Monday, October 1, 2007 11:00 PM CDT

Job had a good day today. It was peaceful and he shared a few smiles and hugs. Mostly he slept and ate with not much else in between. He is sleeping soundly now and I pray that he has a peaceful night.

Tina

Sunday, September 30, 2007 9:00 AM CDT

>>>> NEW PHOTOS ADDED <<<<

Psalm 119:81 TLT
I faint with longing for your salvation; but I have put my hope in your word.
119:82
My eyes are straining to see your promises come true. When will you comfort me?
119:83
I am shriveled like a wineskin in the smoke, exhausted with waiting. But I cling to your principles and obey them.
119:84
How long must I wait?


Exodus 14:13 KJV Fear ye not, stand still, and see the salvation of the LORD,



His hemoglobin is at 7.3
CO2 161 and PH 7.26
They are going to give a blood transfusion today. No emergency, but multiply reasons to give transfusion... his O2 was only 45

The will of God will never lead you,
where the Grace of God cannot keep you.

Prayer changes Things, Please continue to pray as we wait upon the Lord,
Love to all,
Grandma

Saturday, September 29, 2007 9:18 AM CDT

2 Cor 6:2 "...NOW IS THE TIME OF GOD'S FAVOR, NOW IS THE DAY OF SALVATION."

Today is the day of the Salvation of the Lord!

Friday, September 28, 2007 8:20 PM CDT

Hey all. Job had a good day today. God blessed him with joy and with a trip to the garden. He has been passing out hugs and kisses also I hear. He misses his friend Bradly Williams and was asking about him yesterday.

I want to share one of my favorite scriptures with you. I had forgotten about it until mom reminded me of it this morning and I remembered how much I loved it. I love it because it shows a passion for God regardless of these stinking circumstances that we may be experiencing at the moment. After it, please read on because I rewrote my own version of the same passage:

Habakkuk 3:17-19 NIV
Though the fig tree does not bud
and there are no grapes on the vines
though the olive crop fails
and the fields produce no food
though there are no sheep in the pen
and no cattle in the stalls
Yet I will rejoice in the Lord, I will be joyful in my Savior.
The Sovereign Lord is my strength;
He makes my feet like the feet of a deer,
He enables me to go on the heights

Okay here's my personal version:
though anxiety does not cease
and there is no smile on Job's lips
though there are no visitors who come
and no sleep to be found
though there is no energy to play
and no hugs from my boy
Yet I will rejoice in the Lord, I will be joyful in my Savior.
The Sovereign Lord is my strength;
He makes my shoulders strong,
he enables me to carry the burden of my son.

God bless you all,
Tina

Thursday, September 27, 2007 11:20 PM CDT

Today was a peaceful day. Job ate and rested well today. It wasn't until around 8:00 that he really started coming out of his skin and yanking at all his cords and tubes. By 11:15 p.m. he was asleep and resting well. I hope we have a good night.

I have something on my heart that I would like to share. Since Rob and Nicole went home in Aug. It is only Grandma and I here with Job. We trade out every 24 hours, so one of us is at the hospital and the other is alone at the RMH apartment. I have been spending a lot of my alone time at the apartment reading my Bible, praying, and worshipping God. I have really been growing closer to God and understanding the Bible more and more. I am thankful that I have this time with God, but sad that it came at such a high price. Why does it have to take tradgey to drive us to our knees. Well, it doesn't have to. Please, I beg you. To everyone who is reading this message, who has a heart for my family, please take this as a warning. Take my family and Job's suffering as your own tradgey so that it doesn't have to be that way for you. Seek the Lord like you never have before. Please don't get me wrong, I am not saying that tradgey is coming upon you all. How would I know such things. I am saying that it shouldn't take tradgey to get us serious about God.

PLEASE, quit playing around and get serious with God. Repent if you need to. Give you life over to Jesus and allow him to wash your sins away with his shed blood. Others need you to get it together so you can help them find the way. Who knows how many days you have left? Who is promised a tomorrow? Who is close enough to God?

I hate that it has taken my little boy suffering to get my priorities straight once again. I had them straight, but somehow I grew complacent and lazy in my relationship to God. I am thankful for a new fire and passion for God, but mourn that it came at such a high price. Please God, have mercy on me and on poor little Job. Please God, have compassion on Job. Heal him tonight dear Lord, and if not tonight, then we will continue to wait patiently for Your timing, but please Lord, restore his health enough that he has joy and peace without medications. That he can play and communicate and love while we wait to see the Salvation of the Lord in our lives. Please dear Lord, have mercy on us. In Jesus name we beg and plead... Amen

Tina

Wednesday, September 26, 2007 8:40 AM CDT

CO2 = 165 and ph = 7.25

Update Sept 27 Thurs.

CO2 = 127 PH = 7.36

We moved to Room 14 (its bigger)

Well, Praise God that we are still standing on the cliff. I sure would like to back away from the edge, but you know how kids are. Job likes standing as close to the edge as he can possible get. Its a good thing that the Lord has that guard rail up for his protection!!!

I wish things were different here. I wish Job was already healed, but he isn't yet. We are praying that it will be soon. Grandma and I were both spending time with God yesterday morning and He put it on both of our hearts through the Bible to pray for Mercy.

The scriptures that He showed me were:
Matt 5:7 Blessed are the merciful, for they shall be shown mercy.
Rom 9:15-16 For he [God] says to Moses, "I will have mercy on whom I will have mercy and I will have compassion on whom I will have compassion." It does not, therefore, depend on Man's desire or effort, but on God's mercy.
(Also see Rom 9:18 and Ex 33:19)

The scripture that God showed Grandma was:
Psalm 28:1-2 A psalm of David. O Lord, You are my rock of safety. Please help me; don't refuse to answer me. For if you are silent I might as well give up and die. Listen to my prayer for mercy as I cry out to you for help. As I lift my hands toward your holy sanctuary.

Once we realized that God was directing us both to pray for mercy we were very excited that He was hearing our prayers and directing us on how to pray. Please everyone join us in not only praying for mercy, but showing mercy every chance that we get. For that is the promise... God will show mercy to those who are merciful.

We need God's mercy so much... Job's needs God's mercy.

God Bless,
Tina

Monday, September 24, 2007 4:44 PM CDT

The Nurse just called another Nurse in because she couldn’t wake Job
up.Then after shining a flashlight in his eyes several times and running her nail down the bottom of his foot a few times, not getting a response, they called in a Doctor. The Doctor didn’t get a response either. They Left the room and I kept messing with him trying to get a response. Finally he opened his eyes and looked AT me (not through me. Like he has done some in the past) and then he squeezed my hand gave me a smile and went back to sleep.

Job has been sleeping a LOT lately
And it has been being harder and harder to wake him up.
I know the Doctors have said that Job could go into a coma.

What I would like for everyone to do is pray against a coma.

Our God is able to keep this from happening. Circumstances
doesn’t matter to God. It doesn’t matter what is documented,
or what has happened to the hundreds before Job.

God can keep Job from going into a coma.

Thank you For all of you Prayers

Jesus Loves each and every one of you and knows all you have done for the McCully family. We are truely blessed by all of you. Lots of Love,
Grandma

UPDATE => September 25, Tuesday
Morning blood gases were CO2 = 164 and ph = 7.21
Talking about it being time for the Rapture again.

Monday, September 24, 2007 12:43 AM CDT

Thanks for all yal's encouraging words. Job is doing just fine today also. He sat on the edge of the bed for AN HOUR eating breakfast. He ate two waffles, sausage, biscuit/gravy, cereal and a carton of milk. He wanted a 2nd box of cereal but I told him he needed to let all that other food settle first.

He slept well last night and is communicating well today. His morning gases were CO2 = 135 and ph = 7.31 which is a good improvement from yesterday morning.

God bless you all,

Tina

Monday, September 24, 2007 0:13 AM CDT

I bet yal get tired of reading the same thing day in and day out. Co2 was this and that. He talked or didn't. He ate this or maybe he didn't eat anything. On and on we type and type... none of it really amounts to anything....

Sorry, I wish I had some fantastic news for you, but here we are. Day and night in this hospital room. All the days look the same and so do most of the posts.

God, please bring Job's Miracle quickly. Please Lord, have mercy on us.

Tina

Sunday, September 23, 2007 9:49 AM CDT

This morning gas is PCO2 153 PH 7.27 Veinous
Veinous is a little higher than capillary.
xray looked about the same no air seen in chest walls.
He was hurting last night and about to cry the Nurse asked him where he hurt and he said all over she asked what the number was and he said 10. He was also anxious so she gave him Morphine and Adivan. Plus he is getting Benadryl everytime before the vanctamysin (sp??)
He rested good after that.
Ate pancakes for supper. A banana and bowl of cereal for late evening snack. And for breakfast he ate sausage egg and biscuit, and more pancake, drank some milk and apple juice. Sat up on the side of the bed and fed himself all times.
Now he is back to resting. Just had more Benadryl due to the Vanc...
Talking good acting like JOB. He knows who I am. Which is good. Pleases me.
I look out this window and it is a beautiful day in St. Louis Missouri. a wonderful day for a healing or a transplant whichever the Lord chooses.
Thank you for every Prayer. May God Bless you Richly Physically, Mentally, Emotionally, Financially, BUT Most of all Spiritually
until next time, Grandma

Saturday, September 22, 2007 7:12 AM CDT

He was up at 5:00 this morning eating cereal, feeling good, and talking very clear.

His morning gases were: CO2 = 132 and ph = 7.33

Friday, September 21, 2007 9:36 AM CDT

Job has been holding steady. His gases weren't as good this morning (149 and 7.22), but the has recovered from worse.

The never found any causes for the seizures and have basically concluded that it is due to his chemical imbalance and current illness. The plan is, after he recovers a few months down the road, to stop the anti-seizure medicine.

We are still on the edge of that cliff, I am ready to back away from the edge, but we haven't been able to yet. All the x-rays look unchanged and his blood gases are still crazy.

Thanks for your continued prayers.
Tina

Wednesday, September 19, 2007 7:20 PM CDT

Today was a fine and uneventful day. Job sat up for 45 minutes this morning and fed himself a huge breakfast. A few hours after that then he had some minor anxiety and they gave him a dose of Versed. That kept him knocked out for most of the day. He woke up in pain in the late afternoon and so they gave him a dose of morphine. More snoozing. Then about an hour ago, they gave him benadryl as a pre-med for his vancamycin. More snoozing. Hopefully after that wears off he will get up to eat something. At least he ate a good breakfast. That sure makes me feel better.

He did have the EEG this morning, but we haven't yet been able to speak to the neurology docs about the results.

His morning CO2 was 136 and we are awaiting the results of his evening test. We should be getting the results any time now.

Thank God for another victorous day.

UPDATE => Evening blood gases were CO2 = 139 and ph = 7.25

UPDATE => At Midnight Blood Gases were CO2= 112 PH= 7.29

Blood Pressure has been running low sleeping heavy a little over done on the Versed, Adivan, Benadryl, & Morphine
Blood Pressure 84/26 95/28 114/39

Tuesday, September 18, 2007 11:29 PM CDT

Job started out having a really good day today. It was the best he has been in over a week. Rob and I traded out around noon or so. I came back to the apt and Grandma, Nicole, and I cooked lunch and just hung out for a bit. I commented to grandma about this seemed like the first day of rest that I have had in a while. The air just seemed lighter and a peace rested on us. I really wanted to spend some time with the Lord so I grabbed a book that I had just bought and my Bible and headed to my room. After reading not even one chapter, I just kept falling asleep. I tried to shake it off, but I was overcome with sleepiness. I finally gave up on the book and just layed over and prayed until I fell asleep.

Nicole came into my room saying that something was wrong with Job. It was a little after six, I had slept a couple of hours although it seemed like I had just layed my head down. I ran to the computer and saw what Rob had typed in his IM, "just had a crash please pray, maybe another seizure" and then, "had to give chest compressions, please pray". I couldn't believe what I was reading... chest compressions??? What could be happening. Grandma, Nicole, and I were on our way to the hospital in a matter of minutes.

I was sick in the pit of my stomach. When will all of this end, was my prayer to the Lord. Please bring Job's healing quickly dear Lord. Doubt tried to enter my mind, but I kept trying to remind myself of all the encouragement and comfirmations that the Lord has given me over the last few days. I was shaking as I grabbed the keys and we headed out the door. I couldn't believe that just a few hours earlier I was resting in the peace of the Lord. Then again, maybe that was the reason He gave me rest.

Once we got to Job's room, the doctors had already realized that it was only a seizure and a missing lead line as I explained in my earlier post. Praise God, He brought us through again.

I was just sitting here reminding myself of all the wonderful prayers and scriptures that God has sent to me and my family over the past week. I went through the Guest Book and wrote down every single scripture that was mentioned since last Wed. I have to hang onto every Word the Lord has for me. He is my strength and I am unable to get through this without Him. Praise God for His mercy and grace and praise God for you all, who are allowing God to use you to help us. Who are willing to take time to say a prayer for Job. It is easy to say you will pray, but it is a whole other matter to actually stop and do it. It means LIFE to Job. We are on the front lines of battle and need you help more than ever right now.

May God richly bless you for your unselfish obedience and generous prayers.

Tina

Tuesday, September 18, 2007 9:32 PM CDT

Job had another mild seizure tonight around 6 pm. Right after the seizure started then one of his leads came off his chest and made it appear that his heart had stopped. The nurse gave him chest compressions for about a minute and the "CODE" alarm was sounded and the whole PICU team came running. Rob was there with him and praying for him the whole time. The entire event only lasted a couple of minutes. They soon realized that a lead was off and that his heart was fine.

Once the dust settled, they looked over all his vitals and are convinced that it was a false "code" and was only a mild seizure. Within 15 minutes Job was responding and soon after that he was back to himself. He even wanted some Ribs from Applebee's.

The PICU doc said that she would testify to anyone who questions as to what happened and that it was a false alarm. That his heart is just fine. It was just scary to everyone until they realized what happened. They are now thinking that drug interactions are causing the seizures and are taking him off of one and looking at all his other meds. They plan an EEG tomorrow sometime.

CO2 after seizure was 136 with a ph of 7.25. They are going to check his gas again at midnight.
Tina

Tuesday, September 18, 2007 3:02 PM CDT

last co2 114, ph normal. Thanks for the prayers

Tuesday, September 18, 2007 6:04 AM CDT

The night was uneventful (thank goodness). Morning gases are: CO2 = 123 and ph = 7.30.

Monday, September 17, 2007 4:38 PM CDT

The PICU doc was just here and said preliminary results of the MRI did show some abnormalities in mid brain area. Sometimes chemo and BMT kids show some abnormalities so it could be something old, or it could be something new. All she could say for sure was that there WAS something abnormal about the MRI, but if it is something to be concerned about or not she didn't know. Neurology and radiology are looking at it now and discussing it.
Once they come to a conclusion then they will discuss it with pulmonary.

I did ask her if the increased pressure in the spinal fluid could have caused the seizures and she said no. The pressure was not high enough for it to cause seizures. Although it was higher than they like it to be, for it to cause seizures then it would have to be much higher than 30.

UPDATE => The OR trip went great. Job did just fine with the anestheia. They removed his port (I didn't know they were going to do that) and placed his new Broviac line where his port was located. It is a much bigger line and so hopefully we will not have trouble with it like we did the other one. They did not place a new chest tube. The x-ray was fine and maybe the pneumothorax is gone for good.

The bronchoscope or BAL went fine and they got only a small amount of cloudy stuff, not a lot, which means his lungs are not just full yuck.

The Neurologist said that they did not find anything that would cause seizures. However they did find two, symetrical abnormalities in the mid brain or brain stem. They are rare and no one is sure what they mean or what caused them. They do know that they are recent, within the past few days. They are going to discuss the abnormalities in their neurology conference on Thurs morning to see if anyone has any ideas on what they are.

UPDATE 7:15 => Doc just stepped in and said that she had talked to pulmonary. The findings will not affect his listing for transplant at all. We still just have no idea what caused the seizures.

Monday, September 17, 2007 2:52 PM CDT

Everything went great with the MRI. They found an MRI safe vent and so they didn't have to bag him during the procedure like they originally thought. However when they were moving him back onto his bed then they didn't have a hold on all of his cords and his chest tube was yanked out. Job was so sedated that he didn't hurt much, but now he doesn't have a chest tube. They took an x-ray and may replace the chest tube while we are in the OR this afternoon doing the broviac and bronch.

We haven't got any results on the MRI yet, but the x-ray looked fine (regarding the loss of the chest tube). THey will do another x-ray prior to us going to the OR to check if another chest tube is necessary.

His blood gas results at 1:30 were: CO2 = 100 and ph = 7.41.

Tina

Monday, September 17, 2007 8:28 AM CDT

The morning gas levels are: CO2 = 97 amd ph = 7.42 Can you believe it!!! God is so good to us.

Today the MRI is scheduled for 11:00 and I guess the Broviac is being placed soon after that. The bronch will be sometime after the Broviac is placed. The doc will make the decision on the table as to whether or not to go forward with the Bronch. Depends on how Job is doing.

Please pray for Job's safty during all of this today. Pray that God places His mighty angels around Job to protect him for everything that the enemy might throw at him.

Tina

Sunday, September 16, 2007 5:18 PM CDT

<<<<< NEW PHOTOS ADDED >>>>

Job has had a good day of rest. It has been calm and uneventful. He has been very peaceful and not pulling his leads out and coming out of his skin. He did convince the nurse to take out his NG tube, but at least he thought about it and didn't just yank it out himself. He asked first.

I believe the dilantin (anti-seizure medicine) makes him sleepy, and I think he has been doing some talking in his sleep. He told me once that he wanted to go to church so he could eat. I asked if we were having a pot luck at church and he nodded. HA

He also asked if I would pray for him to die. I said why? He said, pray that I die so the Lord can bring me back again. I said so the Lord can bring you back healthy and he nodded. He then prayed for a little while himself. I couldn't understand all that he was saying, but I could tell that he said Jesus' name a few times. He then asked me to help him pray so I did. We did not pray for death though, but for life and restored health.

His noon CO2 was 125 and ph was 7.34. The doctors are encouraged that all of his problems seem to still be isolated in his lungs and said they were going to expand that area in which they normally accept lungs for him. I thought they already accepted lungs from all over the US, but I guess I was mistaken.

They took his Broviac out this morning and will place another one tomorrow. While he is on the table for that, then they will do a bronchoscope without saline. Hopefully they will be able to get a sample to identify the type of fungus in his lungs. Using the saline, like they usually do is too high risk for Job.

Someone asked Dr. Sweet if he would accept a lung offer for Job right now, and he said he wasn't sure. They would have to discuss it, but it is not just a definite no. They still want to do the MRI on Monday, if they can get a team together that can handle it. They need to make sure that Job doesn't have any brain damage.

So there you have it. Even though we are still on the "list" the docs could decline lung offers for Job just because they want to. Again I am reminded that how wonderful it is to be able to depend on God and not just on doctors, medicine, and lists.

Tina

Sunday, September 16, 2007 9:11 AM CDT

CO2 IS 105!!!!! ph is 7.43!!

Job is even moving air through his lungs and the doctors have said for months and months that he wasn't moving any air!

I am on my way back up to the hospital to spend every minute with Job before I have to go back to Michigan and I thank GOD that I get to see some of Job's Miracle before I have to leave.

I was singing a song this morning, "Our Job is an awesome Job, his strength's from Heaven above. He is just full of love, our Job is an awesome Job." Gotta go see that miracle now!!

Tammy

Saturday, September 15, 2007 11:18 PM CDT

Okay, I know that I just posted an update not too long ago, but I expect everyone is wondering about the lumbar puncture or spinal tap. Everything went fine. They gave him a double dose of morphine and a dose of ativan. He never felt anything. The most he done was scratch his nose.

The initial results were increased pressure in his spinal fluid. Doc said she believed for a boy his size, pressure should be 15 and his was 30. That indicates that he probably has an infection in his spinal fluid (i.e. fungal meningitis, that is what they are suspecting anyway). The preliminary results will be in a few hours and final results in a few days.

Tina

UPDATE 12:06 => Preliminary results in: Only thing that was flagged was neutrophils were flagged as high. Everything else was normal. I've asked to speak to catherine the doc that performed tap to understand more.

Just talked to doc and prelims are normal. Nothing to be concerned about, everything looks good. No fungus or bacteria to be seen. Will have to wait to see how cultures grow.

UPDATE 12:30 => The doc explained that even though it was flagged it was nothing to be concerned about. When looked at under slide, single fields showed relatively no (certain type of cells) but when you look at all fields as a whole there were sufficient number of (certain type of cells). She communicated to me very plainly, no fungus was the best thing she said in my opinion. No indication of infection although cultures need to develop to completely rule out infection.

Saturday, September 15, 2007 7:32 PM CDT

This morning, the radiologist wanted an IV line to use for the contrast during the chest and abdominal CT. They tried to get one in and was not successful so the nurse asked if we could just us his broviac line (aka central line). They said they could make the necessary adjustments to be able to use that line. While we were down in CT and the radiologist was pushing the contrast into his broviac line, the line burst and even a spray of blood hit the CT machine. It was very little blood, but it was clear that the broviac line what shot. They finished the CT without the contrast although he had drank it for the abdominal portion of the test.

