History

March 19, 2006 7:30 PM CST

Where does a year go?? For that matter ...where do three years go?! It is hard to believe our little boy would be 3 years old this week. I have been anxious about the coming of his birthday and the number of anniversary days that will soon follow.

I have posted a few pictures from his other birthday celebrations. I remember the night that I arrived home with him from New York. It was the night before his first birthday. I had been in NY the week before, going to all his doctor appointments, collecting all his medical information and learning how to administer all his medications and shots. Mike had flown out (in a terrible snow storm) to meet us in NY to sign the papers the day we got him. We stayed in a hotel that night at the airport... the three of us together. Early the next morning Mike flew back to Wisconsin, and Joshua and I headed to my sister Lynn's to meet Papa and Granny, who had come up from Florida in their motorhome - which was to be his "carriage" ride home to Wisconsin. It took two days to make the trip, but he was such a good boy. The night on the road, we stayed at a Walmart parking lot. We made him a cozy little bed in the bathtub of the motorhome. We drove all the next day, getting stuck for a number of hours in the Chicago traffic. We arrived at home after dark.

Mike and the kids were patiently waiting inside with Grandma and Grandpa Kasun to welcome home their little brother. They made dinner, decorations and birthday cake. Bryan had made confetti which he hung above the door and hooked a string so when we opened the door, all the confetti came down! Tyler and Stephanie made and decorated a birthday cake. After dinner, we sang Happy Birthday to him and the kids helped Joshua blowout his one candle. We gave him a piece of cake... but was he going to eat it? NNOOOO! He stuck his finger in it and took a tiny taste, then proceeded to throw every bit of it on the floor!! Well, the dog enjoyed it anyways...

Tonight, as I sit here writing these precious memories and updating Joshua's page, Bryan (our oldest son) is in the kitchen cleaning up from a wonderful meal he, his girlfriend Kim, and their friend Heather made for us! We were treated to a spaghetti with meatballs dinner, and cake...Served with a beautiful card. Bryan planned this himself to "help make this time a little easier." What a guy!! Does he know his Mom or what?! He also has been very busy these past number of weeks "working on a special project." God bless his heart.

We have been so blessed in our lives... Precious children, loving family, and caring, wonderful friends. God is so good. He never promised life would be easy, but He did promise to be with us through it all. There have been times when we thought we could not take another step, but then somehow we got through. I know that's when God carried us. Through prayer, trust and faith we are assured He is near. Through the love, tears and compassion of others, we see the face of the Lord.

A few weeks ago, my sister said something to me that has really moved my spirit. She said, "Maybe, it's time to stop mourning and grieving for our son and to start celebrating his life."

Lord, God, as we celebrate Joshua's 3rd birthday this week, could you hold us close. We miss him being here so much, but know we could never match the party he's having in Heaven with Jesus! I can only imagine... Thank you for the special gift of Joshua and the lessons and blessings his life has brought.

HAPPY BIRTHDAY, BOO BOO!!
We love you.

Saturday, October 8, 2005 11:45 AM CDT

Today, we quietly celebrate what would have been Joshua's first 'GOTCHA' Day. One year ago today, we officially adopted Joshua. In a 45 second appearance in a Walworth County courtroom, the judge approved our petition for adoption, and named our son, Joshua John Edward Kasun. It took longer to take pictures, than it did to complete the adoption! All of the kids had dressed up for Joshua's special day. Stephanie said as we walked out of the courtroom..."I wore a dress for this?!" (She doesn't like to get dressed up!) As insignificant as it was to the judge, we were finally relieved to have this behind us. (Click on VIEW PHOTOS below to see more of his adoption celebration.)

It had been a LONG 18 months of waiting for that day. The process of getting Joshua to Wisconsin spanned the entire first year of his life. A major setback the previous October (2003) caused an additional 5 months delay in his coming home. Because of his medical needs, he was denied residence in the state of Wisconsin. We feverishly worked to get the adoption socialworker to complete the necessary applications to get the benefits/assistance we needed. Finally, in February of 2004, we received word that he was approved for SSI. Within a few weeks we had the paperwork completed by the state of NY, and Wisconsin accepted his ICPC. We brought him home to Elkhorn on the night before his first birthday.

