's kind of what he thinks he should be saying, or if that's what he really feels. Either way, we've been getting plenty of calories into him but he's only gained 1/2 lb. back. That means he still weighs 6 lbs. less than when we came to the hospital. Our main objectives now are to get his appetite back, gain some weight and get his lungs in better shape so we can go home.

Benji's having his respiratory treatment right now. He really likes this therapist he has right now; he's a young guy who is really playful with him and likes to tease him. Since Benji spends so much time in his bed without a lot of interaction or playing with others, I think he's good for him.

Benji's day has been spent putting together a huge Lego project; he's really been into Lego's the last week and has put a lot of different things together. One of the teachers also came in to help him with his school work again.

Thank you all for all the gifts you have sent for Benji; he's gotten so many I told him that pretty soon we're going to have to rent another hospital room, just for his presents.

Until tomorrow...

Tuesday, November 9, 2004 7:38 PM CST

Good evening,

Today was a day very similar to yesterday. Busy, busy, busy!

I don't have much new to report, nothing new from the doctor and no new PFT's today. Benji didn't run any temps in the last 24 hours and needed no oxygen today. Good news! He does still have a cough but nothing like it was before. He tends to have periodic fits of coughing which sound very loose and no longer painful.

By the way, yesterday I talked about how often the nurses come into the room to give meds; today I counted. They give 16 doses of IV meds to Benji each day; if you multiply that times four, the number of times they come in to do the flush or the meds, (see yesterday's journal entry for more explaination)that's 64 times that the nurses come into the room in a 24 hour period just to administer his IV antibiotics! I guess we'll need to rest up when we get home. (smile)

Since I don't have much to update on Benji's condition, I'll update you on the puppy situation in our room. Benji has had a pretty special puppy friend named Hutch, that his uncle Sylvan gave him; his Grandma and Grandpa Troyer also gave him a puppy named Rescue, while he was at South Bend. These two have been in his bed most of the time since and yesterday, in the mail, Benji got a package with three of the cutest little baby puppies! (Thank you Karmin.) We think Hutch and Rescue must have had puppies. (Although, we may need to change the name of one of the big puppies to a female name) (smile)

Allen is planning to come down tomorrow afternoon and I plan to go home on Thursday and come back on Sunday evening. I guess Allen will be coming home also on Saturday while my Mom and Dad come down to stay with Benji for the weekend. Saturday night will be the first and only night that Allen and I will both be home at the same time in three weeks! It will feel good to be a bit more "normal" for at least 12 hours and I don't have to worry about Benji while I'm there; I'm sure he'll be well taken care of! It's amazing how much easier it is to leave for a couple nights when he seems so much better!

Until tomorrow...

I got alot Legos and I got little popes (puppies) from my friend Karmin from.Benji (written by Benji)

Monday, November 8, 2004 10:29 PM CST

Today was another day that just flew by! You’d think that the days would be long in here, but there is so much activity going on and people coming in and out of the room all day that we really have very little uninterrupted down-time. I’ll try to give you a snapshot of our day:

Around 8:00 the first doctor usually comes in; it’s not unusual for us to see 3-6 doctors each day. Since we are working with both the ID docs (infectious diseases) and the pulmonologists (lung docs), we have even more than we might normally have. The first one(s) is(are) usually in around 8:00 and the others come in at various times throughout the day, usually in the morning but not necessarily.

Four times a day the respiratory therapists come in, usually beginning around 9:00 and the last one ending around 9:00 to 10:00 in the evening. They are the ones who do Benji's nebulizer or "breathing" treatments and his percussion, which is the pounding on various places on his lungs to knock the mucous loose.

Sometime throughout the day, the physical therapist comes in to help Benji do some exercises. One of the departments comes in with a gift, like Legos, or some other kind of activity for Benji to do. This department also has teachers who come to the room to help with his school work; this is something we are just beginning since he didn't feel well enough before.

The nurses are constantly in and out with his meds; he's down to five antibiotics now but if you consider each one being given two to four times each day, that's a total of 10 to 20 times per day the nurses are administering drugs. Then... three of the antibiotics are IV's; each of these have to be flushed before and after infusion so that means the nurse needs to come into the room four times with each infusion: before flushing, between flushing and medication, between medication and flushing and after flushing. These are electronically infused so each time one is finished, an alarm sounds; that's three alarms per dose so there are many alarms each day! All this does not take into consideration any vitamins or other "PRN" (as needed) medications he might get. The nurses also have to check his vitals regularly.