When we got back to our room, they had to put in an IV since his central line was broken. After his time this morning, I asked if they could pre-med him with morphine before they started poking him. They agreed and gave him morphine at 2:00. At 2:30 the neurologist came in and gave Job an assesment. Testing how well he follows simple commands (ie Look this way, touch my had, raise you leg, etc.) Keep in mind that he just had morphine thirty minutes ago. He was totally whacked and I am sure failed the test big time.

They got the IV in his right wrist and started pumping Vanc into the line. About an hour later, the nurse noticed Job's right hand and arm were twice the size of his left. His blood vein had burst and the fluid was going into the tissue in his arm. So here they now have to set yet another IV. He now has an IV in his left wrist.

The doc came in and said the CT didn't show any signs of fungus in his abdomin, but that is exactly what looks like is in his lungs. They wanted to start a stonger antifunal med called asperfungan. He has been on it before. They also want to do a spinal tap to check for an infection on his brain that could have caused the seizures. They will be doing the spinal tap any time now.

If the spinal tap is positive for fungus, then we are off the transplant list. If it is negative, then they will want to do an MRI. The MRI is high risk for Job because it takes an hour and since the vent is metal, he will have to be bagged the entire time. It is dangerous. I asked the doc what would happen if we refused to do the MRI. She said from a PICU standpoint, they would just say they are unable to identify what caused the seizures. However she is not sure how that would affect pulmonary and our "list" status.

Job is resting now. He has had a rough week. It seems like we are at the end of options, but God is still in control and he doesn't require us to be on their list to heal Job. GOD IS OUR HEALER. List or no list. I have finally came to the conclusion that my hope is not in being on this transplant list for God to heal Job. The fact is that we need a miracle and we'll take it however God wants to give it to us.

God Bless,
Tina

Saturday, September 15, 2007 8:36 AM CDT

Please do not start mourning for Job. He is still very much alive and fighting. Press closer to God than you have ever before. Keep your eyes on God and not on all of the circumstances and activities in the natural. Do not let it get you discouraged. God is going to heal Job, keep your eyes on that. Keep praising God for the miracle that he is about to do.


Job is responding now, it began around 7:30. His last gas was CO2 = 128 and ph = 7.36.

Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Is 58:8

But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall. Mal 4:2

Friday, September 14, 2007 10:38 PM CDT

We just keep getting hammered today. I just feel beat up.

Job had a seizure at 8:22 tonight. It lasted for two minutes. It took him a little over an hour to regain his same level of alertness. They took labs immediately after his seizure and all of them came back good. The doc said it was a good sign that he was alert so quickly.

Praise the Lord that He is sending us plenty of folks to stand with us during this time

Tina

Update: September 15, 1:15am
He had another seizure at 11:10 that also lasted for two minutes. They have him very sedated now and we went directly to CT to get a brain scan. The CT was clear so they are having neurology look at him tomorrow and do an EEG to see if they can find out why he's having seizures. The seizures themselves are not causing damage since he is on a trach and one of the major problems with seizures comes from people not being able to breathe and then having brain damage. This is not a problem for Job so even though they're terrifying, they aren't dangerous by themselves. He's still not alert after two hours, but again, he's sedated with the atavan and dilantin now. Mom and I are both here tonight because we need a two man team to watch him since danger could come if he thrashes his trach loose. We're hyper from the adrenaline rush (not the good kind) of the seizure, eating too much sugar and all the general stress to get sleepy anytime soon which is a good thing because we have to watch out for our boy.

Just as I was ready to post this, he coughed and scratched his nose. Still out, but that's the first step.

Tammy

Friday, September 14, 2007 3:39 PM CDT

The doctors just pulled me into another room and gave me the DNR speach. They said nothing had changed with Job in the last two days that cause them more concern that before, except that we were going into a weekend and their team had thought it needed discussed. They said that if Job went into cardiac arrest, and they were able to resusitate him, then he would automatically be disqualified for lung transplant. They wanted me to sign it. Anyway, I just stood there and listened to them, smiled and said thank you, and walked away.

The only way I'm signing that paper is if God Himself tells me to, and He's not going to do that because He is too busy HEALING JOB.

The pulmonary doctor did say that they will probably do a CT in the morning trying to identify what type of infection he has in his lungs and also what is going on in his tummy.

Tina

UPDATE 7:20 p.m. => His last CO2 was 165 and ph was 7.26. I also found out that one of the things they suspect is going on in his tummy is a fungal infection. If that is what it turns out to be, they informed us, it would also take him off the transplant list. But you know what, God doesn't have to have Job on their list to heal him.

Friday, September 14, 2007 7:23 AM CDT

I say, as long as he is fiesty enough to keep pulling at that NG tube and his leads, then he is doing just fine. They of course needed to put NG tube back in during the night because his little tummy is so swollen and distended.

It was hard for me to go to sleep last night. I keep going over and over in my mind all the mistakes that the doctors had made. I rehersed my speach to them very passionately explaining my thoughts regarding why they refused to do regular blood gases until Job was in a comatose state. Now they do gases every eight hours. The explaination before was he didn't have enought blood, the risk of infection was too high, he is about the same (even though I was telling them that he was not). I would like to thump a few of them in the head and tell them that I had been trying to get them to run blood gases for DAYS prior to getting to this point. I just layed in bed, running all this over and over in my mind.

Then I again realized that through all of this, as with his size error and other mistakes, God is still in control. God knew what Job gases were all along and could have burned in on the docs hearts to run the appropriate tests. He didn't do that, because He has His own plan. He is Lord God almighty. The maker of Heaven and Earth. He is a God of miracles that no one has ever heard of before. John 9:32 Nobody has ever heard of opening the eyes of a man born blind. He is so mighty and powerful that the world cannot list all the miracles that He has done. John 21:25 Jesus did many other things as well. If every one of them were written down, I suppose that even the whole world would not have room for the books that would be written.

Job is doing about the same. He hardly moves on his own and can communicate very slightly. The only thing he does move are his hands and his head occasionally. He has not moved any other part of his body in days (except for wiggling his toes when the nurse requests).

The doctors expected that he would already be in a complete coma, BUT HE IS NOT. He is fighting and fighting. He still says things that break our hearts. Yesterday he said that he wanted to give all his video games to Kyle. He also wanted to make sure Kyle got his baseball. Once he mentioned a boy in his class named Mason. He said he missed him.

God is not done with this boy, don't think it for a second. God is our Healer.

Tina

UPDATE 10:00 a.m. => CO2 was 142 and ph increased to 7.3 (remember normal is 7.35 to 7.45). He has fluid on his lungs. They are decreasing his fluids and IV meds to help his body get rid of the excess fluid. He did have a BM this morning also, but his tummy is still tight as a drum. The doctor said that although Job is still standing on the edge of the cliff, HE IS STILL ON THE CLIFF!

Thursday, September 13, 2007 2:38 PM CDT

Job is fighting very hard today. He is communicating with us and continually trying to pull the NG tube out of his nose. He is resting now.

For those of you following the numbers, here are the latest:

ph: 7.26 (up from 7.23)
CO2: 148

I may not have ever said with all that is going on, but the CT yesterday was clear. So there isn't an infection on his brain. All of his troubles are in his lungs.

He finally pulled the NG out as I was typing this. Gotta go!

Tina

UPDATE 3:02 => So I told the nurse to leave the stinking NG tube out of his nose unless they could prove that it absolutely necessary and was actually doing some good! It drives Job crazy!!!!

Thursday, September 13, 2007 0:55 AM CDT

Well, there's been a lot going on. Job has had some bad moments when he said he was tired of feeling this way and can't take it anymore but he's had some great moments too. He gave me a HUG when I said I was going to go spend some time with Nicole and he was telling me bye (so cool!!!). He smiled for Flo and gave Amy a kiss. He's done his victory dance for the nurses, Flo and Grandma. He was looking for Jeremy so he could give him a secret handshake and he said that he was glad that today was the day. Of course "day" doesn't mean a 24 hour day to him so I'm not sure where that was going. He was talking about Pokemon and other happy things. He's had a lot more lucid moments lately but he's still having to get morphine. They've now added benadryl every 6 hours and they're still doing a lot of tests. We're just trying to focus on the positives tonight and we'll deal more with the drama tomorrow.

Tammy

Wednesday, September 12, 2007 2:26 PM CDT

We just left the conference. They explained that Job was very sick and that the pneumonia had got signicantly worse between the x-ray at midnight and the one taken at noon and that was while taking antibiotics. They believe we only have 48 to 72 hours to get ahead of this pneumonia before it takes Job's life. They said one option would be to place him in a medically induced coma so the vent settings could be increased. That would bring down the CO2 and help him recover. However, by doing that the risks of never coming out of it were high. Also, the chances of a successful transplant would greatly deteriate By not increasing the vent, then he would probably go into a coma on his own because of the high CO2 levels.

So there we were to make the decision. Do we induce a coma or just watch one happen naturally.

We all felt, without a shadow of doubt, that we did not need to place him in a medical coma. God is still in control. GOD IS STILL OUR HEALER. We are keeping our eyes on God, not on these awful circumstances.

Tina

UPDATE: Sep 12, 6:12PM
They have just given him a bolus of verced to help his anxiety because he was saying "I'm dead, dead, dead" again. He finally said Jesus's name twice after that and then asked for a Dr. Pepper so he's been all over the map. He's resting now but the doctors have finally ordered an enema to relieve some of the swelling off his stomach and get some of the pressure off his lungs. They have the NG tube back down his nose to get some liquid and air off his stomach (swollen so much that it's shiny).
More later,
Aunt Tammy

Wednesday, September 12, 2007 11:58 AM CDT

They just got back from CT. Job is not himself. He was saying that he was at the fair. When we sent to suction him and unhooked the vent from his trach then blood came out. We called the doctor and told them. After they left, Job said, "last night, last night the rapture happened." I said what, he said again, "the rapture happened last night."

The nurse is drawing blood for labs right now.

Tina

UPDATE: September 12, 2007 1:25pm
Pulmonary and the PICU team are here and want to have a conference in another room with us so I've called Tina back from her five seconds of sleep. I'm going to go in with Tina and Rob while Mom stays here with Job. Just waiting for Tina to get here. The drs are all out in the hall, so I'll update you when we get out.

Tammy

Wednesday, September 12, 2007 9:19 AM CDT

The 6 o'clock blood gas did not show improvement. His CO2 was 143 and his ph had actually decreased more, down to 7.13. We both finally fell asleep from shear exhaustion and slept for an hour or two.

Pulmonary docs came in and said that they believe the spot in his right lower lobe that they have been watching has developed into a pneumonia and since Job has no lung reserve it has really caused havock on his body. They want to throw some of the big gun antibiotics at him. They explained that this is a very serious situation and they would do all they could to help Job fight. They believe the blood he received earlier this morning would really help also.

PICU docs think that it may be an infection on his brain, such an meningitous (sp?) or something. They wanted to do a spinal tap, but opted for a CT scan of his brain first. If the CT shows something then they will do a spinal tap.

Another blood gas will be done at 2:00 and the doc are discussing how to adjust Job's vent setting to help him breath better without damaging his lungs further, or with the least damage anyway.

Tina

Wednesday, September 12, 2007 1:45 AM CDT

Job is very sick tonight. His CO2 is 170 and his ph is 7.16. He is almost totally unresponsive. He will open his eyes, but that is about all. When he does talk then it doesn't make sense.

A few minutes ago, with a blank face he said, "I'm dead" I said, no Job, no your not and he said again, "I'm dead" again I said no Job and started praying. He then said, "I am dying".

Please pray for Job. It is like he is in a trance, he has his eyes open, but doesn't communicate with us (that makes any sense anyway).

His hemoglobin is low also, 6.7, so they are going to give him a blood transfusion.

Rob and Nicole are driving up tonight.

UPDATE 5:15 am => His CO2 is down to 148 and ph is up to 7.19. They plan to do another blood gas at 6. Job is starting to make sense and communicate again. Although he is still confused. He just now kept saying, "he tricked me, he tricked me, he tricked me" I said who tricked you, "he tricked me". I said Jesus loved you Job, can you say Jesus and he said, "Jesus tricked me, Jesus tricked me." I could not get anything else out of him, but I tried to assure him that Jesus didn't trick him. He wouldn't explain how they tricked him either.

Monday, September 10, 2007 11:45 PM CDT

Job has had another tough day. He kept desating all afternoon, meaning his oxygen level kept dropping for some reason. They done another x-ray of his chest and everything looked the same there. Then they done an x-ray of his stomach and saw a bunch of air. His tummy is so large that he no longer has a belly button. They are also trying to get his bowels moving again thinking that is another reason his tummy is so large. This all is causing pressure on his lungs and making it more difficult to breath.

Praise the Lord that he is resting peacefully right now finally. They placed an NG tube down his nose to help with the air on his stomach, and are doing some other things to get his plumbing working again. Hopefully he will get some relief soon.

Tina

UPDATE 5:00 a.m. Sept 11, 2007
Job finally had a good night.
after nine o'clock he never destated again.
Slept well. Breathing was smoother than during the drama
had a headache at 12:30 and was given Tylenol and again at 4:30.
He had two BM's.
Tummy still extended but not tight as a drum.
Heart Rate 144
Respitory Rate 26
Oxygen 100
Blood Pressure 131/72
Time 5:00 a.m.

Monday, September 10, 2007 2:26 PM CDT

First I want to say that Job had a very good visit with Trey Starks and Carly Gottsponer Saturday afternoon. I failed to take a photo of them, which I hate, but he enjoyed their visit along with their dads, Coach Starks and Coach Gottsponer. He is already, ready for them to come back again.

All the drama from Sat. night overshadowed that and I wasn't able to share that good news. Job is better today. He is calm. His last CO2 was 96 taken yesterday afternoon. He had a calm night, although he didn't get much sleep. Nothing dramatic was happening, he just wasn't able to rest for one reason or another.

He is still very sick, but we know that GOD IS OUR HEALER and he reminded me of that in church yesterday morning. We can't forget that. I believe will all of my heart that God is going to heal Job and the devil is just fighting mad that he is about to lose this battle.

Thank you so much for you continued prayers. Job has been able to get some rest this morning and is stable.

God Bless,
Tina

Sunday, September 9, 2007 10:39 PM CDT

Last night Job had a terrible time. He started throwing up at seven and didn’t stop until after midnight. Time after time. He got vomit all over his trach and collar and the ties. The hose from the vent to the trach kept popping off and I was so worried that he would get some of that in his trach. The Nurses gave him a bath and then he threw up again. They finally got him cleaned up and changed his trach collar and ties.
He kept saying he couldn’t breath. Then at one time he looked up at me and said, “I’m dying” I leaned right into him and said Job you are not dying I rebuke that in the name of Jesus. Then I started praying in tongues. Taking authority over satan buy the power of the Blood of Jesus Christ and in the name of Jesus.
This morning Job said, “God brought me through another storm didn’t He” and I said, “yes He did” Then Job said, “and God will keep me through the day won’t He” and again I said, “yes He will”. Then Job said, “Don’t ever doubt Jesus” and he smiled and went to sleep.
He had a rough day though even after that, needing suctioned way too often. Every time almost he would say he couldn’t breath. His little belly is bloated to the busting point. Nothing they medical staff has tried has helped. He still gets hungry but nothing is coming out.
Still tonight he is in very much discomfort. Please pray for this child.
Grandma

Sunday, September 9, 2007 1:46 PM CDT

PLEASE PRAY. Job is fighting for his life.

God is our HEALER!!! God is our HEALER!!!

Isaiah 53:5 But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.

Friday, September 7, 2007 11:43 PM CDT

Our pastor from Bigelow A/G, Wayne Pavatt, came up for a visit today. He spent all morning with Job, which Job really enjoyed.

The culture from Job's trach did come back positive for something afterall, so they are running a course of antibiotics to take care of it. They caught it in the early stages so it is not a big concern.

Job's CO2 was 117 today, which is still VERY high. The docs are not worrying too much about it because he is acting fine. He has been requesting to be suctioned a bunch, and has had a few moments that have been questionable, but for the most part he is doing really good.

I want to apologize about something else I said the other day when I was having my meltdown. I stated that we were in Hell on Earth. Although I felt that at the time, I was way out of line by saying that. We have HOPE. We have Christ. We have love, and family, friends and joy. NONE of that will be in Hell. Hell is a terrible place created for the Devil and his demons where there is total seperation from God. No hope, only dispair and torment. PRAISE GOD that we do not have to go there. No matter what happens, or how tough things get here. Jesus saves us from that terrible place. Hell is nothing to take lightly or joke about.

Please forgive my poor choice of words.

Tina

UPDATE (9/8 9:00 a.m.) Job's CO2 this morning was down to 91. Thanks to a couple of ole prayer hounds last night.


NOTICE - TJ passed away this morning (9/8/07). Please pray for his family

Thursday, September 6, 2007 11:43 AM CDT

GOOD NEWS! All of the tests have came back negative and his counts are within normal range. We are stopping all the antibiotics, fluids, and additional blood tests. We also decreased his respitory rate down to 28. Things are basically back to what they were pre-Tuesday.

Thanks for all your prayers. Job is back to himself and feeling as good as he ever has in this situation. Hopefully lungs will come soon or God will just heal this ole pair.

Tina

Wednesday, September 5, 2007 11:44 PM CDT

Please pray for TJ tonight. He is very sick. The doctors are only giving him a few days. His link is below.

Job has had a fine day and is sleeping well. They are still running all sorts of tests, and giving him antibiotics, but it is all precautionary now. He is fine.

God Bless,
Tina

Wednesday, September 5, 2007 8:27 AM CDT

Night before last Job and Mama had a rough night. Last night Job had a good night. The afternoon was still rocky but after they drew the air out of his chest cavity he felt a lot better. Praise the Lord they didn’t have to put another tube in his chest. His CO2 was very high. They changed his vent settings and it started coming down.

CO2 140 12:00 Noon
CO2 115 2:30 p.m.
CO2 95 5:10 p.m.

5:50 p.m. Job ate two hot dogs with bread and a Wye Mt. Sausage biscuit
plus a carton and a half (1/2 pint cartons) of milk with strawberry syrup in it.

6:20 p.m. He is sleeping

He sat up at 1:00 a.m. and ate another hot dog and drank some more strawberry milk.

The last xray showed the air pocket in his chest was gone. Mark (Job’s Nurse) put a tube down his nose into his tummy to relieve the air there. He has rested well so far. It is now 2:20 a.m.

He has woke up every once in awhile but not to be suctioned. He hasn't asked to be suctioned hardly at all. He has slept very well. He has been himself since they got that air off of his chest. Didn't get much air off of his tummy. But Mark promised him he would take the tube out of his nose at the end of his shift. So the tube in his nose is now gone.

6:00 a.m. Heart rate 128 RRate 27 Blood pressure 124/52
He ate two boxes of Trix and a carton of whole milk.
Now he is playing Wii. He played about 15 minutes and was tired

8:00 a.m. He has went back to sleep.

Thank you all for praying. I hope Mama got some sleep also.
Grandma

Tuesday, September 4, 2007 8:49 PM CDT

PRAISE GOD that He didn't answer my prayer this morning. If He'd took away Job's symptoms, then the doctors would not have continued to run tests until they found the problem. I must repent for getting so frustrated. Thank you all so much for your prayers. I just was at a loss for what to do to help Job. It is so miserable to see him so messed up and not know what is wrong nor what to do to help.

Thankfully they didn't have to put another chest tube in, they were able to get the old one working.

Today is another example of how we should praise God in all things.

Tina

Tuesday, September 4, 2007 1:59 PM CDT

Job is still very distressed. They gave him morphine around noon to help, and it has help calm him, but now the bigger question is what has caused all of this. He doesn't look well. They are running all sorts of tests to figure out what is going on.

His CO2 is 140 (2:00 p.m.).

UPDATE 2:49 -> x-ray showed that current chest tube isn't working properly and air has accummulated between the lung and the chest wall again. They are going to try and get the current tube working or place a new one. In the meantime, they have adjusted his vent settings to help him blow off the CO2.

UPDATE 3:10 => CO2 is down to 115. they were able to draw air off manually and he is already feeling better.

UPDATE 6:30 => at 5:10 co2 was 95 since then he has ate two Petit Jean Hot dogs with bread and a Why Mt. Sausage Biscuit. he is sleeping and resting well. His breathing has evened out. Thank you Jesus!! and thanks to every body for praying. Grandma

Tuesday, September 4, 2007 9:58 AM CDT

Sometimes I just don't understand God. I try and I try but I just miss it somehow. I have really been trying to watch every corner of my life. Trying to watch my conversation, my TV choices, read my Bible every day and pray. I have been praying more than I have in a long time. But then when a simple prayer isn't answered, it is so confusing.

Job had a rough night last night. It started off with just some insomnia, but around 4:30 turned into a full blown anxiety attack. He was like a crazed mad man. I prayed and pray. Job kept asking me to pray too, he said he felt better when I would pray, and worse when I stopped. I prayed every which a way I knew and nothing helped. All I asked was for God's peace, that doesn't seem like too much to ask for. I wasn't asking for the moon. Do I not even have enough faith to pray for the peace of God? The peace of God didn't come. We fought with Job until 8:00 and then gave him clonapine to knock him out.

He is resting finally but because of the drugs not my prayers. I couldn't even pray down the peace of God for Job how in the world could I pray for healed lungs. I hope you guys out there have more faith than me. Please pray for me to be a better pray-er and more in tuned with God so I can be of some help to my boy.

Dear Lord please help me and please deliver Job from this Hell on Earth.