Even on the cover of his adoption announcement I had printed the verse, "For I know the plans I have for you, says the Lord." Jeremiah 29:11 While we do not understand the plans, God does and we continue to trust the Lord. He know what is best . . . even though our desire would be that Joshua be here with us. We know he spends every day in the presence of his Creator, and look forward to the day God reunites us there.

Dear Heavenly Father,
Hug our little boy for us on this special day. We know you love him more than we ever could. Knowing how much we love him, makes the extent of your love unimaginable. Thank you for the time we did get to have with him. Amen.

Journal

Saturday, September 24th, 2005 3:30 PM CDT

This photo was taken last summer and is among our family favorites.

Even from his first visits to Auntie Lynn's house, where he watched (jumpin') Jack and Lacy (Taco Bell dog) wrestle on the floor, to his first days exploring our farm . . . Joshua ALWAYS loved animals (just like Mommy!) And they seemed to love him, too. It was surprising that with all the allergies he had, and how sensitive his skin was, he could have been very allergic to animals. God's blessing was that he wasn't!!

On this day, we were visiting with the outside inhabitants of our farm. I carried him up to the fence to say hello to Kaya, the horse, and he wanted to touch her. As I let him, Kaya snuffed out of her big nose at him and he just giggled and laughed.

Goatee was laying in his favorite hole in the yard, keeping cool in the heat. Joshua really wanted to go by the goat. We weren't sure if we should let him go, because Goatee had reacted to Tyler in the past. Sencing his gentle spirit, Goatee stayed there while Joshua sat on him. Neither were afraid of the other, and they just sat there, so we could have this special picture. Later, that day, he crawled around in the grass with just his t-shirt and diaper on, following the chickens and hoping to catch them.

Inside, he loved to pet Brutus (the BIG cat) and get licked by Rico (the dog.) His job every day, while the kids were at school, was to feed the guinnea pigs their carrots. One day as he was cruising around the house in his walker, he went by the piggies cage. Unfortunately, he didn't have a carrot that time, and one of the piggies thought his sweet, little finger looked just like a carrot, and promptly, took a bite! Joshua only cried a little, but being on Coumadin, he bled a lot!!!

I don't know if God has animals up in heaven, but I'm certain that if He does . . . Joshua is in the midst of them.

Saturday, September 24th, 2005 3:30 PM CDT

This photo was taken last summer and is among our family favorites.

Even from his first visits to Auntie Lynn's house, where he watched (jumpin') Jack and Lacy (Taco Bell dog) wrestle on the floor, to his first days exploring our farm . . . Joshua ALWAYS loved animals (just like Mommy!) And they seemed to love him, too. It was surprising that with all the allergies he had, and how sensitive his skin was, he could have been very allergic to animals. God's blessing was that he wasn't!!

On this day, we were visiting with the outside inhabitants of our farm. I carried him up to the fence to say hello to Kaya, the horse, and he wanted to touch her. As I let him, Kaya snuffed out of her big nose at him and he just giggled and laughed.

Goatee was laying in his favorite hole in the yard, keeping cool in the heat. Joshua really wanted to go by the goat. We weren't sure if we should let him go, because Goatee had reacted to Tyler in the past. Sencing his gentle spirit, Goatee stayed there while Joshua sat on him. Neither were afraid of the other, and they just sat there, so we could have this special picture. Later, that day, he crawled around in the grass with just his t-shirt and diaper on, following the chickens and hoping to catch them.

Inside, he loved to pet Brutus (the BIG cat) and get licked by Rico (the dog.) His job every day, while the kids were at school, was to feed the guinnea pigs their carrots. One day as he was cruising around the house in his walker, he went by the piggies cage. Unfortunately, he didn't have a carrot that time, and one of the piggies thought his sweet, little finger looked just like a carrot, and promptly, took a bite! Joshua only cried a little, but being on Coumadin, he bled a lot!!!

I don't know if God has animals up in heaven, but I'm certain that if He does . . . Joshua is in the midst of them. (Look for more pictures of Joshua and his pets by clicking on view photos.)