It seems like they've barely taken one meal tray away (uneaten) before they're bringing in another. Someone wants to know what he's eaten so far today, how often has he gone to the bathroom and how much? Now it's time to weigh him and when he's finished with that he needs to be taken to the other end of the hospital to do his PFT's. After we're back, his bioximeter probe (the thing on his finger that keeps constant record of his oxygen level) isn't working right so it needs to be changed. Then it's time for a blood draw. And what's this? A package for Benji; someone sent a gift and here's some cards as well.

Whew! Don't feel bad if you didn't make it through all those details, it was a lot for me too.

Information on tests or reports has not changed, but the Dr. did mention "several weeks" this morning when asked what to expect on length of stay. That is unless Benji has a sudden drastic improvement in his lung function and weight-gain. He is also still running sporadic low-grade temps; he had one again, early this morning.

His PFT (lung function test) was only very slightly improved today. His vitals are usually good but still needs oxygen quite a bit. Some days he can go most of the day without then the next it might be down again. He's had it on and off several times today, as his levels fluctuated.

I'm (Cindy) doing well down here. I'm getting to know some of the staff and have made myself at home in Benji's room. My spirits are good, that's not so difficult when I remember how things were a little more than a week ago and the improvements we've seen in Benji since then. Riley is a good place to be to help keep things in perspective; when I hear of the trials some others experience, I think this is really no big deal! Even a couple months in the hospital is nothing compared to most of a year, or never bringing my child home! We have much to be grateful for!

Continue to pray for Benji's appetite and the restoration of his lungs. When I hear how many of you are praying for Benji and for us, I think the gates of heaven must be flooded with people interceding for us. I feel so humbled and blessed at the outpouring of support we have received. Thank you!

Could I also ask you to remember someone else in your prayers? This morning I ran into someone from home who's little newborn grandchild was brought down here from Goshen hospital, just yesterday. The baby's kidneys were not completely developed and they came down here with the hope that something could be done; the baby was sent back home today without much hope for her survival. The parent's names are Steve and Luetta Miller (I believe that's her name) and the baby's name is Michelle. The grandparents are Bert and Carolyn Miller, Carolyn used to work for us when we had Dutch Cleaning.

I can't think of anything else new to relate, so I guess I'll just say,
Until tomorrow...

Sunday, November 7, 2004 9:57 PM CST

Good evening everyone,

I’m going to have to make this quick because this computer keeps shutting down on me.

I (Cindy) was home from Wednesday to Friday and couldn’t believe the improvement in Benji when I walked into the room on Friday evening. He was sitting up in bed, talking (a lot) and playing quite normally. God is good!! (I have wanted to say that for a while but felt a bit uncomfortable about it since I hadn’t said it when Benji was so sick; however, I do believe God is good all the time even when we don’t always understand everything.)

Today was also a very good day. Benji ran a real slight temp last evening but none overnight or today. He did eat some this morning but threw that up again. He’s managed to keep down the rest of what he’s eaten today. As of this morning he’s gained .1 kilos since we’re here. Not so good! His piggy bank is filling up though; when he counted today, he had $21.52! He has been trying very hard to eat but it sure helps that 2 of his uncles each added a $5 bill. One thought his dad was kind of cheap, only giving him a quarter.

His spirits are great! When his nurse came in on Friday night, (she was the same one he’d had the previous Friday night) she couldn’t believe the difference in him. His energy level seems almost normal although, since he hasn’t been on his feet much lately and since he’s lost so much weight, he’s still pretty weak.

Still no new news about his diagnosis or how long he needs to be in the hospital, but his meds are now down to five antibiotics. We do know that he’ll need to continue on two to three of those for six months to a year but fortunately, at some point, we should be able to finish it out at home.

We had a lot of company today and unlike last Sunday, visitation didn’t need to be restricted. Again, what a difference a week has made! Last Sunday evening, Benji was so sick he barely wanted to see his grandparents, this Sunday he felt well enough to fight with his brothers! (For once that’s kind of a good thing)

Shortly after lunch, Daryle and Mandy Bontrager, along with their children came to visit. Later on, my brother Jim, his wife Shirley and their children came and brought Aaron and Tyler with them. (By the way, Benji was quite disappointed when I didn’t bring them along back on Friday, so he was very glad to see his brothers today.) Then a while later, Allen’s parents, his brother Mel, and his brother Marion, his wife Susan and a few of their children, also came. It’s so nice to have so many friends and family that care!

Thanks for all the cards and gifts you’ve been sending! I told Benji we’ll soon need to get another room just to store his gifts!