Tina

Monday, September 3, 2007 6:26 PM CDT

I just took Nicole and Rob to the airport and then switched out with Grandma. Job was very sad to see them leave. His nurse gave him some clonapine to help him rest. He is sleeping now.

I hope everyone had a good weekend, everything went just fine here. It was great having Nicole and Rob with us for a few days.

God Bless,
Tina

Saturday, September 1, 2007 11:18 PM CDT

Job hasn't been feeling as well as he did right after his chest tube placement. He's been okay, but just not as active as he was for those few moments. It proves that his activity is more a result of his physical health than his emotional health. When he improves physical, then his activity level automatically improves.

Aunt Tammy drove up on Friday and spent Friday evening and Saturday morning with Job. Rob and Nicole arrived Saturday morning. Boy is it good to see all of them. We are going to try to get Rob and Nicole up here every three weeks if possible. I really had high hopes about this weekend, but no news so far regarding lung offers.

Anyway, I hope you all are having a wonderful Labor Day weekend.

Tina

Psalm 50:23: "Whoso offereth praise glorifieth me: and to him that ordereth his conversation aright will I show the Salvation of God"

Dear Lord we are so thankful for Job's stability. Thank you for holding him in Your mighty hand. You are God Almighty, the maker of lungs, the Great Physician. Praise be to you for being so gracious to us by making Job so strong. Please help us control our conversation so that we can see the Great Salvation of God (deliverance from afflictions). In Jesus name we pray, AMEN.

Thursday, August 30, 2007 5:47 PM CDT

Job is feeling really good today. He had a good PT session this morning, then he sat up with OT for an hour this afternoon. He even done a math worksheet with her. We had to change out his trach (every Thursday) which went well. Once the was settled down after the trach change he wanted a tuna sandwich. He sat on the edge of the bed to eat it and then wanted to continue sitting on the edge of the bed while he played Wii. He sat there for an hour again before wanting to lean back in his bed, but still wants to sit up and play Wii. So I turned his bed around where he is facing the TV better and just have his bed in a sitting position while he continue to play. YIPEE!

Yesterday after the chest tube was in, they were suppose to turn on low suction to keep the air out of his chest while his lung heal. They failed to do that after the procedure. After shift change, the evening nurse noticed it and called the surgeon. He came in and took a look. The nurse then turned on the suction, this cause Job a great deal of pain. That is what got Grandma so upset. All she knew was that Job was feeling great and they come in and fiddle with something and then he is crying in pain. She was fit to be tied. I didn't even know all this was going on until I came in today.

Thanks for all your continued prayers.
Tina

Wednesday, August 29, 2007 10:38 AM CDT

Pneumothorax is back and bigger than before. So big in fact that they are going to put a chest tube in this afternoon to draw the air out of this chest. They are also going to put an NG tube down his nose to draw the air off his tummy. His stomach is very distended and the x-ray shows a lot of air on his stomach.

Please pray for our little boy. He is so miserable today.

UPDATE 12:15 - The NG tube is in and is working. Job is sleeping (finally!). They plan to put the chest tube in aroung 1:00 and expect it to be in for a week. They are planning to take the NG tube out later today. It was simply to get the air off his stomach and then be removed. His arterial CO2 is 124, it was only 72 on the 27th which is where he usually hangs out. Normal is 35 to 45.

UPDATE 2:45 p.m.- Procedure is over and chest tube is in. Everything went great and pheumothorax is already resolved. They pulled a lot of air out. They have also took the NG tube out of his nose. He has already ate a roast beef sandwich and a chocolate milkshake. He feels SSSOOOOO much better. He is Job again rather than the demon child that he was last night. I am 100 percent convinced that the last time he had that terrible anxiety attack that lasted all night long was the beginning of the original pneumothorax. Thankfully God knew what was going on and help it improve on its own (at least improve out of the danger zone). Thank you for all your wonderful prayers. Job is doing great. They will check his CO2 again at 3:00, but I know that it is better.

Job just said that he needs to be more spoiled now because his side hurts HA.

UPDATE 5:12 p.m. His CO2 is 71. Job says he is so clear that it is like he isn't on the vent. He also said that he could breath so well that he could ride his bicycle (the one they have in his room to help strengthen his legs.)

Tina

UPDATE 6:12 p.m. He just told me, “you know that feeling I told you about awhile ago” I said, “about being able to breath” and he said, “yes, It won’t go away” I said, “you don’t want it to do you?” and he said, “No”, and smiled and closed his eyes and went back too sleep.
I am so glad that he can breath so much better after they got that air off of his lungs and also got rid of the air that was in his tummy pressing on his lungs.
I pray it last a long time.
Thank You Jesus!
Grandma

Monday, August 27, 2007 10:54 PM CDT

The pneumothorax (air on outside of lung) has officially resolved on its own. PRAISE the Lord!!! That was some great news to hear today.

We love our new apartment. It is so wonderful. Our entire family has lived in a bedroom for six months, now Grandma and I have an entire apartment to ourselves. We feel like we are living in a mansion. We have a kitchen and a living room. WOW, you just don't realize how great it is to have more than one room. I hope you all stop to appreciate your homes right now. Praise the Lord that your home is more than a bedroom and a bathroom.

Florence arrived tonight. Her and I just finished giving our 3'10" boy a bath. He even sit in his chair and soaked his feet while we cleaned up his bed. She is staying until Wednesday morning. Then Rob and Nicole will be here Sat. morning. YIPEE! They are staying until Monday evening.

I hope everyone is continuing to keep their trust in God and not in medicine and man. Praise God that He knows all and has Job in the palm of His hand.

Tina

Monday, August 27, 2007 7:56 AM CDT

You are not going to believe this when I tell you, but it's true. All I have to say is that I am glad that we are depending on God rather than doctors and staff. I would go crazy if all I had to hang on to was the intelligence and accuracy of mankind.

So here's the thing, they have had Job's height wrong all this time. WE HAVE BEEN WAITING ON THE WRONG SIZE LUNGS! Can you believe it. It is so crazy. I spoke to the transplant team this morning, and sure enough it is true. In Houston his height was recorded at 136 cm and here in St. Louis it was recorded at 143 cm. He is only 117 cm. That is nearly a foot difference. Since they the only bases for finding matching lungs is height and blood type it is a very big deal. They will accept lungs within a 20% height range. Before, they we were incorrectly waiting on lungs from someone who was between 114 - 172 cm. We should be looking for lungs that are from a person that is 94 - 140 cm.

Like I said, I am glad I am depending on God and not on hospitals. It was a fluke that it came to my attention. It was discovered when I was talking to a lady regarding Job's eating and she stated that he was tall for his age. I said oh no, he is head and shoulders shorter than his classmates. That got the ball rolling and they came in and measured him TWICE. He is 117 cm or 3'10" tall.

I look at it this way, God is getting everything in place to restore Job's health.

Praise be to God who never makes mistakes and has always known Job's blood type and size. He was never confused or mistaken.

Tina

Sunday, August 26, 2007 12:18 AM CDT

WE HAVE MOVED out of the Haven House. We are now staying in one of the Ronald McDonald Apartments for extended stays. Please send all mail to our new address...

4381 West Pine - Apt. A
St. Louis, MO 63108

Tina

Sunday, August 26, 2007 9:56 AM CDT

Well the last couple of days Job has been playing the Wii and has been getting better and better at it. It really makes me feel good to see him having fun. Also it gives him some arm exercise. He woke up this morning and ate some Trix and then played the Wii for about an hour.

They are going to give him some sedation medicine this morning because E.N.T. are going to look at the back of his throat and try to see whats going on because he keeps complaining about his throat needing suctioning (inside his mouth and above the Trach).

I haven't heard an update on the air in his lungs lately. We will let you know when we hear something. The Dr. this morning said that his lungs sound better than 3 weeks ago.

His Pawpaw Billy and Granny Betty Gilmore came to see him. They arrived yesterday and are leaving Monday. They haven’t been up here today yet but probably about noon.

That is about all of the news here, will give more when it becomes available.
Love to all and may God bless you,
Grandma

Friday, August 24, 2007 8:18 AM CDT

The air on the outside of Job's lung is increased today. He was in a lot of pain yesterday whenever he tried to sit up. He had to lay down all day even when he was eating because it hurt too bad to sit. He has not complained of pain this morning, but we haven't tried sitting on the edge of the bed either. He was able to sit up in bed so that is better at least than yesterday.

His grandpa and grandma Gilmore are coming up this weekend for a few days. He is excited about seeing them.

Tina

Thursday, August 23, 2007 4:32 PM CDT

The oral surgery on Friday is off the table. The pulmonary and transplant doctors slammed on the breaks to the whole thing. They said the risk of general anesthesia is too great for an "elective" surgery. They called it elective, because it is not absolutely necessary. Yes, he could develope an infection due to the cavity, but he could also develope an infection due to the open would left after extraction. But the bottom line was that the general anesthesia could leave his lungs a lot sicker than they are right now. We just don't want that at all.

Dear Lord, Please continue to give the doctors the wisdom they need to make the right decisions for Job. We are at your mercy. You know what each day holds and the benefits and risks of each procedure. I do not. I am at your mercy and at the mercy of the doctors. Please guide them and help them make the right decisions.

God Bless,
Tina

Wednesday, August 22, 2007 3:33 PM CDT

We just got back from the dentist. It was more serious than I originally thought. You see, a cavity is a serious risk of infection. An infection would take Job off the transplant list until it was cleared up. Therefore we must address the teeth issues before an infection occurs. The dentist was talking about extracting one took and filling another while we were down there today. My concern was he wasn't going to be able to receive gas in preparation for the local, which is a shot in the mouth in case you didn't know.

I was sitting there panicking inside all the while trying to keep the tone of my voise as if its a walk in the park. I looked at the doctor that was with us and asked his opinion and that is when he told me that if Job gets an infection he would be off the list. We were all sitting waiting for the x-ray results while this was being discussed. Thankfully, Job didn't realize what we were talking about and was very relaxed during the entire discussion. Once the x-rays were ready, the dentist decided that the best option would be to go to the OR and take care of everything all at 7:30 Friday morning. Please pray for him.

I talked to the nurse and this procedure will not take him off the list. If lungs become available, then that would over-ride the dental procedure and we would proceed with the lung transplant. An infection, that is want would take him off the list. Please pray that he heals quickly and that everything go smoothly Friday.

Tina

Wednesday, August 22, 2007 11:25 AM CDT

The x-ray didn't show that the collapsed area of his lung had grown any bigger. They done another x-ray last night and this morning. It did show that the air had shifted from the side to the top of his lung. They discussed whether a chest tube was necessary right now and decided that it was not.

The Cardinal came and went faster than you could blink. Gary Bennett was the one who visited Job. Becky said that there were three here and each took a floor of the hospital to visit. He signed a baseball for Job and a Cardinal's bear that he'd brought with him. We did get a wonderful photo of him. I'll post it in a minute. After he left, I seen that Job was a little disappointed that he didn't get an autograph for Trey and Kyle who'd asked for one. I asked him if he wanted me to try to get him to sign two more balls and he said yes. I grabbed two baseballs and ran out the door. I was able to catch him down the hall and he was happy to sign them for Job.

It was great for him to come and visit Job. I understand that he couldn't stay long because he has a bunch of kids to visit today. Job was very happy that he got to meet a Cardinal.

Job is going to the dentist today. It is going to be a task, but we are trying to get everything coordinated so that we are able to get down there, have a check up, and then get back to him room without being gone too long. It shouldn't be more than we do on a trip to the garden.

Also, we found out the an Ronald McDonald Apartment is available. It has two bedrooms, a kitchen, and a living room and of course a bathroom HA. It is only a short distance from the hospital, walking distance. Hopefully everything will work out and we will be able to move into this apartment. I should know if a couple of days.

Thanks for all your prayers.
Tina

Tuesday, August 21, 2007 2:12 PM CDT

Job had his hot dog stand today. He will be on the 5:00 Fox News today. If you are not in the St. Louis area, then you should be able to watch the clip on their website, which is www.myfoxstl.com. I do not know how soon they will how soon they will have it on their website, but I expect right away. It will probably only be there for 24 hours or so before going to the archive files. Again I am not sure. Becky from Child Life said she will get us a copy of the footage.

Check out the new photos I will post in a few minutes.

Here's a link specific for Job's story. Hopefully it will work longer than 24 hours, just copy and paste it in your address bar: http://www.myfoxstl.com/myfox/pages/Home/Detail?contentId=4134188&version=2&locale=EN-US&layoutCode=VSTY&pageId=1.1.1

UPDATE: The doctor just came in and said that Job's x-ray this morning showed that he has a small amount of air on the outside of his lungs with a small portion of his lung colapsed. They are going to recheck his x-ray to identify if the area is growing. The doctor thinks that if it were growing then he would symptomatic. If it is increasing, they will draw out the trapped air similar to if he had had surgery or something.

Tina

Saturday, August 18, 2007 9:43 PM CDT

I was at the Haven House this afternoon and received the following text message from Grandma at the hospital...

"Job is very sad. Says he can't breathe without Nicole."

Tina

Sunday, August 19, 2007 11:15 AM CDT
Last night Job had the granddaddy of all anxiety attacks. He was acting like some one had put a pillow over his face and he couldn’t breathe. Yet he wasn’t asking for breaths. He acted like he wanted to come out of his skin. He pulled all of his leads off and grabbed his breathing tubes just as I grabbed him. They sent for Mark and he came running and talked to Job and got him calmed down while they were getting the Adivan. He had been crying and upset every since Nicole and Dad left at about 8:00 p.m. At 9:00 p.m. I asked for him some Benadryl, it helped enough that he was in and out of sleep until about 1:30 a.m. when the anxiety attack started. He couldn’t have anymore Benadryl until 3:00 a.m. They decided to give him some Adivan. It calmed him down and he slept until 4:15 a.m. about. He wanted a Petit Jean Hot dog and then asked what time it was by then it was 4:30 and he asked for some Benadryl at which time they gave him some. He has been resting well since then. During all of this he had to be suctioned a couple of times, the last time (after the Benadryl at 4:30) the Nurse “Kim” that suctioned him was laying him back down and had her arm under his head. He didn’t want her to move her arm so she stood there for awhile and he asked her if she wanted a chair so I got her a chair and there she sat with her arm under his little head and her head laying on the bed beside him. I wish I had gotten a picture. He has rested good since then. This morning about 6: or 6:30 he wanted some rainbow sherbet. Mama had gotten him some and had them put it in the freezer here in PICU. He ate a good cup full. They brought his breakfast tray on it was Trix cereal, milk, Sausage Biscuit, (NOT!!! Wye Moutain Sausage Biscuit). Banana, Apple juice, French Toast sticks and syrup. He only wanted a Petit Jean (Cedars Falls) hot dog with a slice of bread. He is calm now and laying quitely.
He is so sweet, It sure hurts when he is hurting or uncomfortable in any way. He sure misses his Dad and Nicole but Mama already has tickets for them to visit Labor day weekend. Mama will be here this afternoon, she went to Sunday School this morning.
Love to all, may God bless each and everyone,
Grandma

Saturday, August 18, 2007 9:36 AM CDT

I dropped Rob and Nicole off at the airport an hour ago. I just spoke to them are the phone and they are still waiting to board the plane. Their plane leaves at 10:15 and arrives in Little Rock at 11:15. It is so sad to see them go. Last night watching them tell Job bye was heartbreaking. We were all in tears. Job and Nicole hugged for a long, long time. He gave her one of his stuffed dinasours before she left. Job then just cried and cried.

I am thankful that they are going home to many friends who will love them and take care of them while they are away from us.

Tina

Thursday, August 16, 2007 3:26 PM CDT

Hey all. Tammy says that she has my missed episode of Hell's kitchen and she will be sending it to me soon. I felt really silly after posting that stupid request on Job's website. There are so much more important things going on that some silly show. Thanks to Debbie for giving me the website info, I will check that out.

Kimmie, you will do a great job at children's church. It doesn't have anything to do with me, just Jesus. Just trust in Him and not yourself and you will do a great job. I am glad that you are taking it over.

Job had a difficult time with PT yesterday. He stood in this contraption for three minutes. He was begging them to let him get back in bed and not have to complete the 3rd minute, but they pushed on. They weren't being mean, just trying to push him just enough to strengthen his legs. He was crying and crying, complaining that his back and chest hurt. Even after getting back into bed, he was in miserable pain until ultimately they gave him a small dose of morphine. At various times during the night he had anxiety attacks about the standing contraption. He was worried and worried that they would make him do it again today. Of course we didn't. He only had to do his bed exercises today. We have talked to him and will do other things for a while until he is ready to try that machine again.

Dear Lord, Please help us get through this day. Help us have the strength to endure all that we must and do it with your peace and joy in our hearts. Please set Job free from his hospital prison. Please Lord, have mercy on my family. Please protect Nicole and Rob during their travel home. Thank you for sending so many people to love us during this difficult time. In Jesus, Amen.

Tina

Tuesday, August 14, 2007 7:58 PM CDT

Okay, I have a ridiculous request. I know it already, but I'm putting it out there just the same. I have watched the entire stinking season of “Hell’s Kitchen” and I missed the season finale last night. Does anyone still have it on their DVR and could possibly throw it on a VHS or DVD and send it to the Haven House address above. Yes, I understand it is a complete waste of time show and foolish reality TV, but I’ve invested so much time into watching the entire season, every show. The only show that I have watched routinely this summer (except for Judge Judy, but that is just research in case someone tries to sue me in the future.) HA.

I didn’t tell you all that we had visitors this weekend. Sarah and Dean Hargrove, Pat Howell, and Coty Drinkwater. Coty is a good friend of Job’s. Job really enjoyed all the company. We all did. It was very uplifting, especially since we are facing a tough weekend coming up with Nicole and Rob going home.
Job loves to have other kids in here with him. He doesn’t do much, but he loves to have them around. Coty and Nicole had Job laughing several times.

Since it has been so hot, he hasn’t been going to the garden. Its been over a week now, maybe almost two since he has got to get out of the room. So they took him to the gift shop. He loved it. His eyes were bright with delight at seeing the wall full of candy and snacks. He looked it up and down for a long time before settling on some cheesy popcorn. He then went to the toy section and found a deck of Cardinal Uno cards that he had to have. We strolled all around the little shop and he really loved it. He can’t wait to go back.

He stood, with assistance, for two minutes today. I also found out that they are getting him set up with music therapy. I think he will like that. We are also trying to get him set up for school also. His teacher at AWE is Mrs. Strickland. Is wondering who else is in his class back home. I will be linking up his teacher at AWE with the teacher here so he can keep up with his class. He misses his friends very much and really wishes that some more of his classmates could come and visit him.

Tina

Tuesday, August 14, 2007 9:32 AM CDT

I'm back at the hospital today. I haven't been here since Sat. night. Grandma stayed on Sunday and then Rob stayed Sunday night and Monday night. That was his last time to stay the night with Job. Nicole is going to stay tonight and tomorrow night so that she can spend as much time as she can with him. Grandma and I are talking about taking 48 hour shifts rather than the current 24 hour schedule. It will cut down on our gas expense since the Haven House is about 15 miles away from the hospital.

There is a baby who is getting a lung transplant today. The pulmonary doctors pulled Rob out in the hall and told him so that he wouldn't hear the buzz and think it was for Job. Praise the Lord for that baby though.

Thanks for all the continued prayers. Hopefully we will have this transplant soon.

God Bless,
Tina

Saturday, August 11, 2007 11:24 AM CDT

Hope everyone is having a good Saturday morning. Job has been enjoying playing his Pokemon Diamond game over the past few days. He has had hardly any anxiety spells since he began playing. Nicole has been playing with him. They got together last night and convinced me that Nicole needed to stay the night. I wasn’t going for it at first. There is no place for her to sleep and it is against the hospital rules also. Job started crying and saying that he just wanted to spend as much time with her as possible before she had to go back to school. How could I say no to that. So Nicole got her turn at sleeping in a chair like the rest of us. Although Nicole usually doesn’t wake up until nine or ten o’clock, Job was ready for her to wake up at 6:30 this morning.

I can’t believe that it is already time for Nicole to go back to school. Rob and her are scheduled to fly home on Saturday, the 18th. Schools starts on the 20th. I wanted to keep them here with me as long as possible.

We did decide to just drop Rob from my insurance policy. It was just too expensive to keep him. We did decide to keep our dental insurance however, so the kids could still go to the dentist. Nicole needs a cleaning and checkup and Job needs work done as soon as he is able. Thanks for all your prayers regarding this matter. I feel that this is the right decision to make. I must just depend on God to provide the finances needed to pay the premiums. Afterall, He knew all along what it was going to cost.

I have been tying to spend more time with God. I have been reading my Bible more and listening to worship music every chance I get. I can tell that it sure helps. Thanks to God and to all your prayers, I do have renewed strength.

God Bless,
Tina

Wednesday, August 8, 2007 7:27 PM CDT

There is a little boy and family that desperally need prayers. His name is TJ Herbert and his website is www.caringbridge.org/la/tj. He has had two bone marrow transplants and has relapsed again. The doctors have lost hope...please pray for this little boy and his family right now.


Job had a better day today. He was upset earlier in the day, but there were some smiles this afternoon. He also played Pokemon Diamond for about two and half hours!!! That is the first time he has played a video game for more than five minutes since this all began. I was really glad. He is sound asleep right now. Needless to say, he has not gone to the garden for a few days. It is just too hot.