Thursday, July 14, 2005 10:24 PM CDT

Two weeks ago this moment, I held my son in my arms. I felt his heart beating softly and watched his beautiful, blue eyes look back into mine. Oh, how I wish I could go back to that moment for one more chance to stroke his fine, blonde hair... One more chance to smell the fresh scent of baby bath on his soft skin... One more chance to whisper the words, "I love you" into his little ear... One more chance to be his mommy. I wanted his eyes to look for me the last time they were opened, but as we prayed our final prayer, Joshua's eyes were fixed upon Jesus... exactly where they should have been!

Everywhere I look I see little blonde-haired, blue-eyed boys! My heart yearns for the future I would have had with our little Joshua. I'm finding it hard to figure out just who I am supposed to be now. God had placed such a strong desire to give myself so completely, to love Joshua so unconditionally, and take care of all of his very special needs. While I am confused at how all the pieces of this story work together and my empty arms ache to hold him, I will continue to trust in the Lord's plan and walk willingly to whatever path He places before me. I hear the voice of the Father say, "Well done," and have a sence of peace that can only come from above.

Some may question "How could a loving God let something like this happen?" Some may ask "Why didn't God hear our prayers?"

HE DID hear our prayers and gave us the desires of our hearts... according to HIS WILL. He took a little boy's fragile body and made it whole - perfect - painless. Joshua did get his new heart! Not an earthly one, but an eternal one. He dances with the angels (and doesn't get short of breath!) He is home. He is safe in the arms of Jesus.

Thank you for kind words of encouragement. Thank you for helping us keep our home standing, our pets cared for, our other children fed, nurtured and loved. Thank you for the prayers that have kept us strong, and the memorial gifts that will allow Joshua's life to continue to impact many, many more.

In Christ's love,
"Joshua's Mommy"

Monday, July 4, 2005 3:12 PM CDT

After Joshua's long battle for life, he has left this earth into the loving arms of Jesus. No more pain. No more suffering. Just perfect and whole. Dancing on streets of gold with Jesus.

Now we will celebrate his brief life on earth and his entrance into eternity.

Visitation on Wednesday, July 6 from 4:00-6:30
Memorial Service following at 7 pm.

Krause Funeral Home
12401 West National Ave.
New Berlin, WI 53121

While we appreciate your thought of sending flowers, we would prefer instead, memorials in Joshua's name to any of the following:

Ronald McDonald House Charities
www.rmhc.com or mail to
8948 Watertown Plank Road Wauwatosa, WI 53226-4802

CaringBridge website
www.caringbridge.org

Kids with Heart/NACHD
www.kidswithheart.org

Children's Hospital Foundation
(transplant, critical care, cardiology, or research) at www.chw.org/applications/PPF/DocID/749/MakeAGift.asp or mail to
Mail Station 3050, PO Box 1997 Milwaukee, WI 53201

Thank you for your constant prayers and support.

Love,
Mike, Debbie, Bryan, Stephanie, and Tyler

Saturday, July 2, 2005 10:25 PM CDT

The last 72 hours have been very difficult. Thursday night it was discovered that Joshua had yet another very rare condition in his blood, caused by the heprine used to keep the ECMO circuit from clotting. There was no known drug available to use instead of the heprine besides one never tried before in children. The doctors would have to guess what dose to use and the results could not be reversed if there were a problem. To remove him from the ECMO machine was our only option.

Still connected to the machines, we were able to take Joshua out of his bed and hold him on our lap. We held him... and held him... and held him. Our original intention was to remove Joshua from ECMO Thursday night. We went as far as calling the doctors in to the hospital to do that, but instead, we kept on holding him... the first time in weeks! Joshua was very comfortable, his heart rate slowed to a very good rate -- the best we'd seen in weeks. He was opening his eyes and looking at us -- even holding our hands. About four in the morning, we decided just to hold Joshua until Tyler, Stephanie, my mother and father returned from Door County and Debbie's sister, Lynn could fly in from New York later in the day.

Joshua had a good day Friday, only requiring a few doses of morphine when he got uncomfortable. He opened his eyes to greet everyone who came to visit him. We spent much of the day in prayer for his comfort and our strength. At about 8 pm, we gathered around Joshua and prayed again, everyone had a chance to add. His eyes remained open for the entire time we prayed releasing him into the Lord's hands. When we had finished, Joshua's eyes were fixed looking up, and he reached both arms strongly to heaven. We all cried as we knew at that moment, Joshua saw Jesus.