It’s also quite incredible to read all your notes to us! To see how many people care and are praying for us: those we know well, some we don’t know so well, some we know but seldom see, and even some we don’t know at all, it is all so overwhelming!! Thanks to all of you for taking the time to let us know!

Until tomorrow…

Saturday, November 6, 2004 9:28 PM CST

Hi everyone,
We enjoyed a day with Cindy today. It was so good to see her again. I am looking forward to seeing Aaron and Tyler tomorrow. I will be going back home tomorrow evening and returning Wednesday evening. Cindy will stay here until then.
Benji has not had much change in his recovery. He continues to have fevers of 101.5 occasionally. He also still needs oxygen some parts of the day. We will continue to be patient for his recovery. He still does not have the kind of appetite that we would like to see. Cindy and I had a much needed dinner together this evening at Red Lobster. We had left my phone with Benji in case he needed something from us. He called us before we returned and said he was hungry so we brought him some dinner.
I don’t have much new news from down here. We do miss being home and being together as a family. I look forward to feeling a little more “normal” when we bring him home. I was reminded today as I was walking from the Ronald McDonald house to the hospital how awesome God is. He has given us so much to be thankful for and so much to praise him for. I was thinking how much has happened in the last few weeks and how he has carried us through. He deserves all the praise and gory for how Benji is doing. Benji will only be as healthy or as sick as he allows him to be. It is his will that we seek and he who we want to praise and worship. I miss seeing my church family. Pray for us as we wait patiently.
Until tomorrow……

Friday, November 5, 2004 7:41 PM CST

*Earlier today
Hello again….

Last night was a slightly more difficult evening and night. Benji had a fever of 101.5 for a short time and also had a higher respiratory level. His breathing seemed to be quite a bit faster and very sporadic. We put him back on oxygen for the night and that seemed to help somewhat. By 6:00 this morning his oxygen level was down even lower so they had to turn it up even higher. Today he had to have the oxygen most of the day.
The Dr said it may be a good sign that his mucous is breaking up in the lungs and he is able to move it around more by coughing and it may be obstructing a main airway and in time he will be coughing it up. We will be monitoring him closely for the next 24 hours to see what happens.
Nothing new from the Dr’s as far as what bacteria he has for sure or how long we will be here. Cindy is on the way down here for the weekend and probably for the 1st part of the week while I go back home to catch up on business stuff.
I was able to get a room at the Ronald McDonald house for the weekend. Hopefully it will help us rest up a little bit.

*7:30 PM
Benji is doing well this evening. He has had a good supper and is feeling well. He is very alert and playing with his toys in bed. His breathing is still at a higher rate than it should be but we will see what the Dr says tomorrow.
Keep praying for his lungs to be healed from any lung damage from this infection. We are still unclear how much damage he will have and how or if it will change his lifestyle. Thanks for all the notes!!

Thank you for the messages. Come vizit me somtime. I kant wate to go back to school!
Do not forgit about the bible! From Benji
(Benji wrote this on his own)

Thursday, November 4, 2004 8:35 PM CST

*Early Afternoon

Hello everyone….
Today has been an uneventful day for the most part. We had a very good night last night. I actually only woke up several times during the night from Benji’s coughing. This morning we both felt very rested and alert! The Dr’s were in today and haven’t given us any new information for the most part. The Infectious Disease Dr was happy with his progress in fighting the infections in his lungs. However the Pulmonary Dr is not real excited about his lung function. We had another PFT (Pulmonary Function Test) done today and the results were better than on Monday, however not near what they need to be. I keep being encouraged each day that passes when I see him smiling and relating to the nurses and me. He often would like to smile when he thinks something is funny but for some reason it’s not very cool to show too much emotion yet at this point! He has had a decent day in the eating category. He ate a pancake and some bacon this morning and asked for a Happy Meal from McDonald’s for supper. I am waiting until his treatment is completed to give him his supper. Last evening he ate about 45 minutes before his treatment and he had to cough so much that he lost his supperL. His treatments are being very effective the last few days. His cough is much more of a loose cough than the tight cough he had before we came here. The Dr’s are encourage by that.
Someone just came to the door and handed us a bag of goodies for Benji to pass the time. He got Lego’s, a football, basketball, and a baseball. (Nerf) Looks like we’ll be shooting some hoops and playing with Lego’s this evening! He also got some more Hot Wheels.
The days seem to be getting a little longer for him since he feels a little better. It is so encouraging to read all of your little notes. Benji looks forward to hearing from all of you, especially from all his friends from school and his cousins. I keep wondering how people cope with all the stress without the support from family, friends and church. What a blessing it is to be a part of the family of God and our community!