God Bless,
Tina

Monday, August 6, 2007 7:08 AM CDT

Hello Everybody,
This is Grandma, I got back Saturday evening. I had a good time at my daughter Tammy's. I got to see her and one of my grandsons (Tony). Her other son (Justin) is in Arkansas. He (Justin) is planning on spending the rest of this year with her though. We tooled around Chicago after she picked us (Nicole and me) up from the airport. Not only are the buildings huge, they are beautiful with so many of them having all kinds of art work. We went to the Museum of Science and Industry while we were in Chicago. They had a CSI experience there where you tried to solve this crime. They had a crime scene where you had to find the clues. It was fun. I also got to go to Paw Paw, Mi where my son was born. After 44 years nothing looks the same. I also got to see my little dog, which I haven't seen in over five months. He did remember me though.
Well enough about me. After I got back Saturday evening I spent the night with Job. I then told Tina that I had a change of clothes up here so I wanted to spend Sunday night also. Job kept getting anxious, nervous, and panicky and asking for his Mother, Several different times Sunday. He wanted me to text his Mama and see if she could just come to the hospital for a few moments. I told him that she was visiting with Aunt Tammy, and that she would be here Monday about noon. While I was talking to him he was crying and said, "I think I would go nuts if it wasn't for my mama". I said, "Job are you afraid that Mama will go back to Arkansas and no one will know how to change your trach." He said, "yes, but that's not the only reason." There are only two people that Job trust to change his trach. His Mama and Mark the awesome Nurse. I assured him that his Mama was going to stay with him and that everything was going to be fine. I had called Tina and told her what was going on and she said there was no way that she could leave him in such a fragile state.
PLEASE pray for Tina's job and insurance etc. etc. etc. and pray that Rob will get a good job when he returns home with Nicole. Rob needs a job that has good insurance and of course pays well. Nicole also needs your prayers.
Of course continue to pray for little Job. He is so tired. He doesn't understand why it is taking so long. He says he can hardly remember being able to breathe well or even being able to walk. The song (he's my son) on his testimony fits so well now also:

Artist & Album: Mark Schultz
Title: He's My Son
I'm down on my knees again tonight,
I'm hoping' this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries, Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old, Live life without this fear.
What would I be, Living without him here?
He's so tired, And he's scared
Let him know that You're there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Can You hear me?
Can You see him?
Please don't leave him,
He's my son.

Such a fitting song for times like this
May God richly bless all of you,
Grandma

Saturday, August 4, 2007 3:18 PM CDT

Heaven will be my home

1)
A STORM WITHIN ME RAGES, IT WARS, AGAINST MY SOUL
BUT MY FAITH IS ANCHORED IN YOU LORD, SO THINGS ARE IN CONTROL
SO MANY TIMES I'VE FAILED YOU, BUT STILL YOU HELD MY HAND
AND I'M GLAD THAT I, CAN TALK TO YOU, FOR YOU ALWAYS UNDERSTAND

CHORUS:
YOU'VE NEVER ONCE QUIT LOVING ME, THOUGH TRAILS, HAD MADE ME COLD

YOUR FAITHFULNESS, HAS BEEN SO SWEET, AND YOUR MERCIES TOUCHED MY SOUL

OH FATHER I REACH OUT TO YOU, PLEASE HELP ME REACH THE GOAL

AND I'M GLAD TO KNOW BECAUSE OF YOU, HEAVEN WILL BE MY HOME

SHORT T/A

2)
I NEED YOUR STRENGTH OH GOD EACH DAY FOR I, AM WEARY AND FRAIL
CAUSE THE WINDS AND TRIALS THAT HAVE COME MY WAY
I HAVEN'T HANDLED TO WELL
MY SOUL CRIES OUT FOR ME TO STAND, UPON YOUR FAITHFUL WORD
OH GOD, YOU KNOW, I STILL BELIEVE, PLEASE BRING ME THROUGH THIS STORM

REPEAT CHORUS

TAG
YES I'M GLAD TO KNOW BECAUSE OF YOU HEAVEN WILL BE MY HOME


sung by Walt Mills

Saturday, August 4, 2007 9:24 AM CDT

I've done nothing but cry for the past two days. Job is fine, so don't think something has happened to him. I am just a basket case.

It all started yesterday while I was going through my mail. I received a letter from Windstream Communications about my insurance premiums. Although I have talked to various people over the issue of insurance and felt like I had everything taken care of, it seems that I was misled. You see, I was told that as long as I was an "employee" and just on a leave-of-absence that my insurance premiums would be the same as while I was active. COBRA would not kick in unless my employment was terminated. My FMLA leave ended on June 8th. I received a letter stating that I needed to call Christine Hubbell back in May regarding my insurance premiums after the FMLA leave ends. I did that and even wrote it in my journal and I quote, "May 11th...Called Christine Hubbell about insurance premiums and she said to just continue paying same premiums. She said I could be on unpaid leave for one year." Yesterday I received a letter from this same Christine Hubbell stating that I had underpaid my insurance by more that $700 PER MONTH since July 1st. I now owe for July and August and Sept is right around the corner. She said that when FMLA ended that I was required to pay the entire amount of my insurance premiums including the company’s potion. Come to find out, although it is not COBRA, the costs are relatively the same as COBRA. Funny that no one told me or sent me an updated bill so I could prepare for these costs.

I had even researched this way back in 2006 when we were first sent to Houston for an evaluation. I was told the same thing back then about COBRA and that my insurance premiums would remain the same. I called Christine and told her that she was the one who actually told me incorrectly back in May. She gave me an apology in such a way as to indicate that it was my fault for not making myself clear when I called her. I tried to explain that what else would I be talking about in May. I had already been on FMLA leave since March and it was about to end. I was calling her as directed in the letter I received regarding continuing my leave beyond FMLA.

We are talking about corporate America here. I am just a number and it doesn’t matter that I was misled, the fact still remains that I owe the money or they will cancel my insurance. I have no recourse. However, I do have some options. I can drop my dental and vision and save $100 per month. I can drop Rob and save another $300 per month. That gets me down to owing around $500 per month to continue my insurance. That will keep Nicole, Job, and myself covered under medical insurance. It’s a shame I can’t drop myself as well, but they do not have a Children Only option.

Because of this insurance mess, I may be the one returning home with Nicole so I can go back to work. Rob and I are still trying to figure out what we are going to do.

This has just thrown me in a tizzy of depression. This whole situation is so frustrating. We are all so tired and just wish either God would heal Job’s lungs or let him have his transplant. It is so difficult to see your child suffer so much and be so helpless. I could never explain how difficult this situation is on all of us.

Sorry to rant and rave so. It is just a difficult time for me.

Tina

Thursday, August 2, 2007 3:27 PM CDT

I just realized that it is August!! It's crazy how days and months all just seem to run together in the hospital.

Job got very upset during his visit to the garden yesterday. Everything was fine at first. He was sitting there quite, then I noticed that his face started looking sad. I asked him what was wrong and he started crying saying that he wished that he could walk around. He just cried and cried.

He is feeling better today. He just told me that he wanted to go to Red Lobster when he gets out of this joint. Its great for him to be planning some things to do when he gets out. Before he has always refused to talk about it because it would make him sad.

God Bless,
Tina

Monday, July 30, 2007 1:03 PM CDT

Nothing going on around here. Job is doing fine and continues to enjoy his trips to the garden. Grandma and Nicole made it to Tammy's just fine yesterday. Job doesn't know they are gone and hopefully they will get back before he asks too many questions about them. We thought that it would sad for him to realize they were going to Tammy's for a whole week. My plan/hope is that once he is out of the hospital, and before we return home, that I am able to take him up there at least for a long weekend if nothing else.

God Bless,
Tina

Saturday, July 28, 2007 6:39 AM CDT

Hi everyone....Grandma is letting me do the update today and I am so glad because I really want the opportunity to share some of the experience I've enjoyed the past couple of days here with Job and crew.....First of all--I would ask that everyone say a specific prayer for Tina, Rob, and Grandma for continued strength and wisdom as they go about the daily job of physically and emotionally caring for Job --THEY ARE DOING A GREAT JOB!! We can only imagine everything that goes into a day here in the PICU--and we won't come close to all that they do and go through. They are amazing and I have a whole new respect for the journey that they are on after just being here with them for a short window of time.

Job is doing really good. I have had the pleasure of enjoying quite a few smiles in the past few days--he certainly still knows how to melt my heart. How do you spell amazing?? J O B...that's how. In the midst of all he is going through, he still finds the energy to worry about those around him. I told Rob last night that it was humbling to be with Job because he lives the life we should all be living even in the midst of such great turmoil---he doesn't complain, he is tough, he continues to push himself through this maze of unknowns, and his faith is ever before him. He has a special annointing on his life and he is a blessing to me.

Job slept really good last night (which means I did too and my family will be REALLY glad!!). Grandma doesn't sleep hardly at all when she is with Job so she can be ready for whatever he might need--I dont know how she does that! Job is really good at letting you know he needs you too. One of his favorite nurses, Mark, was on duty last night and I can certainly see why Job likes him so much. He is very caring and in tune with Job...thanks Mark and all SLCH staff.

I don’t know of any big health changes or issues right now-PRAISE THE LORD. He needed a bit more sunctioning than is usually required yesterday and that isn’t easy on him but he handles it like a trooper. God is holding on tightly to Job and carrying him through this time. He does still tire fairly easily but he is amazingly strong and resilient. Please continue to pray for guidance for all of the medical staff as they make decisions about Job’s care and that they will continue to take such good care of Job.

Thanks Tina, Rob, Grandma, and Nicole for sharing your time with Job with me….I’ve enjoyed it and really feel blessed to have all of you in my life…..Tina-you are amazing with Job and I just wanted to let you know. Don’t doubt yourself and don’t worry….Love you all.
Florence

Wednesday, July 25, 2007 9:47 AM CDT

Hey everyone. I hope you all are having a good day. Job has been doing fine. He is enjoying his trips to the garden every other day. Yesterday Job had a cookie and lemonade stand from his room. There were folks lined up outside his room waiting to buy snacks. He had a great time and made $38.00 to boot.

Nicole and Rob went to the movies and saw "I Now Pronounce you Chuck and Larry". Nicole said it was stupid, so if a 12 year old says that it is stupid and not worth the money then I would advise you to see something else it you are headed to the picture show.

Nicole and Grandma are headed to Michigan on Sunday to visit my sister Tammy for a week. They are flying to Chicago on the 29th and then driving back down with Tammy on Aug. 4th. Tammy's going to fetch them in Chicago and play there for the day before taking them on to Michigan.

We are also in the process of making arrangements for Rob and Nicole to head back to Arkansas. Nicole has to get back for school and Rob is going with her. We have to fly them home so Grandma and I can keep the Space Shuttle (aka our Aztek). Thankfully it only cost $50 bucks to fly from St. Louis to Little Rock. That's cheaper than you can drive even for two tickets.

Oh, I want to share a praise report with you all also. I can't remember if I shared or not, but about a month ago our truck was in an accident and totaled out. Even though we had just replaced the transmission and engine only three years ago, because the truck was a 1994 the "value" was next to nothing. We were wondering what we were going to do when Rob returned home in Aug. and began to look for work. ANYWAY... I just wanted to let you know that God provided a way for us to get another truck. Isn't that wonderful. One thing I definitely know from going through all of this is that God WILL provide for you. He constantly provides for us in miraclous ways.

God Bless,
Tina

Sunday, July 22, 2007 10:31 PM CDT

Nicole and I had a great time on our Passport 2 Purity getaway. It is a wonderful program offered by Family Life. It is designed to help kids make good, Godly decisions during their teenage and dating years.

Job is still doing fine. He is back up to 60 percent on his oxygen, but we have been going back and forth on that for a while. He has been having some spells of anxiety, but it is probably from us weaning so of his meds. Hopefully it will subside soon. He is sleeping really well right now. He is planning a picnic in the garden on Tuesday. He spent nearly 45 minutes up there today.

I can't help but keep my eye on the 28 of July. Just six days left. We'll see what happens...

Tina

Saturday, July 21, 2007 2:48 PM CDT

Hello,
Sorry we missed a few days. Everything is about the same. He keeps asking for oxygen breaths.
He doesn’t ever want to do anything. He didn’t even want me to give him a bath this morning. He usually looks forward to his bath time. He says it refreshes him.
Tina and Nicole haven’t been here since Wed. noon. They took three days off to do a purity lesson together. My little Nicole growing up. Not too fast though.
Job is resting right now. Just dosing. I sure will be glad when he gets his new lungs. I don’t push him now because he gets out of breath too easy. I probably should because I know that the stronger he is going into transplant, the faster he will recover. But I don’t know how much to push and when to just leave him alone.
Please pray for all of us to have wisdom on how to take care of Job in the best possible way.
We love hearing from all of you, it is a blessing. ACH, TCH are also blessing us by posting.
Love to all and May God bless each and every one of you.
Grandma

Wednesday, July 18, 2007 5:02 PM CDT

Everything is going fine. The PICU team was still pushing to decrease Job's O2 rate. I talked to Dr. Sweet about it this morning. Dr. Sweet is Job's primary doctor and is one of the transplant/pulmonary doctors. He is fine with him being at 50%-60% O2 and said he would speak the PICU doctors about it. I am glad maybe to get that hot topic cooled off.

Job got to go back to the garden today. He enjoys it very much. He doesn't have much energy, so his outward expressions are slim to none, but I know how much he loves it. Everyone just wants to see him having a good time, and it is difficult for Job to even sit in a wheelchair for a long period of time. I told him to just close his eyes and relax and enjoy the smells and wind and the feel of the sunlight on his skin. Hopefully soon his energy will increase and he will be able to enjoy it even further.

Thanks for all your prayers.

Tina

Monday, July 16, 2007 12:20 AM CDT

I have posted new photos. The past few days have been a roller coaster of emotions, so the doctors thought the emotional benefits from a trip to the garden out weighed the risks so thats what we did. Not only did he get to go to the garden today, but he gets to go every other day.

We had a whole team of folks with us, even a doctor. We had a doctor, a nurse, and two respitory therapists. Eveything went just fine. We stayed about 15 minutes. Job enjoyed it very much. He said he wished he could just sleep up there all afternoon. HA.

Thanks for all your continued prayers.

Tina

Saturday, July 14, 2007 6:29 PM CDT

UPDATE
well the lungs were not usable. Job took it very good. Then when the realization of not getting new lungs set in he had a good cry with his Mama.

I didn't want to tell him what was going on until we knew for sure. But he was hearing the buzzing around and the additional blood taking etc. and wanted to know what was going on. To keep him from thinking something was wrong with him I told him something good was happening in the background. He kept wanting to know and to keep him from getting stressed out I told him that a potential lung offer had been accepted.
I told him to remember what his Mom had told him in the beginning that we would have dry runs.

God is still in control. Now the Dr.s have had a dry run on Job. Maybe there was something they needed to see. i.e. his true blood type. They asked again what his blood type was. you know he was born A positive now he is O positive after BMT. Also when they took his blood for a blood gas test, it clotted before they could check it and they had to take another one. God says "get your stuff together because I want things perfect for this boy of mine" ha

I remember reading the cross and the switchblade by David Wilkerson. He told his church that he truly believed that God wanted him to go to New York City. They gathered up the money and sent him to NYC. He came home feeling like he had felled. BUT NO! God was getting things set into place. Just like with Job. God is getting everything in order. Job is still in the palm of Gods hand.

I love God isn't He wonderful to love us so very much to want every detail worked out. He's a great God a Righteous King ruler over everything. That’s a line from one of the songs Job likes to listen to and I love it.

PLEASE remember the family that lost their loved one.
Until next time. God bless you everyone.
Grandma

Saturday, July 14, 2007 6:49 AM CDT

A potential lung offer for Job has been accepted. I don't know anything more than that. The coordinator said they are still trying to place other organs and she will communicate with Job's nurse from here on out. I don't have a timeframe or anything.

Please pray that the lungs are GREAT and the transplant is a huge success.

UPDATE Things are buzzing around here. They are doing blood work and all kinds of stuff. Nothing is "official" yet so please keep praying. The nurse was explaining to us that all the organs must be placed first, then they will send the team out to retrieve the organs. They retrieve the heart and lungs last. They will not hesitate to stop the process if anything doesn't look good, such as a bad blood gas or bronch. Sometime during this process we will get a timeline for surgery. The time will not be exact, but just a time to shoot for. Once we get closer, then we will have a more exact time.

Please pray that all goes well.

UPDATE 2 We found out that the lungs are close so there will not be a long transport/retrieval time.


UPDATE 3 Lungs are no good

Tina

Friday, July 13, 2007 9:06 PM CDT

They tried to turn Job's oxygen down to 45again today. He was miserable. He has been very tired the past several days and seems to be getting worse. His eating is deteriating and then they turn his O2 down more. He started worrying about why he was struggling to breath. He asked to be suctioned. Then soon after asked to be suctioned again because he was having a difficult time breathing. He even lost his temper and slammed his fist into the bed and said I am tired of this.

We asked them to turn the O2 back up to 60Grandma is at the hospital and would only turn it up to 50 we are all very frustrated. I know that he will need to be weaned off the oxygen after his transplant, but isn't he miserable enough right now. Somehow his body needs that much O2. I do not understand why his pulse ox always says 100but I know how Job's body is reacting. Two weeks ago he was sitting up all the time eating really good. Yesterday, he didn't sit up at all, and hasn't for the last few days except what PT makes him. We even let him skip PT several time because he was so eshausted.

I am about to go crazy tonight. This is ridiculous. We can worry about weaning the oxygen later. I feel responsible for not explaining to the doctors more in detail his decline in activities over the last week. However, they also didn't tell me that they were going to turn down the oxygen today either. I found out when Job asked for a "breath" and I looked at the machine and it said 45

UUUGGGGHHHHHHHHH!!!!!!!!!!

Tina

Thursday, July 12, 2007 9:49 AM CDT

Ten years ago Grandma had a dream. In the dream she was looking at a digital clock that said 7:28. Although it was shown as time on a clock, she knew that it was a date. That it meant July 28th. This dream was so powerful that she wrote it down and wondered and wondered what it could mean. That year, the date July 28th came and went with nothing significant happening. A few months later, while I was pregnant with Job, we thought about that dream again and started calculating up the possible date that he was conceived. We concluded that maybe July 28th was the date of his conception and that God must have something special prepared for this child. Several times during my pregnancy I had elders of the church lay hands on my stomach and pray for Job.

Rob and I had just started back to church in the spring of 1997 and were really excited about living for God. The months leading up to this transition was full of turmoil and grief. For years we had lived the wild, carefree lifestyle. Rob managed a liquor store for almost ten years and I worked my way through college waiting tables at hotel bar. We both made a lot of mistakes with drugs, alcohol, and even adultery. All the troubles of this lifestyle came to a head in the spring of ‘97 when we decided to get a divorce. We were separated for three weeks when a friend of ours (Steve Bradshaw) tried to get us to sit down and talk one more time before proceeding with the divorce. I remember having no feelings left for Rob. I remember thinking that there is no way that we can recover now, that we had gone too far. I remember thinking there is no way that I could ever feel anything for Rob again. I was done. I couldn’t stand him and really believed it was too late for us. I mean, I wasn’t even sad about it. I didn’t want to try to resolve things. I wanted to get a divorce. Steve kept on until he convinced us to sit down and talk with him. I can’t even remember what was said that day. I just know that God used Steve to work a miracle in our lives. Things have never been the same. That was a new beginning for us. We knew that we had to make some major changes in our lives with the main one being living for God and going to church.

I am now convinced that it doesn’t matter what you have gone through in your marriage nor how you FEEL towards your spouse, God can heal your marriage. You can recover from anything even adultery and have a wonderful, healthy marriage. It doesn’t happen over night. It takes time and it is not without consequences. Rob and I made some very strict rules with each other that we used for a long time while the trust and love were rebuilt.

A few months later I became pregnant. Rob and I would frequently read the Bible together before going to sleep. One night soon after we found out that we were having a son we started reading the book of Job. The book starts like this, “There was a man in the land of Uz, whose name was Job; and that man was perfect and upright, and one that feared God, and eschewed evil.” Rob said that what we should name our son “Job”. He said what better namesake is there than a man the Bible calls perfect and upright. So that was it. We decided that was the name we would give our son. We prayed that he would a man of God just like his namesake. We never imagined that he would endure the suffering too.

Now, as you all know, we hang on to the verses at the end of the book of Job that say, “So the LORD blessed the latter end of Job more than his beginning:…and Job lived, being old and full of days. ” (Job 42:12a, 17).

As I was driving to the hospital this morning, I remembered Grandma’s dream. What if the clock signified that we will be watching and waiting and the date of 7/28 will be the date Job gets his new lungs. Just a thought that I wanted to share with you all.