Joshua was not able to survive without the assistance of the ECMO machines and peacefully went to be with Jesus shortly after 9:15 pm. Debbie and I spent a few hours holding our baby boy, as we knew it would be the last time. We bathed him and dressed him in real clothes. No more tubes or wires. No more tears or pain.

We started making arrangements today and will e-mail again in the next day or two with our plans. Until then, please keep praying for our family's strength as we return home and find all of the beautiful reminders of our very special little boy.

In Him,
Mike and Debbie

Friday, July 1, 2005 11:38 PM CDT

It is with deepest sorrow that I have to inform you that Joshua passed away this evening at around 9:10 p.m. surrounded by lots of family and friends. Joshua knew where he was headed when he lifted his eyes and arms to heaven in the last moments of his life.

We will miss you tremendously, Joshua, and you will forever have a place in our hearts, just as you touched the hearts of everyone that knows you.

I love you Joshua......... Auntie Lynn

Debbie and Mike will update the journal when they are able. Thank you for your thoughts, prayers, and concerns. It means alot to all of us.

Please keep sending your messages of love and support.

Thursday, June 30, 2005 12:33 AM CDT

Mike and Debbie are taking a tremendous step of faith by allowing me to enter Joshua's journal entry for today. It is faith that they are allowing me to speak for them, and faith that they are trusting the most computer illiterate person in the world to update a web page.
Joshua continues to impact so many lives in so many powerful ways. The prayers that are being brought to God's throne on a daily basis number in the hundreds. The love that Joshua has shared and received is enormous. Alhtough he doesn't realize it, he has taught all of us so much about faith, hope, love, the value of life, and the resilient yet fragile nature of these bodies God has given us.
So, if quality of life was measured by a persons ability to have lasting Spiritual impact and influence, to love and be loved, and to draw people before the throne of God; then Joshua would be seen as having a very full life.
But we normally look at the physical aspects of life, and physically speaking Joshua is still struggling. His heart is still supported by the ECMO machine, which ensures proper blood flow; something his heart can't do on its own. His liver and kidneys are not functioning as they should. His body has been through some rough times. The Doctors and Nurses at Childrens have been tremendous and have given him the absolute best care possible; but machines and medicine are not going to be the cure for Joshua's body.
I would like to invite you to join me in praying that God - the great physician - would touch Joshua's body and miraculously heal Him. It is certainly not beyond God's capabilites, nor is it out of line for us to express that to Him as our hearts desire. Also, Join me in prayer for Mike and Debbie and their family. They need a strentgh and peace and wisdom that only God can provide.
Little Joshua is a tremendous gift from God. I hope that as you pray for and think of Him that you are reminded of the many ways that God blesses us everyday.
Thanks for letting me share on Mike and Debbie's behalf.
Sean

Tuesday, June 28, 2005 1:52 PM CDT

Joshua has been very quiet today. He did respond with a head shake once to my question, but is still feeling the effects of the extra sedation yesterday. A new ECMO circuit was sent in from Iowa, and installed without any initial complications. The new pump is similar to the original one he was put on except that it is supposed to be less damaging to the blood cells, causing less hemolisis. (breakdown of blood)

There has still not been any visible improvement to the kidney function, still only passing 1-2 cc of urine per hour. Dr. Van Whye is still hopeful and expects that we could see changes in the next week. Joshua's color is still fairly yellow due to the high bilirubin levels. The nurses worked very agressively to take the excess fluid off of his system and he is much less puffy today. He seems much more comfortable with the swelling of his belly down some. They have discontinued his GJ tube feedings as he is passing some blood in his stool. Doctors are monitoring that for infection or other cause.

Please continue to pray for a miracle and healing for his kidney and liver. We continue to trust this will happen in God's time. Pray that we can remain hopeful and patient. Hug you kids extra for me today. I'm feeling very much the effects of not being able to hold him in my arms. Thank the Lord for all of his wonderful nurses!