*8:00 PM

Hello again…
Benji had his Happy Meal, which was more than his little stomach could handle yet. He was blessed with a Game boy this evening from one of the departments that give activities to the kids each day to keep them from getting too bored.
The nurse told me Benji had 2700 calories yesterday exceeding the 2000 that we needed. Praise God! Well we’re going to get Benji’s treatment done and start winding down.
Until next time…….

Wednesday, November 3, 2004 5:06 PM CST

Just a partial update before I take off for home today:

Benji did run a slight temp last evening but as far as we know, it didn’t get any higher than about 100.4. He went without a temp all night and this morning ate a cheeseburger from McDonalds!

The doctor told us this morning we need to get 2000 calories per day into him or we’ll need to put in a feeding tube. One thing I didn’t realize before was that once that tube is put in, it stays in. So… it’s going to be a chore but if he can at all gain back the weight on his own, that would be preferable. We certainly have our work cut out for us. I thought Allen came up with a great idea; he told Benji he’d put a quarter in his new piggy bank every time he eats. That seems to have helped.
Cindy

I wanted to add this last evening but after having my journal entry wiped out twice just as I was about finished, I decided to drop it for then. Since I was feeling so lighthearted, I decided to share a joke with you that one of the nurses told me:

These three sisters all lived together; the oldest was 98 the next was 96 and the youngest one was 94. The 98 year old went upstairs to take a bath, but as she was climbing into the tub, she suddenly forgot if she was getting in or out. So, she called to the 96 year old and asked her if she had been getting in or out of the tub.
The 96 year old started up the steps to help her, but on the way up she forgot if she had been going up the steps or down the steps. So she called to the youngest sister and asked her if she was going up the steps or down the steps.
The youngest one sighed and said, “I’m so glad I’m not like them; knock on wood.” (And she knocked on wood.) About that time the 96 year old called to her again and she answered, “Hold on, hold on, I’m coming… as soon as I get the door.”

===========================================================
A short update for this evening: Cindy has gone home for the next several days to spend time with the other three boys. She deserves some much needed rest! Benji ate a good supper this evening. We were up to about 1250 calories for the day after supper and thought we could hit approximately 1600 for today. Then, the nurse came in to give him his percussion treatment and caused him to cough a lot and eventually lost his supper:(. We will keep trying to get him to eat. Pray that he will get his appetite back soon and that his skinny little body will grab on to all that food and start beafing up a little. No fevers today!

I am so moved by the mail from all of you. I have dificulty reading them to Benji without all the tears and all the other emotions. Anyway, thank you for all the notes, prayers, and all your friendships! God will surely bless you for it. Until tomorrow….. Allen

P.S. Also please keep praying for Aaron, Tyler and Cory. Also check out Benji's photo!

Tuesday, November 2, 2004 8:49 PM CST

Tuesday, November 2

Well, this is the third try to get this done.
Twice before my computer shut down when I was nearly finished; this time I’m doing it first on Microsoft Word, in case it happens again.

Praise God for answered prayer!

Short Version:
(For those who want more details, the longer version is below.)

There was a marked improvement in Benji today and he has not run a temp for 24 hours! He was awake a lot of the day, he was more alert, his eyes were brighter and I even saw a few smiles.