God Bless,
Tina

Wednesday, July 11, 2007 9:16 AM CDT

Well this is Wednesday morning July 11, 2007. Last night Job was sick to his stomach again and threw up. He is sick again this morning and feeling weird (he said). I think it has something to do with the weaning down of some of the meds (at least the weird part). They had to give him Zofran last night and gave him riglan (sp?) this morning before he could take his meds.
His nose has been running a lot. I don’t know if he has some kind of head cold or not. He hasn’t been running a fever. So that’s good.
He has a new toy he enjoys playing with. Amy gave him a suction catheter (like we use to suction his trach with) to suction his nose since it is so thick. He changes it out himself and clears his nose out. We put it in a bag and wrote on it “Job’s Nose Control”. Someone had tried to get him to do that the other day but he didn’t want to. Now he feels like he has some control. Ha. Amy played playstation with him while he watched. I think she will be his Nurse tonight also. She is really nice.
He is finally resting, he didn’t rest very well last night. He kept tossing and turning. That may not sound like such a big deal, but, when Job needs to turn over he needs help with all of his tubing. So it takes a bit to get him fixed, then he is wide awake and has to get back to sleep. Not only does he have his two breathing tubes attached to his neck, he has a blood pressure cuff attached to his leg (sometimes an arm), a Pulse/Oxygen thingy on his toe (sometimes a finger), and five leads (wires) attached to his chest plus a central line with two tubes hanging down about a foot each from his chest .
With the tubing attached to his neck, he has to have a collar to hold the trach and everything in place. He told his Dad, “I feel like a dog on a leash”. His Dad told him, “well I’m glad that your dog house is big enough for all of us to fit in.” ha
Well I guess I’ll hush, Rob is going to be with Job today.
God is never late, He is always an “on time God”. He knows what He is doing and what He wants from all of this. I Pray that I’ll never forget that.
God Bless all of you very much,
Grandma

Tuesday, July 10, 2007 10:15 AM CDT

Job's tummy was feeling much better by yesterday evening. He was even dancing in his bed while Nicole was playing some music on the computer. He still stays tired most of the time, and I hope, hope, hope that changes soon. They stopped the Ativan yesterday so that should help. They are going to decrease the Clonadine again on Friday and we are dropping the Prednisone another 5mg today. That takes him down to 40mg of Prednisone per day. I think the goal is to get him down to 25mg per day.

He baked cookies yesterday with Becky and had a water fight with them today. He really enjoyed both, but tired really easy.

Transplant coordinators came by yesterday and talked to us. They said that Job has had a bunch of offers, but none good enough yet. That is encouraging to hear some action going on in the background.

Job said the other night that he feels like a dog with his collar and leash. Rob said that at least his dog house is big enough for us all to fit into.

Whoever first wrote the science fiction stories about freakshow patients staying in glass display cages must have spent a lot of time in ICU. HA!

Tina

Monday, July 9, 2007 1:49 PM CDT

Job has been sick at his stomach the last 24 hours. We're not sure what is going on. He hasn't had a fever. They are running blood cultures to test for infections. They have stopped the Ativan, which could be causing him some discomfort after being on it so long. They are also weaning the Clonadine . So it could just be some withdrawal effects from that stuff. Hopefully that is all it is and he will get to feeling better soon.

Saturday, July 7, 2007 7:28 AM CDT

Hello to all - everything is going well here. I spent the night with Job last night, which I rarely do now that I am gainfully employed. Actually I'm averaging about one night a week, staying with Job that is. Seen there hasn't been a recent posting lately so I thought I'd give it a go. Tina won 3 tickets from the HavenHouse for the 4th of July Cardinals game. So Angel girl, her and I watched the Cards come from behind in the bottom of the eighth to beat the Arizona D'backs. After the game was over we stayed in our seats and watched the fireworks show that was going on at the river in front of the Arch.
Job seems to be doing great. No real drama the past few days thankfully. His attitude and demeanor has been like his old self, at least since I've been here the past 12 hours. We played Bookworm Adventures on the computer last night with him actually using the mouse to spell the words out which is how the game is played. I watched him play for an hour on his own. It was so great to see him engaged. We sure miss being home and all of you as well. Can't wait for this season to close and the next chapter to begin in these adventures with Job. I long for the days to see my boy running across the church yard with the rest of his friends. Thank you all for the prayers and financial support. We could not have endured the journey this far without them.

Be blessed,
Rob

Wednesday, July 4, 2007 8:46 AM CDT

Well, they were weaning the oxygen too fast for Job and he didn't like it. He quit eating and felt even more tired than normal. Around 5:00 they went back up to 50% and after a while he felt better and ate two hot dogs and 1/2 a personal Pizza.

Today is the 4th of July and everyone keeps reminding Job of that fact. I wish they would hush about it. At least he does get the day off from physical therapy and he is glad about that. The Child Life gal, Becky, said she was going to sneak him some cool stuff down from the party they are having on the 8th floor. I pray that he feels good enough to play with it.

The folks that Rob works with at Ruby Tuesday bought Job a Nintendo Advance and two games. I thought that was really nice and caring. I also found out that Windstream Communications, that where I work, held a fundraiser for us a week or so ago and it was a great success.

Thanks for the continued prayers and support.
Tina

Tuesday, July 3, 2007 11:56 AM CDT

Job has been doing good. They successfully decreased his oxygen from 60o 40He hasn't really even noticed the difference. They have gradually been bumping it down over the weekend. If he continues to SAT at 100ith is O2 at 40then they will probably wean down his Prednisone a little. Right now he is on about 50mg per day.

He has still been pretty tired. Yesterday he received IVIGs which hopfully will make him feel better. He has been a good mood also, just tired. He has a good outlook on things and hasn't been sad in a while.

Thanks for your continued prayers.

Tina

Sunday, July 1, 2007 2:46 PM CDT

Job felt better yesterday. He still sleeps a lot, but he was feeling like doing a few things when he was awake. He sat in a chair and played UNO with Nicole for a few minutes. a few hours later after a nap, he got back up in a chair and exercised his legs for me a little. His reward was a foot soak. He was ready for another nap after that.

He slept really good last night. He has developed a habit of waking up at 2:30 in the morning for something to eat. He went right back to sleep after eating though. The nurse got on to him yesterday for eating too many hot dogs. She said he needs to eat a variety of food so that he can get the vitamins that he needs to be healthy. So he ate a cheeseburger for supper. HA. I think she probably meant veggies.

Rob, Nicole, and I went to church today at West County Assembly of God. It was a good service.

God Bless,
Tina

Friday, June 29, 2007 2:05 PM CDT

12:00 noon: Tina says that Mark (the awesome Nurse) stayed after work to get Job's trachs cleaned and ready. He is so good with Job (I'm sure with all of the kids he takes care of) He doesn't mind going that extra mile. He is crazy ha but Job loves him and Trusts him. He is very compassionate
Switched out with Tina. Nicole came with me but left with Tina.
1:00 p.m. gave Job a bath.
Suctioned 3 times before 4:30
4:00 jittery
4:10 Nel comes in he doesn’t feel like seeing her.
4:15 climbing the walls
Sleeping sideways in the bed with his legs in my lap
From about 5:30 until 7:00
7:00 ate ¼ hamburger with bun
7:30 needed suctioned. Coughing right out the trach.
7:37 resting again
7:48 resting
7:53 they came in to draw blood
8:05 they are through Flushed and heparin locked
8:07 they forgot one vial so they need more blood,
8:15 they are through, flushed and heparin locked
he turns over to rest
RT comes in with breathing treatment
8:25 takes more meds, Resting
8:50 they come in to tell us that they are getting the meds and that they are about to come in????
9:00 here they are just like they said
9:40 finally sleeping again
10:50 still asleep no interruptions.
10:50 another blood pressure med. Plus prod and prob. Didn’t really wake up.
10:55 gone again
12:25 still asleep
12:25 RT comes in and gives him his treatment
Nurses come in and give him another blood pressure pill
He wants a snack Petit Jean Hot dog on Wonder Bread
12:45 lays back down to sleep
1:15 needs suctioned / he gets suctioned
1:25 wants to lay sideways with feet on pillow in my lap.
2:10 My Break, he didn’t even wake up. I put the side rail up and laid his legs over it with a blanket under his legs.
4:00 Straightened him up in bed. His butt was dragging on the bed frame. The air mattress doesn’t know what to think of somebody laying sideways on it. It woke him up.
4:15 Time for another Petit Jean wiener and a slice of bread.
Says he can’t go back to sleep straight in the bed. I said that I needed to walk around a little bit. So maybe he will go back to sleep.
5:00 sideways again but sleeping good
7:00 almost shutdown I’m going to make a run.
7:15 hang on he needs to be suctioned, now time for Cinnamon Toast Crunch & Milk
7:30 Back to sleep 8:30 time for meds Changed trach collar, 9:00 time to sleep sideways again.
10:30 Nurse comes in to take his temp etc. I see him open his eyes a little bit. I told the Nurse well I guess he is going to miss the bath before I leave. His eyes pop open and he says he is ready for a bath. Ha We just barely got through before Dad came in. He got there at 11:30. Well I guess I’ll hush.
Love to all, You guys and gals are wonderful to us, A great big sooooooweee for you all.
Grandma

Wednesday, June 27, 2007 7:22 PM CDT

Well again Job started off a little jittery but most of the night went really well.
About 5 or 6 he was feeling jittery and they had already giving him Adivan and Bendryl but they didn’t stop the shakes. His blood pressure was up and his heart rate was high, he said that he had a headache and felt light headed. But after a little while he settled down and had a pretty good night. I just kind of watched him and let him sleep as long as he would. He has talked me into giving him a bath when I get there and just before I leave. Of course I’m there twenty-four hours. He really likes his baths. He misses being able to get in a bath tub and lay down. I held him in my lap for a little while several times. With the vent being on the same side of the bed I can just lay a pillow on the arm of the chair to help hold his legs and have him hold the vent tubes until I get settled and then he snoozes while I look at my little precious boy.
I love you all, Pray, Pray, Pray that this little boy gets his new lungs soon.
Grandma

Tuesday, June 26, 2007 7:55 PM CDT

Since Job will not be allowed to leave his room, they have compensated by moving him to a room with a view. He is in room 16 now. Rather than looking at the parking deck and the side of the other hospital, we now overlook the park and zoo. We can see far into the horizon...trees and skyscapers in the distance. It is beautiful. Job was happy that we moved.

Job had been having a lot of trouble with tremors over the past few days. We have decided to stop the antidepressants because we are pretty convinced that is what is causing it. He can't sleep. He can't rest. Tey are cutting the dose in half for four days ten stopping it all together. Its just an additional med that he doesn't need.

He finally got his hair cut. It looks really good. It had gotten so long, I tried to alway throw his hat on him whenever I snapped his photo or at least try to wet his hair down because it would usually stand straight up in the middle like a mohawk.

Please say a prayer that the tremors will stop and that he will get to feeling better. Please, please pray for God to provide these lungs quickly.

Tina

Monday, June 25, 2007 12:25 AM CDT

Dr. “rounds” are supposed to be from 7:30 a.m.- 10:30 a.m. at which time the unit is on lockdown. If you are in the room you can’t go to the bathroom or you won’t be able to get back into the unit/room. We schedule our switch for 11:00 because of their schedule. Nicole and I got to the hospital at 11:00 and they won’t let us in. They didn’t open the doors until 11:30. It isn’t so bad on that side, but when I’m in the room and needing to go to the bathroom it’s hard enough to wait three hours. Then to be told after three hours of holding it that you still have to wait another hour. I think it is a mental thing. Like your not thirsty until the water is out, then that is all you can think about.

Job likes sitting on the side of the bed. He asked several times to sit on the edge of the bed. Which he did.
He played Uno with Nicole, I don’t know who won.
He didn’t eat as much today as I had hoped. He ate an individual serving box of cereal with milk this morning. ½ cheeseburger at lunch, and ½ cheeseburger for dinner. Oh yeah he ate a Petit Jean Weiner in there somewhere. Drank a little Sprite (he wanted a Mt. Dew but we couldn’t get one).

5:45 Job is sad about being sick. He says he can’t remember how this particular journey got started. He said it seems like a dream and then he changed it to a nightmare.
Says his chest hurts. He says that he just wants to go to sleep and rest but that he can’t get to sleep. I asked the Nurse if Job can have some Bendryl.
6:10 Job is asleep, 6:11 RT comes in wakes Job up for his treatment.
8:45 Job is asleep again, 8:50 Nurse comes in with all of his night meds, Wakes Job up.
9:10 Job gets back to sleep, 9:12 some girl comes in to look at his central line and starts talking to him
9:35 Job is anxious and shaky and scared. Asked me to pray. His chest hurts. Heart rate got to 187 the alarm going off. The Nurse says (while standing at the foot of Job’s bed) “Well he has to be aware of his mortality, seeing where he is at and all that is going on around him”. What the HECK was that said for? Very nice Nurse I just Don’t know why she said that. Job isn’t stupid he knows to much about his “mortality” especially for a nine year old.
Nurse gives him Bendryl.
10:00 Job is sleeping. The Nurse put a sign on the door to not disturb Job for at least four hours. (2:00 a.m.)
it’s 11:25 Job woke up and asked for a wet wash-cloth for his head and went back to sleep.
12:00 Midnight, Job wakes up needs to potty, goes right back to sleep.
2:15 Job woke up and wants some cinnamon toast crunch cereal but no one can find any milk, even though he had ask for some seven hours ago and they had said that they would order it for him. Shift Change so pass the buck. The Nurse finally found him some skim milk so he could have his cereal.
This morning he ate some cinnamon toast crunch cereal, with real milk.
The Doctors said that Job wouldn’t be able to get out of the room because they don’t let kids with such high vent settings out on portable vents. But they did agree to move the vent on the other side of the bed like Job suggested.
His tummy is hurting again but it is two hours before he can have anything else.
May God Bless all of you for keeping us in your Prayers.

Grandma
p.s. I had this in word and had wondered if I should post it. I guess Tina saw it and thought she would post it for me. I was rattling on so, it sounded kind of nuts-so.
I did get Job to laugh though. I asked him if I ran out into the hall screaming "we need milk" if we could get some. Then I said if I got on my knees and and said, "please could we have some milk" if it would help. He said that they would take me to the looney bin. ha The Night Nurse had brought him some skim milk which I didn't tell him it was skim milk and he didn't notice.The day Nurse found us some milk. she had to try several places but she brought Job some milk for his cereal. We were just being silly not that we were so desperate for milk.I enjoyed seeing him laugh.
Love to all,
Grandma

Friday, June 22, 2007 4:06 AM CDT

UPDATE @ BOTTOM
Job had a rough day. From noon until eight-thirty p.m. anyway. He kept needing to be suctioned. It would make him cough really hard and was just wearing him out. Finally he told me that his trach needed changing because it felt like it had a plug in it. I told the Nurse and she got things buzzing. Job said that he wanted Mark to be the one to change it. So after finding out how to sterilize a trach etc. they proceded to change it. I was glad that Tina and Rob had come to get Nicole so they were here also. Everything went fine they got it switched and Job said he could breath better. Through all of it his attitude remained tiptop. He hasn’t had to be suctioned again and it is 3:35 in the morning and they changed it at about 9:00 p.m. I think. He has been sleeping very well. He woke up about thirty minutes ago to potty and then wanted a couple of Petit Jean Weiners and a little bit to drink then went back to sleep.

Florence, I want to apologize for making you think that Job was up-set that the package didn’t arrive on Tuesday. He has been in such a good mood lately. When he found out that they wouldn’t be here until the next day he just started counting the hours. He would ask me how much longer every time he would wake up, but kind of silly like. You have nothing to be sorry about. He was so happy about getting them and the Pokemon Cards as well. We all love you very much.

Everybody, everytime you go by Wye Mt. Store stop in and buy a sausage biscuit. Tell Elizabeth that your eating it in honor of Job. Bless her with news also. She doesn’t have a computer where she can keep up with his progress.

We love you all and want to thank you again for all of your prayers. They are working. I always knew they were but it is so good to see some things turning around. We still have a long road ahead of us so continue to pray for his health. Lungs, legs, strength, eyes. If God puts it on your heart pray for it.

God Bless Each and every one of you,
Grandma

UPDATE:
It is 5:50 in the morning and Job has three Lady Nurses in here playing Uno with him. They can’t believe that this is the same boy that they have been taking care of. He is so UP & smiling.

Thursday, June 21, 2007 0:42 AM CDT

NEW PHOTOS ADDED

Job is feeling the best he has felt since this all began. I can’t tell you how much I appreciate all your prayers, because I know God is blessing us. We are finally getting to see Job again. His sweet, sweet personality is shining through all of this other stuff. He is smiling and laughing and cutting up. He even played UNO with Nicole today sitting on the side of the bed (see the photo). You just don’t know how big of a deal that is. He would hardly do anything but sleep and he ASKED to sit on the edge of the bed and play cards with Nicole. He played twice about thirty minutes each time this evening with her after sitting up with OT this afternoon for a half hour.

It is just so wonderful to see his smiling face again. I have missed him so.

Thanks for Florence, Job got some special treats today. She shipped him some of the wonderful Wye Mt. sausage biscuits that he loves so and also some Petit Jean Cedar Falls hot dogs. He couldn’t wait until they got here. He has ate two biscuits and three hot dogs already.

Job says, “Thanks for your prayers.”

Tina

Wednesday, June 20, 2007 6:42 PM CDT

Job got his Wye Mt. Sausage Biscuits and Cedar Falls Wieners / Petit Jean Weiners. He was disappointed that they didn’t come yesterday. All through the night last night he would wake up and ask me what time it was and how much longer until the Package would be here. He ate a sausage biscuit right away. I want to thank Elizabeth of Wye Mt. Store and Florence Rappold VERY MUCH for Making this little boys day. He doesn’t get excited about very much. He was also very excited about the Pokemon Cards Florence sent.
He has been in a good mood for a few days now and it is wonderful. He smiles and acts silly sometimes, very refreshing. The sad times are very tough. There is nothing you can do or say to cheer him up. Talking about happier times only makes him more sad. He still doesn’t have a lot of energy. Physical Therapy wears him out so easily. He still can’t stand on his own. He can sit alone quite well and for a good bit of time. But his legs are very weak. Please Pray for his legs to get stronger and to be straight. His arms are pretty strong comparatively.
Sorry that we skip days between updates. I’ll try to do better. I know that I would want news even if it was a sentence or two of an update.
We love you all very much.
Grandma

Monday, June 18, 2007 10:05 PM CDT

UPDATE: Job got the NG tube out this morning (the tube in his nose). Since he has been eating and drinking so well, they agreed to take it out as long as he takes his meds okay. We all know that Job is an expert at taking meds. YIPEE!!! He is very happy to have his nose and throat back. I will post a new photo soon.

Nicole and I got all dressed up for church last night and when we got there, the parking lot was empty. I had checked and found out that their evening service was at 6:30, but I guess it was dismissed due to Father's Day. So we went to Wal-Mart and bought her some new shoes, and then to the movies and saw Shrek the Third. She had already seen the movie, but I hadn't and I wanted to catch it before it left the theaters. We had a good time. We found a beautiful mall with a theater inside. All the shops were closed because it was Sunday evening, but it was still a cool place. We are definitely going back there and doing some window shopping.

Job has been in such a good mood. It is so great. He still sleeps a lot and doesn't want to do anything, but at least he is smiling and cutting up a bit. That is so much better.

I know that we have started it antidepressents, but they aren't what's helping because we just began those and we were seeing these improvements before. I am convinced that it is that crazy patch that we have been battling for a while now. They change it to an oral medicine last week, and look at Job now. That is really all that we have changed and he is smiling and happy (relatively). It is great. I can't wait until he actually feels like doing something. He still gets the Adivan 4 times per day and I know that keeps him sleepy, but he may still need it for his high CO2 levels which cause anxiety. However, his last CO2 (vainous) was 80. That is FANTASTIC for Job.

Anyway, I am just holding my breath, waiting by the phone for the "call" that we have lungs. Hopefully it will be SOON.

God Bless,
Tina

Sunday, June 17, 2007 7:05 AM CDT

Job had a very good night. He is eating good and has a very good attitude. He had trouble getting to sleep, he would just dose in and out. Bendryl took care of that. He went to sleep after taking Bendryl at 2:00 a.m. and slept until 6:00 a.m. when he was hungry and wanted some Fruity Pebbles and milk. Then he went back to sleep.
Tonight he had awesome Nurses, Mark & Jeremy. Since we started this journey we have seen some wonderful hospital staff. Nurses, Respiratory & Main Doctors. But the Nurses are the ones we see the most and although you do get a nut-case every once in a while, most of the Nurses are very compassionate and experienced. Here at St. Louis we have Mark, Jeremy, Amy, Kim, Mary, another Kim and Rachel. I know that I left someone out but it is early in the morning. I would like to thank each one of them individually, everyone that has been so patient, compassionate, and loving to Job through this journey, from 2002 – 2007 Wonderful People at:
Arkansas Children’s Hospital in Little Rock, AR.
The Methodist Hospital in San Antonio, TX.
Texas Children’s Hospital in Houston, TX.
Children’s Hospital in St.Louis, Missouri
Wonderful people in all of those hospitals and I wish I could let them each know how much we appreciate all that they do and have done.
We Love You All,
Grandma

Saturday, June 16, 2007 9:38 AM CDT

It has been a quiet couple of days around here. Thankfully no drama. Job has been eating good and has been it a better mood also. We did start him on antidepressant medicine last night, but it will take several weeks before it really begins to help him.

Nicole had about four inches cut off her hair. She like it and says that it is much cooler. She is having a good time being here and spending time with Job.

Hopefully, the God will provide lungs soon and we can begin the healing process.

Tina

Wednesday, June 13, 2007 8:17 PM CDT

Today was a good day. Job sat in a chair for a little while for the first time since we have been in St. Louis. He watched Nicole play Game Cube for several hours today. He also ate really well. The dietician says that he has really ate well the last couple of days. We are continuing to count calories for the rest of the day and will decide tomorrow whether or not the tube feeds should be started up again.