Sunday, June 26, 2005 3:28 PM CDT

The past few days have been a lot of waiting. Nothing has changed much aside from the "tweeks" they make to his fluid levels, machines and medications. He continues to be sedated to the point of almost continual sleep, though he wakes up briefly and opens his eyes or squirms around. The concern of allowing him to become too awake is that he may move too much and pull out his ECMO cannulas in his neck. Considering how hard they were to put in the first time, (due to the blood clots in his neck) the doctors are afraid of having to go through that again.

His kidneys are still not showing any sign of improvement and dialysis was started during the week. His billirubin level is down slightly today. These two problems along with his clotting issues, remain the biggest hurdle to doing the transplant.

We had a meeting with all the doctors on Thursday to discuss the option of using the Berlin heart. (infant size - ventricular assist device) We are disappointed that they feel it is not an option at this time, but understand their reasoning. They feel the best chance Joshua has is to keep him on ECMO, as this gives easy access to do the dialysis without risking further clotting. Then, once the kidneys show they are healing, we will take the first window of opportunity to wean him off ECMO and move forward with transplant. They repeated the Rituximab treatment on Friday night to continue the process of decreasing the antibodies and getting him ready.

We have had much concern this week about his brain function. With him being on so much sedation, it is difficult to assess his neurological status. While the doctors and nurses say they feel he is "all there," the real confirmation came to us today when he opened his eyes and whispered very clearly, "ALL DONE!" He has also shaken his head "yes" in response to a few questions. God continues to bless us with these little tidbits that give us peace, and we continue to remain hopeful.

Many of you ask us what you can do to help out. Prayers are the biggest need we have. God will certainly hear the prayers of the faithful! But daily, we realize the great need for Joshua to receive the blood products he requires daily to sustain him. If any of you are O- (O negative) type blood and are willing to donate whole blood, (takes about 25 minutes & can be given every 6 to 8 weeks) plasma, (takes about 45 minutes & can be given every 4 weeks) or platelets (takes about 1 and 1/2 hours & can be given every 2 weeks) in his honor, it would be greatly appreciated. Doctors orders are set up for him to receive direct donations through the Wisconsin Blood Centers. Even if you can't donate directly, it still is greatly needed for others in the same situation.

This has also opened our eyes to the need for donor organs (of any type)across the USA. If you haven't thought about it before, we encourage you to discuss it with your families, make your wishes known, and sign the back of your drivers' license.

Thank you for visiting Joshua's page today. Please sign the guest book often. The notes keep us encouraged every day. God will surely do something incredible with all of this... no matter what. We trust in His will.

Wednesday, June 22, 2005 11:57 AM CDT

It's been a busy few days with all that's been going on, so I apologize for the delay in updating the journal. Thanks for your patience.

Not many changes in Joshua's condition since the last update. The kidneys are still not functioning and they are starting dialysis today. The liver seems to be improving and brain function is a little difficult to assess yet because he is still sedated and the kidneys are not able to filter out the medications. The ECMO circuit is going to be changed out again today and the dialysis will run directly through the circuit also to prevent IV pokes and possible bleed sites/infection possibilities. His lungs are having some problems, again, and appear to be showing as very "wet" and collapsed in areas.

The many physicians are extensively researching the possiblity of connecting Joshua to a "Berlin" heart which is the only option of an artificial ventricular assistance device that might give him some time to let his kidneys and liver heal so that a transplant can be done. It is only a "bridge" to the transplant.

Joshua was put on a level 7 for transplant, which basically is a suspension or "hold" on the transplant until his body is healthy enough to receive a heart.

Joshua is not in a completely unresponsive state, he does react to pain and touch and doesn't like it when the nurses suction his breathing tube. He continues to touch the hearts of all the people that come in to visit and he has quite a "Fan Club" of doctors and nurses! The nurses that are supposed to be showing support for family even come in with tears in their eyes - showing the human emotion side of the job.

We continue to rely on all of your faith, support and expressions of concern for Joshua and our family. We believe that this is all part of God's plan for Joshua and we may question things at times, but in His time it will all come together.

We remain hopeful and trusting in God.