Longer Version:
I saw a marked improvement in Benji today! He has not had a fever for more than 24 hours, and he had a pretty good night. His coughing fits still wake him up at times but with his temp remaining fairly stable, he should be able to sleep better and recover more quickly. Those fevers really wiped him out.
He was awake by 8:00 this morning and was awake most of the day except for a few hour nap this afternoon. He was much more alert and a bit more talkative today and I saw some brightness in his eyes and even got a few smiles out of him.
Each weekday here at Riley, they bring in an activity for the patients to do. Yesterday, he showed no interest so I was pleasantly surprised today, when he seemed eager to do the activity. I’m hoping to get a picture of him painting his ceramic piggy bank into his photo album yet tonight.
He also asked about his brothers this afternoon. When I asked if he’d like to see them, he said he would. This is a great sign since it’s been a while since he’s shown much interest in having visitors.
The docs didn’t have any new information today; they still don’t have any test results. He has also tested positive for some bacteria in his blood, which may mean the infection has spread throughout his body. It’s amazing how much easier it is to be patient for answers when Benji’s health is improving.
Probably the biggest concern right now is Benji’s lack of appetite. The second time tonight that I was updating the journal, right when I got to this part Benji said, “I’m hungry.” Those words are music to my ears!
I went to find him something to eat; the food from the kitchen here is so bad, I don’t even attempt to try to get him to eat it. (Though we have a lot of positive feelings about this hospital, this is probably my main complaint; the food is worse than the stereotypical ideas we all have of hospital food.) But I have brought in all the foods I can think of that he usually likes and he did eat a few bites of the grilled ham. The ham is the only solid food he’s had the last few days; the only other food he’s getting is through the meals shakes we give him. Those contain 330 calories each and we’ve been getting 3-a-day into him.
This morning I asked the doctor about the feeding tube; as of right now, I think we’re going to give it a week and see how he’s doing. If there’s no improvement, we’ll probably need to put in the tube. This goes directly into his stomach and I was told that he would have a valve on the outside, like that on a beach ball. We’re hoping he doesn’t need to do this, but if he doesn’t eat, we won’t have a choice.
Allen came this evening and is going to be here through the weekend; I plan to be at home Wednesday and Thursday night and come back down on Friday if Benji doesn’t get worse again.
He, Allen, brought some really neat stuff along; some gifts from some friends and a video that Conrad Showalter made of Benji’s 1st grade class at school. He went in on Monday and recorded some of their activities and asked the other kids what they missed about Benji. It was so touching to see the light in his eyes and the smile on his face as he watched that video. Thank you Conrad.
The website is such a blessing too! Isn’t the “caringbridge” idea so neat? We are going to try to get some pictures up tonight yet, if we have the connections and software we need. Thank you for all the supportive messages you have sent to us. Today when I read the messages to Benji, I saw his eyes brighten and at times he smiled as well. I would think staying in touch with others like this and through the video will aid in his recovery.
I’m feel pretty light-hearted myself this evening! Thanks again to all of you for all the various ways you are showing your love and support to us all! Continue to pray for us.
Until tomorrow…

Update: Sorry, there will no photos added tonight; we didn't have the right cords.

Wednesday, November 3, 2004
Just a partial update before I take off for home today:

Benji did run a slight temp last evening but as far as we know, it didn’t get any higher than about 100.4. He went without a temp all night and this morning ate a cheeseburger from McDonalds!

The doctor told us this morning we need to get 2000 calories per day into him or we’ll need to put in a feeding tube. One thing I didn’t realize before was that once that tube is put in, it stays in. So… it’s going to be a chore but if he can at all gain back the weight on his own, that would be preferable. We certainly have our work cut out for us. I thought Allen came up with a great idea; he told Benji he’d put a quarter in his new piggy bank every time he eats. That seems to have helped.
Cindy

I wanted to add this last evening but after having my journal entry wiped out twice just as I was about finished, I decided to drop it for then. Since I was feeling so lighthearted, I decided to share a joke with you that one of the nurses told me:

These three sisters all lived together; the oldest was 98 the next was 96 and the youngest one was 94. The 98 year old went upstairs to take a bath, but as she was climbing into the tub, she suddenly forgot if she was getting in or out. So, she called to the 96 year old and asked her if she had been getting in or out of the tub.
The 96 year old started up the steps to help her, but on the way up she forgot if she had been going up the steps or down the steps. So she called to the youngest sister and asked her if she was going up the steps or down the steps.
The youngest one sighed and said to herself, “I’m so glad I’m not like them; knock on wood.” (She said as she knocked on wood.) About that time the 96 year old called to her again and she answered, “Hold on, hold on, I’m coming... as soon as I get the door.”

Monday, November 1, 2004 10:56 AM CST

Monday, November 1, 2004:
Benji and I (his mom) had a quiet day today; at least as quiet as it can get around here.
Because of his medication schedule, there are nurses, respiratory therapists or doctors constantly coming in-and-out of the room. One of the nurses tried to make up a schedule for all the meds so he could have as much uninterrupted time as possible. The longest time period is 3 1/2 hours during the night.
Not much has changed with Benji's status today. He has been awake quite abit of the day but pretty weak. He hasn't run any temps today although he did run a couple during the night.
He is still not eating well at all and is currently being sustained by meal shakes and some grilled ham which his grandmother brought for him. There have been a few encouraging times over the last few days that he has actually asked to eat some ham! As of this morning he's gained back 1/2 lb of the 6 1/2 he's lost since being in the hospital.
The subject of putting a feeding tube into his stomach came up today for the first time; if he can't gain weight otherwise, we may need to do that.
Benji played a little Nintendo this afternoon. That's always a good sign since we always know he's feeling a bit better right then.
Benji had a couple lung-function tests today. They were not very good, meaning that he is not able to breath very well on his own.
No one seems to know how long we will be here, though we were told again today that it will probably be quite a while.
Until tomorrow...

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