All of the kedney tests that have come back so far have been good. His swelling has gone down so well that his hands and feet look normal now.

He has had a few offers for lungs, but the transplant staff have rejected them all so far. However, it is exciting to me to have some offers. Dr. Sweet, which is Job's primary transplant doctor was also encouraged that Job's name has been coming up for offers.

He had his photo taken today to be used in a presentation as an example of a child waiting on a lung transplant. The presentation will be to encourage organ donations via the United Network for Organ Sharing (UNOS).

God Bless,
Tina

Tuesday, June 12, 2007 4:17 PM CDT

Read New Update at bottom of page

I put this on the guestbook but I felt strongly that I should've put it here so now it is on here twice.

Job was depressed this afternoon. He was saying again that he was tired of Hospitals and being sick. He said that he was afraid that he was going to Heaven. I tried to talk to him as best as I could without crying and making it worse.
I told him that is wasn't his time to go to heaven yet. I told him that when his time came to go to Heaven he wouldn't be afraid. With so many children dying around him it is hard to keep the faith that "not Job" I keep repeating Psalm 91. I know that God is no respecter of persons and that God doesn't love Job any more or any less than the other children. But I also know that God has different plans for each of us. Therefore I will continue to believe Psalm 91 for Job Harrison Mccully.

Psa 91:1 He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty.
Psa 91:2 I will say of the LORD, [He is] my refuge and my fortress: my God; in him will I trust.
Psa 91:3 Surely he shall deliver thee from the snare of the fowler, [and] from the noisome pestilence.
Psa 91:4 He shall cover thee with his feathers, and under his wings shalt thou trust: his truth [shall be thy] shield and buckler.
Psa 91:5 Thou shalt not be afraid for the terror by night; [nor] for the arrow [that] flieth by day;
Psa 91:6 [Nor] for the pestilence [that] walketh in darkness; [nor] for the destruction [that] wasteth at noonday.
Psa 91:7 A thousand shall fall at thy side, and ten thousand at thy right hand; [but] it shall not come nigh thee.
Psa 91:8 Only with thine eyes shalt thou behold and see the reward of the wicked.
Psa 91:9 Because thou hast made the LORD, [which is] my refuge, [even] the most High, thy habitation;
Psa 91:10 There shall no evil befall thee, neither shall any plague come nigh thy dwelling.
Psa 91:11 For he shall give his angels charge over thee, to keep thee in all thy ways.
Psa 91:12 They shall bear thee up in [their] hands, lest thou dash thy foot against a stone.
Psa 91:13 Thou shalt tread upon the lion and adder: the young lion and the dragon shalt thou trample under feet.
Psa 91:14 Because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name.
Psa 91:15 He shall call upon me, and I will answer him: I [will be] with him in trouble; I will deliver him, and honour him.
Psa 91:16 With long life will I satisfy him, and shew him my salvation.

UPDATE 7:45 p.m.: This evening Job was feeling good even acting silly & cute. So much different than earlier. Thank you Jesus and thank you Prayer Warriors.
Grandma

Monday, June 11, 2007 11:52 AM CDT

Thanks for all the prayers and encouraging words. I do feel better today. We also got clearance to have the computer in Job's room. I am really glad for that. So here I am sitting beside Job posting an update. Praise the Lord.

I posted the address to the Haven House above. I also posted our home address. A friend of ours is picking up our mail and sending it to us, so we'll get it that way too.

Our little dog Gracy had to stay back home with the Dillingers. I wish we could have brought her with us, but neither the HH and nor the RMH allow pets. We were able to view the AWE videos just fine. THanks.

Tomorrow, Job will have a psych evaluation tomorrow because his depression. We are hoping to get him on maybe some antidepressents to help him some. Nicole being here is helping a bunch. He enjoys watching her play video games, but that is about all he does for enjoyment besides eat. He is eating pretty good so far. Maybe we will not have to start the feeds again.

We had dinner with some old friends of ours last night. They lived in the apartment above us in Conway, Arkansas 13 years ago when I was pregnant with Nicole and Kim was pregnant with Kayle. The girls were born three weeks apart. It was really good to visit with them.

Tina

Sunday, June 10, 2007 12:48 AM CDT

Job's kidneys aren't functioning exactly properly anymore. They have also put him on high blood pressure medicine. He has a lot of trouble with his stomach hurting so they gave him a two day trial of eating on his own without any feeds. They are counting calories and will decide tomorrow if he is eating enough to leave the formula out of his diet.

Rob is at work and Nicole and Grandma are at the hospital with Job. I didn't even want to get out of bed today. It took all the energy that I had just to get dressed and walk over here to the computer lab. I've only been in St. Louis a week and I am so tired of being here. I definitely feel more isolated since our communication is very limited with our friends and family. I am sick of hospitals and doctors and medicines. Everything is just trial and error and miscommunications. Thank God that we are depending on him rather than medical plans and potions. Everytime I feel frustrated with the way things are going I remind myself that we are depending on God not on respiratory therapist and nurses. We are depending on God, not on hospitals or transplant programs. We are depending on God, not on doctors and medicines. God is the only one that can deliver us from our affliction. God is the only one that can provide Job deliverance from his bondage and torment. God is the only one that can restore Job's health.

Johnathan Prado passed away on Friday. Please pray for his family. The link to his website is below.

Tina

Friday, June 8, 2007 12:32 AM CDT

Hey all. Nicole and I are just hanging out at the computer lab at the Haven House (HH). Rob is at work. Yeah, that's right, ROB'S AT WORK! He started at Ruby Tuesday today. It's located right next door to the HH. It will help him keep busy and bring in a few dollars. Grandma's at the hospital with Job today. She said everything is going fine. He ate a good breakfast and even helped order his food for the rest of the day. Usually he just tells us to order him whatever.

The Dr. decreased his Prednisone to 24mg twice a day yesterday. He said he wants to get him down to 24mg once per day, but will probably wait a while before decreasing it again.

Job got a visit from a dalmation yesterday. She sat on the foot of Job's bed and licked his hands. He loved it. She is coming back on Monday and her owner said she would make sure and bring her back by Job's room.

God Bless,
Tina

Wednesday, June 6, 2007 9:11 PM CDT

I finally got the pictures uploaded! We are now partly in no less than three (or four depending on how you count them) houses with our ongoing transition to Michigan. Needless to say, our stuff is scattered, making simple things, like uploading photos, very complicated. Anyway, they're out there now, so take a peek!

Tammy

Wednesday, June 6, 2007 7:04 PM CDT

Well, there's not much to report, but I guess that is something to report by itself. Job hasn't had any anxiety over the last day or so and that's very good. He ate a full bowl of cereal this morning. He's still really swollen from the heavy steroids and they also affect his mood so just pray for the side effects to be easier on him than they have been. More updates when I get any information.

Tammy

Tuesday, June 5, 2007 10:45 AM CDT

Hey all. I still haven't found a good routine for updating the website, but I'm working on that. The PICU here at St. Louis Children's Hospital (STCH) does not allow cell phones or laptop computers in the rooms and does not even have a room phone to use. Having the laptop in the room sure helped us keep our sanity during the long hospital days, but we'll have to find other things to pass the time. The PICU does not have a parent bed in the room

Job probably feels like he is getting more air on this vent because they increased his PEEP from 6 to 10. Remember that is the amount of air remaining in the lungs after exhale. When he was initially intubated, his PEEP was 15, which is an extremely high number from what I understand. An average person, with normal breathing usually has a PEEP of 5 naturally.

Job's CO2s are still running around 106 on average, however it did jump to 165 after he first got here. That is probably why they put him back on 100mg of Prednisone per day again. Yes, you heard me right 100mg of Prednisone per day. They did say that they never intended to leave him on that much and plan to start weaning it soon. Even at that dosage, he is still actively waiting for lungs to become available.

The hospital here has a Progressive Care Unit (PCU), but they told us not to expect to be transfered there. I believe Job's CO2 levels will keep us in PICU until they improve or he gets his transplant.

God Bless,
Tina

Sunday, June 3, 2007 8:42 AM CDT

Tony and I have finally made it back to Michigan (as of 4:30 this morning) and I wanted to post an update while I was thinking about it.

We got to see Job yesterday!!!! I loved being able to see him, but it sure is hard to see how tough the little fellow has it. On the bad side, his little face is swollen from the steroids and he has a bit of a mustache (this happened in San Antonio with the BMT). He can't talk but he can move his lips slowly enough that it's not that difficult to understand him. They have to snake a long tube down his trach to suction it out and that was very hard to watch. On the bright side, he ate almost an entire hot dog (with bun) and it was hilarious. I wasn't holding it so that he could get a big enough bite, so he took it and...well...attacked it. He also drank an entire container of juice and was working on some punch when I finally had to leave. I don't think he's been eating much lately, so it was great to see him enjoy that so much. Also, he is officially active for transplantation now! He's on the same type vent that he was on at ACH and his anxiety is gone (according to Dad), so it seems that the vent at TCH wasn't doing something right for him (just a guess). He's in room 8 in PICU by the way. They don't have a bed in the room (just a couple of chairs), so Rob was completely exhausted (I could tell because he got the giggles a couple of times and it was really cute).

Mom, Tina and Nicole FINALLY arrived a bit after 8pm (we had been there since 5:30 and since it was just a stop in the middle of an 11 hour drive, we were having to get ready to leave). They were getting set up at the Haven House and there was a lot of paperwork to do. The bad thing about the Haven House is that it's $25 a day, but the great thing is that it has a private bathroom and they provide two hot meals a day. Anyway, all that added up to the bizarre situation of me getting to finally see Mom and then having to leave 15 minutes later! I was very glad that I got to get my long visit in with Job though because I knew that when Mom, Sis and Grandma got there after being away from him for so many days, they would be itching to see their boy. I had to leave pretty quickly anyway because I had to help Tony find the rats that got loose in the car (for those of you who know me, this won't surprise you because things like this just happen to me, ha).

Also, the CO2 machine went off a LOT because it beeped everytime he went over 99, but it didn't hover over 99. Rob said that the machine was not very accurate though and that to get a true reading, they had to do an ABG(?) test so I don't know the official reading becuase they didn't do a test while I was there.

Hopefully I didn't ramble too much (long long long day yesterday and no sleep to speak of yet), but I wanted to tell everything I knew. Keep your prayers coming because he's in a serious and scary place, but with God's blessings, he will come through this like he has with all his other trials. I'll post the pictures of him eating his hot dog sometime today so you all can see it.

Aunt Tammy

Sunday, June 3, 2007 8:49 AM CDT

Whew, we finally got our family back together. Everything is going fine. We are staying at the Haven House right now. The apartment fell through and we were scrambling on Friday to find somewhere to stay. The Haven House is nice, but it is more expensive ($25/day) and about 15 miles away from the hospital. It does serve two meals per day and has a gym so that's cool.

We are have a time with internet service. We are not allowed to use the computer in the PICU room and the wireless signal in our room at Haven House is very poor. They do have a computer lab though and the internet works great there.

Rob and Job were very glad to see us yesterday. I am so glad we finally got here and settled.

We are looking for a church to go to this morning. We just searched on the internet and found one.

Tina

Friday, June 1, 2007 9:36 AM CDT

OK, we have an electronic gremlin afoot!! I wrote a long update yesterday and when I checked it this morning, the old update was in the journal history AND on the front page. Without boring you with the details of computers crashing, cell phone blackout periods, and electronic gremlins, I'll get right to the point.

Job's CO2 was up to 130 on Wednesday, so they gave him trebutyline but then stopped it because it wasn't working and are trying him on another steroid. It was 111 on Thursday morning and 106 last night so it's coming down but it's still extremely high. They also had to give him IVIG's for the first time in years (I think I have the timeline right). Tina suspects that the cellcept medication they had him on lowered his immune system too much which caused them to give him the IVIG's. He had to have surgery yesterday morning to put in a Broviac (Tina spelled it for me but I've lost my note pages since I thought I'd already posted all of this) central line because his port suddenly stopped working after five years of fairly reliable service. The doctors and nurses were surprised that it lasted that long, so its failure is not that big a surprise, just funky timing. They'll have to do another surgery to install a new port at some point, but he would've had to have had the central line installed before his transplant anyway. The port's malfunction just moved up the timeline. He came through the surgery just fine, thank God.

He is still on hold for the transplant pending the doctors' evaluation. UPDATE: I just called Tina to get a followup and she said that they're doing the paperwork to get him active and back on the list TODAY. Also, his hemoglobin was only 6.7 so they have to give him blood too. His anxiety and shaking have been much better lately and that's a huge relief.

Nicole had her graduation last night and her last ballgame today, so Mom, Tina and Nicole are heading out to St. Louis first thing in the morning. I'm heading back to Michigan (my new job) with Tony (my son)tomorrow and am going to get to "swing by" St. Louis on the way. I'm very excited to get to see them again and since St. Louis is only about 350 miles from St. Joseph MI, I will get to see them much more often than if they were still in Houston. I had a dream about Mom last night and she was about 27 and beautiful with long chestnut hair, so I guess I'm missing my Mama more than I even thought! LOL

Ok, I'm going to try to post this one more time and it had better work this time because I know everyone is very concerned about Job's progress.

Tammy

Tuesday, May 29, 2007 4:25 PM CDT

Journal

Tuesday, May 29, 2007 10:54 AM CDT

Papa Eagle has landed with Baby Eagle in St. Louis and everything is going great so far! We were much more concerned about Job making it through the flight than I think anyone let on, but everything went great! More news later (when I get some myself).

Tammy

p.s. Mom just called and said that they were approved for a RMH apartment! No details on the setup, but presumably it will be better than just the one room at the RMH (not that they weren't very grateful for that, but it's amazing how much you take a private bathroom for granted).

Tuesday, May 29, 2007 4:25 PM CDT

Journal

Tuesday, May 29, 2007 10:54 AM CDT

Papa Eagle has landed with Baby Eagle in St. Louis and everything is going great so far! We were much more concerned about Job making it through the flight than I think anyone let on, but everything went great! More news later (when I get some myself).

Tammy

p.s. Mom just called and said that they were approved for a RMH apartment! No details on the setup, but presumably it will be better than just the one room at the RMH (not that they weren't very grateful for that, but it's amazing how much you take a private bathroom for granted).

Tuesday, May 29, 2007 10:54 AM CDT

Papa Eagle has landed with Baby Eagle in St. Louis and everything is going great so far! We were much more concerned about Job making it through the flight than I think anyone let on, but everything went great! More news later (when I get some myself).

Tammy

Tuesday, May 29, 2007 5:28 AM CDT

Job had a pretty good night. He was asking for breaths at first. RT and the Nurse suctioned him good with saline and cleared him out. The Nurse gave him a bath, benadryl, & Adivan. He slept pretty good through-out the night. This morning they suctioned him again so he could breathe as well as possible for the trip.
They stopped his feeds at midnight. They have him on an iv drip to keep him hydrated.
He was asking for a drink of water this morning and I couldn't give him one but I gave him a small ice chip.
I'll try to add more before they leave.
Praying and believing for a safe journey.
Love in Christ,
Grandma

Monday, May 28, 2007 7:19 AM CDT

Last night Job didn't sleep well. He kept wanting "breaths". I talked to the Nurse about us giving him too many breaths and she said it wasn't the minute breaths that we give him that cause his co2 to go up. She said a person with COPD couldn't be put on high oxygen for long periods of time because it would damage their lungs. Then I talked to a Dr."white Coat person" She was listening to Job and I ask her, and she basically said the same thing. she said I should talk to a Pulmonary Doctor. It is hard to listen to him beg for just a breath of air. He is on 65 percent oxygen now. His co2 went from 117 to in the 90s. So it came down a little during the night. (The Nurse just said it was in the 90s.)
We are supposed to leave in the morning for St.Louis so Pray that nothing goes haywire and keeps us here. I'm ready for this little boy to get his new lungs and be able to breath freely. I know what that means, but so does God. He could still miraculously heal Jobs lungs and we wouldn't have to go that route. But if that is the route we are to take, then I pray for that family in their crisis
and I'll be very thankful for their decision to donate the lungs. It's sad anyway you look at it.
Well Tina is going to be here in a minute so I had better get my stuff together.
Lots of Love, Keep bombarding heaven with your prayers.
Grandma

UPDATE:
Dr. Elidemir just left and said that we are still on go for tomorrow. He increased his Adivan back to 4 times per day (at my request) and also wrote to give him an IV dose inbetween if needed. That is good, because it is so difficult when he just lays over there and begs for oxygen all the time.

Dr. Elidemir also said that Job's lungs are very sick and we must just hope that he is able to get a transplant quickly because he is running out of time. He said the transport is very risky too, and there is a chance that something could go terribly wrong in transport. Those aren't his exact words, but you get the point. He did say that there is not much else they can do on Job's vent to help him. Job just needs this transplant ASAP.

Please pray for him, PLEASE!
Tina

Sunday, May 27, 2007 7:37 AM CDT

WOW have we had a tough night. Job felt like he couldn't catch his breath all night long even though his numbers were okay. This morning his CO2 was 121. I wasn't surprised at all. Please pray that we can get his CO2 down. They have given him extra Adivan to help him relax, but he still begs for breath every time he wakes up even a little bit.

Dear Lord, please bring his CO2 down, please help him rest.

Tina

Saturday, May 26, 2007 8:16 PM CDT

Job had a good day. Didn't have much of an appetite but he did eat a little. He ate a few bites of chicken and mashed potatoes for lunch. He ate a few bites of potatoes for dinner and then had a go-gurt. His tummy was hurting a couple of different times today. Then about seven o'clock he started scratching and I asked him if he was itching enough to need Benadryl and of course he said yes. The Nurse gave him some Benadryl, so I thought now he is going to get sleepy and he hasn't had a bath yet. So I asked him if he wanted a bath and he said yes, (I was going to give him one anyway ha). So I gave him a good bath and it wasn't ten minutes until he was sound asleep. He is resting good.
He had a pretty good workout with PT today also.
He was asking me how many days until we leave for St. Louis.
Your prayer are working, no infections found, all results were negative. Your Prayers are working in so many ways. We can't see the results in all of them but God is holding Job in the plam of His hand. God is in control.
Love to all,
Grandma

UPDATE:
Please pray for John Prado. He is in great need of prayer right now. www.caringbridge.org/ar/johnathanp/

Friday, May 25, 2007 6:42 PM CDT

Quiet day today. All cultures are negative so far and retnas and kidneys tests were good. Job had good PT and has rested quietly the rest of the day. Job's CO2 is back down in the 90s, which is still high, but down from 116 and not continuing to go up.

We are on go for St. Louis on Tues. I hear that the transport has been arranged for 8:00. The most exciting thing about next week is seeing Nicole and having our family back together finally.

Tina

Thursday, May 24, 2007 4:47 PM CDT

Job is having a difficult time today. His white count is high (30,000) and so they believe he has an infection of some sort and have began antibiotics. His CO2 is 116 and his pPeak(air pressure) is really high, in the 60s. They are changing the vent to the one he was on before. They are also going to do various tests on his kidneys and retnas to identify if the aspergillus has spread. They gave him cellcept last week and it suppressed his immune system so he has a higher risk for infection and such.

Please pray that God will keep him safe and heal him from any infection that he may have obtained.

Tina

Job slept pretty good last night. it's 6:15 a.m. He likes to hold my hand while he sleeps. He had to be suctioned once they said that they got quite a bit of stuff. nothing else going on right now.
Love to all,

Grandma

Wednesday, May 23, 2007 11:48 PM CDT

I'm sitting up with Job tonight. Well, I should probably be sleeping but I am not the least bit sleepy. I was just sitting here in the dark, with the only light coming from the hallway and the light of my computer monitor. I was writing up some thank you notes to some of the staff here at Texas Children's Hospital that have touched our lives. It is kind of sad to go to St. Louis. We have really made some connections with people here. We will miss Bud, and Earl, the Zalewski's, and the Laurents'. Bill Laurents still owes Job a fishing trip so we'll definitely have to come back for that some time. We also really appreciate how much the Sagemont and the Braeswood churches reached out to us and continued to come to Job's room and pray for him.

We must now travel to a new city and meet new people. I was really hoping that we would be able to stay in Houston for the transplant, but it just wasn't meant to be. It looks like Rob will not be able to attend Nicole's 6th grade graduation afterall. If we are scheduled to transport on Tuesday and her graduation is on Thursday, we just can't see how we could get him there. The plan now is that Grandma and I will leave on Tuesday to drive home with all of our things. Rob will fly to St. Louis with Job. Grandma and I will stay home with Nicole until after her graduation and last softball game. We will then all three head to St. Louis on June 2nd. Maybe we'll think of something between now and then.

Tina

Wednesday, May 23, 2007 3:16 PM CDT

Well we're officially St. Louis bound. Since we are going into a holiday weekend, Dr. Elidimer's recommendation is that we schedule transport for Tuesday. That way we will have full staff when we get there. That gives us some time to get things arranged I guess.

Thanks for everyone's prayers.

God Bless,
Tina

Monday, May 21, 2007 5:59 PM CDT

First, let me start by saying Job had a great day. He completed an hour of physical therapy this morning and another hour this afternoon. His legs are getting stronger. He will be able to stand on his own very soon. He also wanted some Popeye's so Dad made a run. He ate some mashed potatoes and an entire chicken leg (minus the bone). He also ate a couple of popsicles earlier. He hasn't complained of being out of breath all day, not even during PT!!!