Debbie and Mike and family

Sunday, June 19, 2005 9:41 PM CDT

Today Joshua is doing as well as can be expected. They switched his ECMO(heart lung bypass pump) today. The pump he was on actually damaged the blood before it entered his body so they had a difficult time stabilizing his blood. With Joshua being on a different ECMO hopefully his kidney and liver will recover faster. Before we can even move forward towards a transplant we need to make sure Joshua is ok. There are good signs that his brain was not too badly damaged, he's been wanting to rub his eyes, and he
even gets mad when they have to suction out his chest. That's great!

Most kids that are on ECMO can only be on it for 1-2 weeks and sometimes up to 4-5 weeks. So the cardiologist also suggested that if we need to buy more time that we could try an experimental heart device like a Berlin heart.
They are not approved by the US government, so we would need special approval, but that shouldn't be a problem.

Thank you to everyone for your prayers and support! We thank you.

Happy Fathers Day.

Mike and Debbie.

Friday, June 17, 2005 5:53 PM CDT

Over the past few days Joshua's health continued to deteriorate. He was retaining alot of fluid, his stomach had become distended, he was having difficulty breathing, his color wasn't good, his heart rate was nearing 200 range, and he was very agitated and uncomfortable - Just not his happy, go-lucky, smiley self!! He was having a very hard time fighting off infection and the nursing staff has to be very cautious with all procedures because the anti-body (Rituximab) treatments are designed to supress the immune system making him more suseptible to infection.

On Thursday it was decided to take him back to the PICU to monitor him more closely. Within a short time they lost his pressure completely. They began intubating him to assist with his breathing and give his body a break. Unfortunately, his heart arrested twice and he had to be shocked and CPR was necessary to bring him back. The surgeons were called in and he was placed on an ECMO heart-lung assist device. We do not know if there was any damage to his vital organs at all from the cardiac arrests. He has still not regained consciousness and until he responds it is hard to tell if any damage was done. There is a risk that the agressive CPR could have dislodged some of the many clots in his little body.

ECMO is a short term solution (usually 2 - 3 weeks) that will hopefully give his body a rest. However, if they try to wean Joshua off ECMO and his heart isn't strong enough, his condition would be life-threatening if we don't have a donor heart at that time.

We will be moving forward very aggressively to remove the cross-match requirement from his heart transplant listing to make him more available to receive a heart from anywhere, and not just locally.

God is in control and we appreciate all of your prayers and concerns.

Friday, June 17, 2005 5:21 PM CDT

Over the past few days Joshua health continued to deteriorate. He was retaining alot of fluid, his stomach had become distended, was having difficulty breathing, his color wasn't good, his heart rate was nearing 200 range, and he was very agitated and uncomfortable - Just not his happy, go-lucky, smiley self!! He was having a very hard time fighting off infection and the nursing staff has to be very cautious with all procedures because the anti-body (Rituximab) treatments are designed to supress the immune system making him more suseptible to infection. On Thursday it was decided to take him back to the PICU to monitor him more closely. Within a short time they lost his pressure completely. They began intubating him to assist with his breathing and give his body a break. Unfortunately, his heart arrested twice and he had to be shocked and CPR was necessary to bring him back. The surgeons were called in and he was placed on an ECMO heart-lung assist device. We do not know if there was any damage to his vital organs at all from the cardiac arrests. He has still not regained consciousness and until he responds it is hard to tell if any damage was done. There is a risk that the agressive CPR could have dislodged some of the many clots in his little body.
ECMO is a short term solution (usually 2 - 3 weeks) that will hopefully give his body a rest. However, if they try to wean Joshua off ECMO and his heart isn't strong enough, his condition would be if we don't have a donor heart at that time.
We will be moving forward very aggressively to remove the cross-match requirement from his heart transplant listing to make him more available to receive a heart from anywhere, and not just locally.
God is in control and we appreciate all of your prayers and concerns.

Monday, June 13, 2005 1:03 PM CDT

Last night, Joshua spiked a temp. and was put back on antibiotics. During the afternoon his heart rate was very high in the upper 170's and 180's. His energy level was very low and he wasn't even interested in playing, but he was excided to see daddy and the kids.

Lab tests are being done to find the source of the infection. Because of the rituximab, his immune system is subject to infection. Also, his lungs had a little more fluid and his sats were lower.