Dr. Elidemir came in around 2:00 and said that St. Louis was still getting their records together about Job and expected to hear from them by Wed. He then told me that they may have another surgeon here. A heart surgeon that has helped them with lung transplants in the past in considering the position. He is suppose to let them know his decision by Wed. If he accepts the position then they will be back up to full staff here and therefore would be able to handle Job's transplant afterall. Yes, it is crazy. It took me a minute to put the breaks on my mind. I had been thinking full speed that we were moving to St. Louis in just a few days. Now it looks like we could be staying here. WOW, things sure change fast from one day to the next.

Looks like we will continue to be in limbo until Wednesday. We did move back into the RMH yesterday. We are in room 14 this time.

Friday, May 18, 2007 8:05 PM CDT

It sounds like although we are ready to go down here, St. Louis has a few more papers to file first. It will probably be Wednesday or so before we leave. It would be nice to know a date so we could plan accordingly, but we are not going to have that lesiure. Oh well, no big deal I suppose they have plenty of hotels for us to stay somewhere once we get there. We have accumulated more than one car load of stuff while we were here so we are getting a tow ball put on our car tomorrow and then we can rent a small U-Haul trailer to help us move everything from here to there.

I think the plan is for Rob to ride in the jet with Job and Grandma and I to drive. We will probably go home first and regroup and then head up to St. Louis. I hear that Ark. Medicaid is going to pay for the transport afterall. It makes sense that they would.

Although Job was "listed" yesterday it is on hold. On hold meaning that even if lungs became available this weekend in Houston he wouldn't get them because we do not have a surgeon. But, afterall, that is the very reason we are being sent to St. Louis. He will still accumulate the time though.

Tina

Job had a good day today. He was nauseous and his tummy was hurting this morning. They gave him some Zofran and stopped his feeds. Then about thirty minutes later Physical Therapy came in and got him moving around. He almost put on his pants all by himself. He got one leg in and then Mark (PT) had to help him with the other leg, then Job had to turn from side to side tying to pull them up and raising his heiney up. It is so hard for him to do anything, he just doesn’t have enough breath or strength. You can tell on the video of him playing catch with PT that he can’t stand up yet.
He got to get out of his room and into the hall for about two hours. Physical Therapy played catch with him to exercise his arms and then had him kicking the ball to exercise his legs. They exercised him for about thirty minutes. Then he sat in the wheel chair watching every body pass by for an hour and a half. He ate a pop-scicle and a half and for supper he ate some fried chicken. He was in a good mood all day. About six o’clock he started wanting to sleep. He wanted me to set beside him and hold his hands while he slept. Mom (Tina) traded out with me about eight-thirty. Job would have still been asleep except the Nurse said that he needed suctioned. So he was sad when I left. He is always sad when we switch out no matter who’s leaving or who’s coming. But it only takes less than ten minutes for the next one to get to him and then he is fine until next time.
Well I guess I’ll sign off, take my bath, read my Bible, say my prayers, and go to bed.
Tell next time, Keep Praying, OUR GOD IS AN AWESOME GOD!!
Love, Grandma

Friday, May 18, 2007 11:42 AM CDT

Dr. Elidemir came in this morning and confirmed that everything was approved for the transfer. He said he could even send us today, but he doesn't like to send patients on Friday because the weekend doesn't carry full staff. So we will be going on Monday or Tuesday. He said he was working on getting the transport arranged.

Thanks for everyone's prayers regarding this matter. Job has been eating a small amout of food regularly for the last couple of days. For example, for a meal he will eat two cracker stackers from a lunchable. He also eats several popcicles thoughtout the day. We are really excited that he is getting his appitite back.

Tina

Thursday, May 17, 2007 1:37 PM CDT

Insurance has approved the transfer. We just need to figure out how to pay for transport. Health Advantage only pays $1,000 per year for transport. Arkansas Medicaid paid for the transport from Little Rock to Houston, but our case manager says since Arkansas is not in the equation she is unsure if Ark. Medicaid will pay for it. Please pray for transport expense to be took care of somehow. I am sure it is quite expensive. Please pray for this, but especially pray that Job will be safe and travel will be smooth and uneventful.

Tina

Thursday, May 17, 2007 1:13 PM CDT

Job is being listed for lung transplant TODAY!!!

The doctor said Job was already approved and there was no reason to wait until Monday. He is listing him today, MAY 17th.

Everything except the insurance is in place for us to go to St. Louis. Once the insurance is setup, we could leave the next day. There is no way to know how long this will take, but Dr. Elidemir hopes that it is early next week.

Tina

Thursday, May 17, 2007 10:08 AM CDT

St. Louis has agreed to accept Job as a patient. Job would be the only child of his size and blood type waiting for transplant there. The doctor is sending them his medical records today and working on getting the insurance approval. The hospital is out of our network, but so is this one. They will need to get insurance clearance before we are transported, but I don't think it will be a problem once the situation is explained.

Dr. E did say something about it could happen as early as tomorrow, but will probably be Monday or Tuesday. At first I was thinking he was referring to processing all the paperwork, but now I wonder if he was talking about Job's transport? He is coming back this afternoon and I'll ask him then.

God Bless,
Tina

Thursday, May 17, 2007 7:53 AM CDT

Job had a good night, he didn’t sleep that much but no drama.
He ate a whole lunchable. It took him three trys but he ate the whole thing. He ate two crackers each with meat and cheese at three different times during the night.
He said he was itching at 4:00 a.m. and the Nurse gave him some benadryl. He slept from then until 6:00 a.m. and he had to be suctioned. After that he went back to sleep and is still resting. No changes in meds or anything that I’m aware of.
Love,
Grandma

Wednesday, May 16, 2007 2:56 PM CDT

Dr. Elidemir, our transplant doctor just left. There is a situation here with the hospital staff that has caused the odds of Job receiving a donor lung from the area to grow dramatically. With all that has happened with Job over the past week, Dr. Elidemir recommends that we pursue a transfer to St. Louis. He believes that Job is in too critical of a situation to wait for a long period of time for transplant. Of course, with that said, it is all in God's hands. Who knows when a donor lung will become available and where. However, as we have continued to pray that Job's doctors are given the wisdom to handle Job's case, we must believe that he has done just that. I asked him if that was what he was recommending, that we transfer to St. Louis and he hesitated and said, "if it were my son, I would."

He is contacting St. Louis and finding out some key facts and will meet with us on Friday to discuss his findings. Some questions he will be asking are: (1) how many kids in Job's category are currently listed, (2) what is estimated wait time for Job, and (3) would they accept Job as a patient.

The whole process will probably take a few weeks. In any case, they plan to list him for transplant on Monday (May 21st) and any time accumulated with transfer with him. Meaning if he is listed for one month when we transfer, he will still have one month under his belt in St. Louis. Kids under 12 are transplanted on a first listed, first serve basis.

Tina

Wednesday, May 16, 2007 7:03 AM CDT

Things are going okay here. Job had a pretty calm day yesterday and didn't have much trouble with anxiety. We still haven't talked to the transplant doctors since last week. They usually have their meeting on Wed. so maybe we'll hear something from them this afternoon or tomorrow.

Job ate a popsicle and a half this morning. He is still on 25 breaths per minute, but he's finally back down to 50% oxygen. He was on 60% just about all weekend. He's also off the continuous Albuteral, he gets it every two hours now.

That's about all the news I have.

God Bless,
Tina

Monday, May 14, 2007 1:41 PM CDT

They believe the decrease in Prednisone was the major player in the events of the weekend. On Friday they dropped his Prednisone from 10 mg twice a day to 10 mg once per day. I have noticed before that he struggles more with prednisone is skipped rather than decreased.

Job doing okay today. He is still on continuous Albuteral, but hopefull that will be dropped down to every two hours soon. The biopsy is probably not going to happen. The pulmonary doctor said the reason for it was to determine whether or not we should list him for transplant now or wait. He said the fact is, Job needs a transplant and they do not need a biopsy to tell them that.

So two major question remain for the doctors making the decision on listing him for transplant: (1) Is he physically strong enough to handle the surgery and recovery? (2) How much Prednisone is too high for transplant?

Those mountains don't seem too high to cross with prayer, patience, and hard work we can SLOWLY wean the Prednisone down and focus on PT. Because of the events that happened over, they had to increase his steriods. We will restart the weaning process in a few days.

Tina

Monday, May 14, 2007 1:10 AM CDT

Well today was rough. He was so anxious and scared. Wanting me to give him a breath. But they had told me that every time you give him a 2 minute breath of 100 percent oxygen (this won't let me put a percent sign there) it just prolongs his agony because it makes his lungs lazy and causes his co2 to go up. I don’t know the whole medical explanation for it but his lungs wasn’t getting rid of the carbon dioxide. So then he would hyperventilate.
His co2 was 123 this morning, then 107, 95 until 11:00 p.m. it was down to 75.
At 10:30 this morning when his co2 was 123 he was very anxious and feeling like he wasn’t getting enough oxygen so they finally gave him some adivan, then again at 12:30 in the afternoon. By 3:00 p.m. he was crying and so scared and shaking and begging me to just give him a breath. I asked the Nurse if she could give him something to relax him and she said that she had gave him adivan at 10:30 and again at 12:30. I said, “well obviously it isn’t working he needs something now”. She went and talked to the Doctor. Then the Doctor came in and by the time she came in I was crying too. But she did tell the Nurse to give him a triple dose of adivan. He rested well for several hours. And his blood gas started coming down. Last account at 11:00 p.m. his co2 was at 75. Praise the Lord. They took two x-rays and said they looked good, then she said well there wasn’t anything new.
We successfully moved out of the RMH and into a motel/hotel. A week to ten days we can move back in I think. I would hate to have to move every forty-five days for the rest of my life. I did enough moving while I was growing up. We moved all over the U.S. slept in the desert with the Gila monsters, looking up at the stars. Feeling the ground shake when a semi would pass by. Ahh the good ole days. Ha
Well I told Job that I would not even try to sleep, that I would watch over him, But hopefully all of you are getting a good nights sleep. I hope you wake up refreshed. I’ll get some sleep when we switch out in the morning.
Love to all, and thank you, thank you, THANK YOU for all of your prayers. Not only for Job but for Nicole also, and the rest of the family.
Goodnight,
Grandma
p.s. Well it is 4:40 a.m. and Job has rested very well. They are sticking him right now to get blood. They haven’t been able to get blood from his port for some reason. Today they are going to get someone from ongology to re-access it. They got the blood without any trouble or any sound from Job and his eyes are closed once again. I am so glad he is getting a good night sleep. Well so much for closing his eyes it is time for vital statistics.
Now the shrill sound of the machines going off. Oh well twenty minutes of simple stuff and off to sleep again. Halleluia!

Sunday, May 13, 2007 0:33 AM CDT

Dry air causes secretions to thicken and harden. Job's vent is humidified to prevent this from happening. Another thought on the cause of his problems is that his vent was not humidifing the air properly. Remember, he switched to a different vent a few days ago. Maybe it didn't have anything to do with the trach, maybe it was the humidification process that wasn't working properly.

Rob said that he really felt bad. He said that Job asked for breaths all night and he refused him as long as his oxygen numbers were above 92. He said that he apologized to Job and from now on he doesn't care what the machines say, if Job needs a breath then he will give it to him. We had previously thought that he was just getting adicted to the 100% oxygen breaths. You see, there is a button on his vent that will give him 100% oxygen for two minutes. The doctors and respiratory therapists told us to refuse him these breaths and to teach him how to calm himself back down when he gets anxious. They even sent a psychologist to talk to him. Rob is very frustrated, because it is apparent that Job knows when he is not breathing properly and needs more air. Yes, he was getting plenty of oxygen, but he wasn't filtering it properly in his lungs and thus he was asking for breaths.

A few minutes ago, the RT finished Job's treatment and turned him down from 60% oxygen to 50%. Just a few minutes after she left, he started telling me that he was having trouble and that he needed a breath. I looked up at his monitor and his pulse-ox said 100%. I told him that he was at 100 and he still said that he needed a breath. Thinking about everything that Rob had said and that had happened today, I immediately went and got the RT. She suctioned him, talked with his nurse, and turned him back up to 60%. After she left, the nurse said they just need to leave him at 60% until after they see how his blood gases are doing. He is resting comfortably at 60% and it doesn't hurt him to just stay at that level for a while.

Tina

Saturday, May 12, 2007 8:09 PM CDT

Job had a very difficult day today. They switched him to a whole Clonidine patch. His anxiety continued to increase and his breathing was out of whack. They checked his arterial CO2 and it was 120 (normal is 35-45; Job's is usually in the 70s). They increased is vent to 20 respirations per minute and put him on continual albuteral. They were prepared to send him to PICU if they were unable to get the CO2 down quickly. They changed his trach out and there were a lot of secretions on it. Two hours later his CO2 was 100. Two hours after that his CO2 was 90 so the trach seems to be the source of the problem. He is resting now and off the continual albuteral, down to every two hours.

I didn't know high CO2 caused anxiety. I just thought it was due to his weaning of his meds. However, we haven't weaned anything in a while either and he did even have a delusion yesterday so I should have thought something else was going on. Rob and I changed his trach on Thursday and we probably caused all of this. We had never even seen it done before and they made us do it.

Tina

Saturday, May 12, 2007 10:01 AM CDT

Everything is still about the same. Job is anxious most of the time, but has times of rest and peacefulness. He is learning how to work through the nervous spells on his own with desating (running out of O2). He is getting a lot better at calming himself down with our help. He talked with a psychologist on Friday that worked with him on his breathing.

We are moving out of the Ronald McDonald House on Sunday. We will be staying at the Residence Inn for our 7+ days out. We did find that we cannot sign back up on the RMH waiting list until our 7 days are up. Then the average wait time is 1-2 days. Therefore we are expecting to be out for 7-9 days. I wish Nicole and Gracy could be here with us for this week since, but she has to stay and finish school. Only two and a half weeks left. YIPEE!!

The Lord has blessed us with a great gift from the friends here that He has sent to us. They are purchasing our plane tickets to fly home for Nicole's sixth grade graduation. We will be departing on May 30th and returning on June 1st. I praise the Lord for this wonderful gift.

I also wanted to mention that a few days ago when Job was having such a difficult time with fear, Job asked Grandma and I to pray for him. After that the Lord sent two different people to his bedside to lay hands on him and pray for him. I really thought that was terrific.

God Bless,
Tina

Friday, May 11, 2007 6:41 AM CDT

Yesterday was a busy day. Dad, Mom, and I had to go to a C.P.R. class and then to a Trach care class. Mom and Dad had to take the trach out of Job and insert another one.
Of course it was no fun for Job for his trach to be taken out and replaced twice. But Mom was the one that groaned when SHE inserted the trach. It doesn’t hurt Job but it makes him gag and cough.
When I came back at eight o’clock there were four or five fire trucks blocking the entrance to the hospital. Rob had to find me on the street and we switched out there at a red light. I hurried to Job because I didn’t want them to lock me out. Job was asleep when I got here.
We had quite a thunderstorm here last night. I had to close the blinds so Job wouldn’t see the lightning display. I turned his music up to drown out the thunder.
He slept well for about two hours after I got here. When he woke up he was okay until about 10:50 p.m. then, he started getting scared and anxious and restless. Then his oxygen level dropped into the eighties. I called respiratory and she gave him a boost of oxygen. I asked the Nurse when his next Adivan was and she said not until midnight and the earliest she could give it would be 11:20. That was thirty minutes away and he was shaking and starting to cry. She waited ten minutes and came back in and gave it to him. It still took another ten minutes to get to him through the tubing. He kept destating so the respiratory therapist bumped his oxygen up from 40% to 50%. After he calmed down we gave him a bath. He slept well from about 2:00 a.m. until 5:00 a.m. and he had to pee-pee. Since then it has been one thing after another. They turned his oxygen back down to 40% and he keeps destating (his oxygen dropping until the alarms start going off and then Job get anxious). So now they bumped it back up to 50%. He is itching so he has requested benadryl.
He is resting this minute, or should I say second.
Mama should be here by 8:00 a.m. and I bet that she won’t be late. The air-conditioning is out at the RMH. It is nice and cool in here. She will probably try to get a few winks in here. Ha. She should because I think Job will sleep as well today as he did last night.
I hope everybody is doing well. Keep praying for this miracle. That Job is healed and won’t need a transplant.
Love to all in Christ,
Grandma

Thursday, May 10, 2007 0:06 AM CDT

Today was better for Job. He was not near as anxious and was even able to get out of the room a little. We had planned a trip up and down the hall, but the RT didn’t like the setup for the portable vent and didn’t want to take a chance at getting out there and having Job get into trouble. However, she was determined to not let Job down. So she managed to get his room vent into the hallway with him in a wheelchair and a bedside table for his monitors. It was quite a task just getting past the threshold of the door, but we done it. Thankfully our room is on the corner, so once we were in the hall, he could see down two corridors. He had his physical therapy out in the hall. I placed a video of him standing and playing catch on his video website below. At first he has a wet washcloth on his head because he was hot. It falls off when he stands up. I also filmed his Victory Dance that he does after every physical therapy session.

I hope these videos work for you all. I do not have my home computer that has all of my video software on it so I am very limited to what I can do.

The doctors have decided that it is in Job’s best interest to go ahead and do a lung biopsy. It is a very risky procedure, but they believe it is necessary to decide how to go forward with Job’s treatment. They will do it in the next few days and he will probably be back in PICU for a few days after. If the biopsy shows that Jobs problem is his underlying disease (BO) then his lungs will never improve and they will go ahead and list him for transplant. If the biopsy shows that his problem is mostly inflammation and other things that he could recover from, then we will wait for transplant and proceed with various treatments to help him improve. They still believe Job will ultimately need the transplant, but they want to wait as long as possible before going forward with it. It is a very dangerous procedure.

Tina

Tuesday, May 8, 2007 11:52 AM CDT

Okay, nothing really went according to plan. He was so anxious during the night that his blood gases were out of whack from the get-go. They did put him on C-PAP but decided today wasn't a good day for the oxygen only trial. They did deflate the cuff of his trach. The cuff of his trach is what blocks the air from coming up through his vocal cords and then through his mouth. They wanted to see how he handled the cuff being deflated before trying anything else.

The Clonidine patch has been a topic of debate. Rob and I were convinced that it was one of the main things that was keeping him so sedated and depressed. It came off Thursday night while Rob was on duty and he didn't mention it to the staff. He had a few episodes of anxitity over the weekend, but also had moments of joy. He laughed on Sunday for the first time since all of this began. We thought we had made it through. I mentioned it to the doctor yesterday morning and said that we didn't want it added back if possible. They didn't even know that it had came off until I told them. ANYWAY, with all the drama of the night and morning we added a half a patch back. I hate for him to be sleepy all the time, but I hate even more for him to be scared all the time.

Tina

Tuesday, May 8, 2007 7:22 AM CDT

The past twelve hours have been tough. Job has been very scared and anxious. It is the detox that is so tough. He is down to .5 on Adivan and he didn’t like that at all. We had to give him two extra doses last night to get him through. They are planning to try him on oxygen only today (no vent or C-PAP) for an hour. The plan is to have him on C-PAP for an hour, check his blood gas, then put him on oxygen only for an hour and check his blood gas again. The hope is that if his gas doesn’t change dramatically then he may be able to come off the vent for short periods of time to be more mobile. It will allow him to get out of the room for a little while. Just think, he has been in hospital room for almost 3 months now. It would be good to be able to go outside for a minute. They will probably do this test a few times before they feel confident enough to let him leave his room, but it is the first step.

I just wish he wasn’t struggling with detox so much. We may have to wait until he is completely off of Adivan before we can see where we really are with him.

Tina

Monday, May 7, 2007 1:07 PM CDT

JOB IS OFF METHADONE!!! He went all day yesterday without any and is doing fine. We are getting really close to coming off the Adivan also. We had a real good visit with the Rappolds over the weekend. It was nice to hang out with some friends. We played Spades Saturday night and of course the Florence and I won every game. HA!

Job is spending 10 hours per day on C-PAP and is doing pretty good on that. He still gets tired really easy and does get out of breath when he exercises. He is getting stronger and stronger. He really beats up on the OT guys. He still cannot stand by himself, but we're working on those leg muscles.

Thanks for all your continued prayers and love.

Tina

Sunday, May 6, 2007 8:41 AM CDT

Job had a good night. He rested well.
Florence had brought him an awesome gospel CD. I picked some favorites out an added it to his music list. He listened to his music all night. At one time I looked over there and he was wiggling, I thought he was needing something but when I saw his face he had his dance face on dancing away. I told him it made me want to shout hallelujah. If you don’t know he has been kind of down for awhile. I guess the visit from the mighty Rappolds & his sister Nicole perked him right up. Nothing like a few down-home faces to bring the spirit up.
At 10:30 they are going to bring him REAL FOOD and see how he does on it.
Well Mom and Nicole are here so I’m going to sign off.
What an awasome God we serve. Thanks for all of the post on the guestbook and for every prayer.
Love Forever,
Grandma

Saturday, May 5, 2007 2:51 PM CDT

Occupational Therapy came today and gave Job a swallow test and he passed with flying colors. So he is now cleared to eat solid foods. We just have to pray for his appetite to return.

Andy and Kyle Rappold hung out with Job and Dad at the hospital today. Florence and I just traded out with them. Rob and Andy are taking the rest of the kids swimming for a couple of hours.

Tina

Saturday, May 5, 2007 8:00 AM CDT

Job had a good night. Other than alarms going off because of “leads” coming unstuck, or just because the “leads” didn’t like the way Job was breathing.

He had company before bedtime. Andy, Florence, Andrea, Lyndsay, & Kyle Rappold. Nicole was with them also. He was glad to see them. They will be back today. Maybe Kyle will play a game with him.

Well Rob is on his way to get me so I guess I’ll hush and get this posted.
Love to All,
Grandma

Friday, May 4, 2007 9:17 AM CDT

We have a Total Care bed ordered for Job. They have already brought him a special pillow to help with the pressure points. I have also asked the PCU doctor about getting him off the pureed diet and on some regular food. She is going to check with pulmonary first, but she doesn’t see why it would be a problem.

Job is still very sleepy most of the time and very depressed. He misses all his friends so much. I have an idea I hope you all can help me with. I know that we are very far away and it is not possible for our Bigelow friends to visit us, but there is an alternative that I thought of for Job. I am asking this especially of his classmates, teachers, and church family. Please make Job a video and send it to him. He has a VCR in his room or if your high tech enough, you can send an MPEG to my email address. It doesn’t have to be very long, just a video message to Job. The funnier the video is the better. Just grab you video camera, film a short message to Job, put it on a VHS tape and drop it in the mail. Hopefully that is not too much trouble. I know that he would enjoy seeing everyone’s faces. You can send it directly to Job’s hospital room at TCH (the address at the bottom).

We only have one more week to stay at the RMH before we are forced to move out for at least 7 days. Please, if you mail anything to RMH address, be sure to put our full name on any mail you send. That way, even if we are no longer in room 28, we will be able to stop by and get our mail. We also will probably not be in room 28 when we move back in. I really would like to find some other place to stay. Somewhere that allows pets so we can have Nicole and Gracy here with us this summer. Also, where we could have a kitchen in our room and not have to move out every 45 days. I don’t know if there is such a place that is as reasonably priced as RMH, but I am going to look.

Job just finished his morning exercises, and he is bushed. He done really well and is getting stronger, but I don’t really think he realizes it.

Tina

Thursday, May 3, 2007 4:11 PM CDT

Hey Everybody,
Job has done well today. He had his exercise at 11:00 a.m. and again at 1:30 p.m.
He does them about fifteen minutes each time.
I’m supposed to do some with him about 6:00 p.m.

He has been on C-Pap since 8:00 a.m. they said they are going to leave him on it for eight hours today. It is now 4:10 p.m. and they are taking him off of it. 8 hours that is great.

Not much going on today. Pretty quiet here.
Tina and Rob were going bike riding this afternoon. I wonder if they did. I looked out awhile ago and it was raining big time. Well I called Tina and she said that they had just pulled into the RMH when the bottom fell out. Ha

I was telling someone about Nicole and I looked down and Job’s little ole bottom lip was quivering. He misses her so much. I had to tell him that it won’t be long until she will be back.

Job has bruises on both hips and his tail bone. Please Pray that these won't turn into pressure sores. He has a sore on the back of his head already. It is healing but please pray for continued healing and that the other bruises won't turn into sores. He can't lay on his back or either side without there being a chance of it getting worse.

Well I guess I’ll put this on the Journal.
Love to all. Every Post Blesses our Hearts.
Grandma

Wednesday, May 2, 2007 12:51 AM CDT

HAPPY Birthday Job!!!

Tuesday, May 1, 2007 2:46 PM CDT

I hope you all enjoy the photo links. This will be a way I can share more than three photos at a time.

Thanks for all the birthday wishes for Rob and Job. Rob and I are going out to dinner tonight to celebrate his last thirtysomething birthday while Grandma sits with Job.

Job had a CT scan today, other than that everything is the same.

God Bless,
Tina

Monday, April 30, 2007 7:35 PM CDT

Nicole went home today. Job cried and cried.

The doctors say that Job is doing good. They have decreased his prednisone to 15mg four times a day and tomorrow it drops down to twice a day. He is doing so well on C-PAP that tonight they increased his evening round to 4 hours. He is continuing to work with the physical therapist teams and getting a little stronger each day. He has been playing his Pokemon Diamond game and likes it very much.

We are getting close to the end of the weaning of the sedation meds. We are down to 2.5 on Adivan and 1.75 on Methadone decreasing both at .75 on alternative days. One day they decrease Adivan and the next they decrease Methadone.

We don't see a big change in alertness and energy from one day to the next, but when you compare how he is today to how he was last week or two weeks ago, that's when you really see the difference.

Thanks be to God for the wonderful work He is doing in Job's body. I also praise the Lord for putting it on so many people's hearts to love us and care for us. It is really overwhelming that people will go so much out of there way for us.

God bless,
Tina

Sunday, April 29, 2007 3:47 PM CDT

This Morning Jobs attitude was better than yesterday. Yesterday he seemed a little bit depressed.
This morning he asked to sit in the chair. He also wanted to put his feet in the water. He sat in the chair for an hour and fifteen minutes. He went through three tubs of hot water, as they would get cold he would have me change them. After the third one I said we had better wait or his feet would look like prunes.
The Physical Therapy girls came in while he was in the chair and they liked that. They done his exersises and then got him back into bed.
He rested for a little while until Mom, Dad & Nicole got here from Church. We then had him a Birthday Party. His Birthday is the 2nd but we wanted to have a party while Nicole was here. He was happy about it all but he was thrilled about the game (Pokemon Diamond)& the strategy guide for it.
Nicole then told him about her winning a Wii. She told him what Andy had done. His mouth fell open and he was speechless. ha
I relieved Dad this morning. I had said that I would stay morning and night Sunday so that they could go as a family to church. I took Tina's place this morning so that she could go to this hair and make-up party with Nicole (at three-thirty)and then they are going to have a prom. The Party is over at nine though. Anyway somehow Rob is staying until we get Nicole off at the airport. Then Tina will relieve him at eight tomorrow evening.
Love to all,
Grandma

Friday, April 27, 2007 9:45 PM CDT

Job had another good day today. Job, Rob, and Nicole hung out this morning. Grandma and I picked Nicole up around 2:00 and went shopping for Nicole an outfit for graduation (6th grade) and Job some birthday presents. Job's birthday is Wed. (May 2nd). He will be 9 years old. We bought him the Pokemon Diamond game and strategy guide. Grandma bought him a remote control motorcycle. He also has some Pirates of the Caribbean toys that Aunt Tammy sent him. We are going to celebrate his birthday on Sunday since Nicole will be here. I hope the doctor clears Job to eat a piece of birthday cake although we could always have an ice cream cake.

Job and Nicole’s school, Anne Watson Elementary, had their Spring Fling tonight. Andy Rappold had bought some raffle tickets in Job and Nicole’s names and they ended up winning a Wii. Can you believe it! Nicole was so excited. Job still doesn’t know. I think we’re going to just wait until it gets here and let him open it up. He will understand that it is both his and Nicole’s. They are really good about sharing stuff like that. Especially after he finds out that it was actually Nicole’s name that was drawn. A Wii is what Job really wanted for Christmas this past year.

The phone in the hospital room is not functioning properly. It will not ring. I have asked the nurse about getting us another one and she is checking on it. So if you have tried to call and couldn’t get anyone to answer, then that is way. Sorry if anyone missed us due to the malfunctioning phone. Hopefully we will get a new one soon.

Grandma has day shift tomorrow, so I believe Rob and I are going to take Nicole to the zoo. We just realized that the RMH is right across the street from a nice park and the Houston Zoo. Sunday afternoon/night the RMH is having a prom for kids 11 and up. Nicole will be able to wear her graduation outfit Sunday to the RMH prom. The RMH will be doing the girls hair and make-up and photos before the party at 7:00. I’m sure it will be a lot of fun.

Tina

The Phone Works Now Grandma

Thursday, April 26, 2007 9:54 PM CDT

Mom and Nicole stayed with Job today. Mom said Nicole was on the computer so she didn’t get to update the website. It has sure been a pleasure to have Nicole up here or down here. Job was very happy to see her. He hugged her around the neck and didn’t want to let go. She was very happy to see him also. She had seen him since he has been down here but he was still knocked out, so he didn’t know it, and she didn’t get a hug.
Mom said Job was on C-Pap for 3 hours this morning and on it again this evening for 4 hours.
He played his game cube for about an hour today.
Right now they are giving him a bath and changing his bed.
He’s always wanting to give the Nurses hugs.
Well I didn’t get a lot of information from Mom, so I’ll update again in the morning.

But Praise the Lord we don’t have a lot of DRAMA to have to write about.
We praise God for every little baby step we can get going forward.
We have to trust God if we have to take any steps backwards, but
PRAISE BE TO GOD we haven’t had any steps backwards since the Prednisone caper.
Thanks to everyone for the Love, Prayers, & Support. You are totally awesome.
You will never know how much it blesses us to read your post and feel your Love.
And the financial support from donations and fundraisers and all the work it takes for something like that. It is truly amazing. I don’t know what we would have done. It is very humbling to be in this position. But then again it puts you in a position to see the wonderful side of humanity. You are greatly appreciated, May God Richly Bless each and every one of you. We could never repay you for the love or the support if we had fifteen lifetimes to do it in.
Love, and admiration to you all.
Grandma (CHECK OUT THE NEW PHOTOS)


Not much happened last night so I'll just add a little here.
He slept well almost all night. Woke up at 3:30 a.m. wanting to play Game Cube but I told him to wait until morning. He went back to sleep and woke up at 6:50 so I let him start playing his game.
Dad will relieve me at 8:00 a.m.
Until next time,
Grandma

Wednesday, April 25, 2007 5:52 PM CDT

Today he sat in a chair twice an hour each. Once at noon and then again at 3:30p.m.
He got his exercises and after he got back in bed it was off to dream land again.
He had some visitors today a very nice couple Bill and Linda Laurents. I was glad that Job woke up and interacted with them. They are friends with Craig Johnston that came by to see Job the other day. It is nice to get visitors. Craig actually came to see us when we were in PICU and for some reason they said we weren’t having visitors. They must have gotten Job and another patient mixed up.
Job took 4 small bites of food at dinner. Not much of an appetite.
I wish he would eat more and regain his strength. But that will come in time. His taste is messed up because of the high doses of Prednisone I think.
I am fixing to be relieved, Tina, Rob, and Nicole have made it back to Houston. I had better get my things together.
Love to all,
Grandma

Wednesday, April 25, 2007 8:52 AM CDT

Not much out of the ordinary last night. He slept a little but I think he has his days and nights mixed up. He watched TV, Listened to his music, and wanted warm water for his feet. I told him the warm water was a daytime thing. He pooched his lips like he was gonning to beg and looked at me with puppy-dog eyes. And of course Grandma caved and said okay. I said you have Grandma wrapped around your little finger don’t you. He smiled and shook his head yes. But then he changed his mind about the water and wanted me to lie down by him. I said I couldn’t but I let the side rail down on his bed and lean over & held him while he went to sleep.
This morning early it was lightning and he wanted me to let the blinds down on the windows. He said he was scared, I told him, “Don’t be afraid. Do you know what God told me” God said, “Don’t look at the storm child the waves or the sea, put your trust in me child just focus on me.” He smiled and went back to sleep.
Well Mama Eagle and Papa Eagle has Baby Bird and on their way back to the nest.
( ie. Tina and Rob have picked up Nicole and are on their way back to the Ronald McDonald House)
Job is on C-Pap (for 4 hours) already this morning. He will be off of it at 12:30 p.m.
Well I’ll post more this evening. Love to all.
Grandma

Tuesday, April 24, 2007 4:20 PM CDT

9:25 until 10:35. Job set up in the chair for an hour this morning.
Mom and Dad left this morning to pick up Nicole. She called last night and was a very sad little girl that misses her family. I just pray that their little family all gets back together soon including the dog.
11:00 until 11:30 or 11:40 He sat up about thirty or forty minutes with Physical Therapist. He took three steps. hooray!
He is now doing a puzzle with PT. She said she needed a harder puzzle because he finished it in five minutes. He also had another foot washing. She turned it into an exercise. Made him pick up little do-dads out of the water with his toes.
He is on C-Pap (11:00 a.m. until 1:45 p.m.).
The Doctor said they were going to go every 4 hours with the breathing treatment that breaks up all of that stuff. They are changing Adivan to every 8 hours.
11:55 until He is sleeping. He is awake 2:30 p.m.
2:30 – 3:00 PT and another puzzle.
3:00 - ?? p.m. He is watching Pokemon.
Love to all,
Grandma

Monday, April 23, 2007 5:44 PM CDT

Today has been a good day. Job spent two hours sitting in a chair. He stood two or three times for a couple of minutes each time. He is now on C-PAP for three hours. It's been about an hour and a half and he is doing wonderful.

Tina

Monday, April 23, 2007 7:50 AM CDT

Well Job had a pretty good night. Except for the gagging/coughing so he kept having to be suctioned. He slept most of the early night (10:00 p.m. until 3:00 a.m.).
but from 3:00 a.m. until 7:30 a.m. it has been gagging, coughing and suctioning.
He did have some silliness in there too. Dancing (wiggleing his shoulders, shaking his booty, and pooching his lips out). lol
This morning he was asking where his Mama was. I told him she would be relieving me around 8:00 a.m.
He has talked the nurse into giving him a warm bath this morning. He likes putting his feet in the water.
He said he misses everyone from back home. He misses Kyle, Bradley, Trey, Coty and others. I can't remember who all he said or in what order. I do know he said he really misses his sister Nicole and Gracy.
Love to all,
Grandma

Saturday, April 21, 2007 9:39 PM CDT

Job looked the better tonight than I have seen him in months. Grandma had sat with him this afternoon while Rob and I hung out together. When I came in to tag out with Grandma, his eyes were bright and he smiled a good Job smile a few times. He just look like himself for the first time in a while. It was good to see. He is resting now and a little itchy, we have some Benadryl ordered. Yup, Dr. Saylors, he still has that monkey on his back. He knows how good Benadryl works for itches.

His vent is still at the same settings since they increased them yesterday, but he still had his one hour today on C-PAP and it went wonderfully.

Thanks for all your prayers. They sure help so much. Please remember Florence's nephew Jayden Berry, they are thinking he may have a brain tumor. He is two and a half.

Tina

Saturday, April 21, 2007 11:04 AM CDT

Hello to all – things are on the improve once again. After losing some ground due to some med tinkering, Job is feeling better. I had a talk with a practitioner this morning expressing our frustration on losing a day or more in regards to Job’s condition and vent settings being increased due to this tinkering. In the future I communicated that we wanted to be made aware of any and all changes in Job’s orders so that these set backs can possibly be avoided. The doctor apologized for the honest mistake and communication between us will be improved. God makes it all for the better.
Job slept well last night and is playful today, cuttin’ up with Dad some. Our lovin’ and carin’ family back home are having a fundraiser for us today at the church. Thanks to all of you for helping us during this season of our lives. Anne Watson Elementary students and teachers sent us proceeds from a fundraiser they had as well. I am amazed and awed at all the help we are receiving. How can I possibly ever repay the love and support that you all have bestowed on my family. Know this, I can’t express enough the many thanks we owe. Hope to be home soon.

Rob

Friday, April 20, 2007 6:13 PM CDT

Check out the NEW PHOTO of Job sitting in the chair yesterday.

Job is doing better this afternoon. Still not as good as yesterday, but a lot better than this morning. The Dr. said they weren't going to make any more changes today and just let him rest. He did sit up in bed for about 15 minutes and even played one hand of UNO with me.

I forgot to mention this earlier, but on top of everything else he has Thrush in his mouth. It is caused by all of the antibiotics and Prednisone. It isn't anything to be concerned about, just more misery for Job. They are giving him medicine for it four times per day.

Grandma and I tried a pureed dinner roll, pureed spaghetti, and pureed pepperoni pizza. NO WONDER JOB HAS LOST HIS APPETTITE! HA! You try taking your favorite dinner and put it in a blender, You'll love it. LOL. Rob will actually eat some of the stuff. Can you believe it.

Tina

Friday, April 20, 2007 12:18 AM CDT

Job has had a very difficult morning. He has had a lot of trouble breathing today. We have increased his O2 to 40% and his respirations per minute to 15. They also gave him an additional dose of Adivan. After all of this he was still having trouble. They gave him additional breathing treatments and inflated the trach cuff more. While talking with the doctors, I found that he had stopped his Prednisone. I explained to them that they could not just stop his Prednisone. The resident that made the order was under the impression that he had been getting 25mg 4x/day (100mg/day) for only a week or so. I told them that he has been on Prednisone for 5 years and on 100mg/day for about two months now. Come to find out he had missed the last three doses and was due for the fourth.

I am VERY frustrated that they would just stop it like that. I wish they would tell me when they make drastic changes to his meds. They have started his Prednisone back. They are giving the first dose through his IV and then orally after that.

He had such a great day yesterday, I hate that this happened. Please pray that he will be okay and continue to improve. Hopefully it was only the Prednisone that caused all the drama today.

Tina

Friday, April 20, 2007 8:19 AM CDT

Job sat in a chair for an hour yesterday evening while he ate a Go-Gurt. He ate the whole thing too. He tried to stand up, but his legs are like Jell-o and weren't able to hold up the weight of his body. He'll have to strengthen up those legs first. He also spent another successful hour on C-PAP. His Pulse-Ox never dropped below 96. Isn't that great!

God Bless,
Tina

Thursday, April 19, 2007 12:25 AM CDT

Okay, here's the scoop. Job has been approved for transplant, BUT NOT LISTED. They still have hope that he can get better on his own. They are going to continue to wean him off the vent over the next two weeks, at that time they will have a better idea if he can come off the vent on his own or not. If he is unable to come off the vent, then they will list him for transplant. The reason for us to be patient and not rush a transplant is due to the risks involved. Below are the lung transplant statistics:

80% chance of surviving the 1st year
50% chance of surviving 5 years
30% chance of surviving 10 years

Your see, it is almost like a time clock begins to count down once the transplant is done. The idea is that the longer we can put off the transplant the longer we can put off beginning this clock. If he could survive another couple of years prior to transplant, that would allow another couple of years before the clock begins to tick and it also allows for more advances in medicine. Just like lung transplants are more successful today, than they were 5 years ago, they will be even more successful 5 years from now.

Of course, ideally, our ultimate prayer is for him to live a full life without ever having the transplant, but that would take an intervention from God. I know God could do it if He chose to, but from a medical standpoint, we expect him to need a transplant at some point in the future. The longer we can put it off the better.

Job sat up on the edge of his bed for 10 minutes today with the PT. He also watched about 20 minutes of TV last night and about an hour this morning. He has lost his appetite and hardly eats anything and he still cannot talk. He has voiced a couple of words, but it is difficult for him. Hopefully he will continue to have more awake times and continue to improve. They are planning to put him on C-PAP for an hour again today.

God Bless,
Tina

Wednesday, April 18, 2007 12:46 AM CDT

The CT of his brain looked fine and so does all of his other tests. He is still resting. He sat up on the side of the bed for three minutes today even though he was VERY sleepy. Yesterday he spent one hour on C-PAP and done great. It is similar to BIPAP, but gives a constant flow of air rather than bursts of air (I think). His vent setting are really low. He is still at a PEEP of 6, but respirations per minute are only at 10 and 35% oxygen. They tried him at 30% oxygen yesterday, but he didn't like it very much so they changed it back.

There is still some talk about whether or not Job will just continue to get better on his own without a transplant. He is gradually getting better and better, ever so slowly. We just don't know how much permanent damage was done by the Aspergillus and the prolonged ventilation. The trach has helped us get through this detox phase with the breathing support that he needed. Hopefully soon he will be completely off the methadone and adavan.

Tina

Wednesday, April 18, 2007 10:33 AM CDT

Job has been having some memory problems this morning. At one point in time he did not know his name nor who his dad was. He didn't know where he was from or anything. He said some crazy things too, like his name was Spryo and he wanted to go to Alabama to fight dragons. It's kind of funny, but also really scary. They took him down this morning for a CT of his brain to see if something was going on. He's finally resting now.

It's probably just related to the withdrawal issues from coming off the junk. Currently he is getting Methadone twice a day and Adavan twice a day.

Tina

Tuesday, April 17, 2007 6:32 PM CDT

Sorry to be so late updating the journal.
Last night went pretty well. He slept pretty good.
At about 4:30 or 5:30 this morning I had a Carman Praise and Worship CD playing. Job was laying slightly on his left side, with his left hand up by his ear palm up. Then his right hand went straight up in the air, I thought he wanted something so I got up and went over to him. As I got to him I felt strongly "don't touch him". So I watched him. Then I started to take a picture of him, again I strongly felt not to because it would disturb him. He held his hand up in the air for a full minute or more. Then it brought it down and tucked it under the covers. He never once opened his eyes. It isn't easy for Job to hold his hand straight up in the air for a full minute as weak as he is. He can hardly hold a spoon or hold his arm out for five seconds. If you didn't read my post today about the one I posted five years ago you need to read it. GOD IS TRUELY WITH THIS BOY. Sick as can be and praising God and singing Praises. I am truly inspired.
Praise God, Praise God, Praise God He does have Job in the palm of his hand.
Love to all, Grandma

Sunday, April 15, 2007 11:55 PM CDT