Stephanie spent the night with mom and is being a big helper today. He enjoys having her there. Joshua is still that strong, little, cute boy that he always was and always will be.

Sunday, June 12, 2005 8:48 AM CDT

The treatments Joshua received on Thursday (Rituximab)and Friday (IVIg) went well. He got through them without any major side effects. His pressure did drop a bit with the IVIg, but didn't last too long. They gave him the Benedryl and Tylenol first and that seemed to help. He was moved out of the PICU and back to the 4th floor yesterday. The Rituximab will be repeated this week, then they will recheck his PRA level to see if any affect has been made.

They are having some trouble again with his PICC line being a little sluggish going in and hard to draw out, so an ultrasound was done to check the line for clots. TPA was used to clear the line and it seems okay for now, but Joshua's clotting disorder continues to create problems. Dr. Zangwill thought his dropping platelet count was due to more clots forming or enlargment of the existing clots. The ultrasound showed new clots in the right side of his neck and one other place, although they are not blocking flow completely, there is that potential. Dr. Zangwill is anxious to see just how much clotting there is when they do his transplant surgery. He thinks it is more extensive than they know.

Some thought was given to going back to IV heprine instead of the Lovenox shots he gets in his leg twice a day, but after further thought, we may keep the shots for now as the IV method would require sticks for lab draws to check the level every six hours. Didn't seem like a better option, considering he is a very hard stick and they usually end up "fishing around" in there with the needle for the vein every time.

Glad to have him back to the floor where he can get out a little for walks and play. He is being SOOOO good! He is incredible!!

Wednesday, June 8, 2005 8:19 PM CDT

Today was a long day. We expected to begin the Rituximab treatment early this morning. Unfortunately, his uric-acid level was too high and medication had to be given to lower it before we could proceed. The Rituximab tends to increase the uric-acid level itself, so we couldn't start at a level that was already elevated. We did get to meet with all of the doctors this morning to discuss the treatment, the benefits of using it, and its potential side effects. The benefit would be that if the antibody reaction would be minimized, Joshua could get a heart sooner by removing the need for such a specific match. There are risks though with the treatment, and they have decided to move him back to the PICU for the next few days in order to monitor him more closely. The Rituximab will be followed by the IVIg treatment to clean his blood of existing antibodies.

Please pray that the treatment will not make his heart worse (or any other serious side effects for that matter) and we will achieve the desired outcome. It has become very evident just how much he needs a new heart, so we have to take the risk and remember that God is in control.

Tomorrow is also the last day of school for our kids, and the change in routine for them (and daddy being able to manage more at home) may be a little rough given all that is going on. It looks like we may be here for a while yet, so we have to figure out how to make it easiest and best for them. I know we can't expect them to spend their entire summer in the hospital... so if you could also pray about that. Thanks!

Joshua is more tired these days. We take him for short walks around the halls and outside in the stroller, with his IV pole, O2 tank, all his bells and whistles. He also enjoys going to the lobby to wave to kids going in and out, or watch them play in the play-room. His favorite activity is to play at his water table, pouring and splashing water. It's good therapy. The sign on the door to his room reads, "Welcome to Joshua's Waterpark!" He continues to find some joy midst all the other stuff. He is amazing.

Monday, June 6, 2005 10:41 PM CDT

What started out to be a "first thing Monday morning" procedure, ended up happening today at 12:45 in the afternoon. After being off his Milrinone drip since his IV blew at 6 am Sunday morning (over 28 hours) I was starting to get nervous. They wanted to put in a new IV on Sunday, but held off for the new PICC line today. Luckily, they even held some of his lab draws to avoid the extra pokes. The PICC line is back in now, so everything can be done through it; draws out and meds in. From the sedation, Joshua slept the entire rest of the day.

His puffy face has not gone away. They weighed him tonight and he's up to almost 26 pounds. The biggest cause of that is with all his feeds going directly in the intestines, he doesn't throw up his food at all. It's all going to gaining weight. He does still gag and wretch for minutes at a time, but nothing or not much comes up. I'm sure the excess fluid adds a little bit to the weight gain as well.

The doctors did another EKG today to check his heart rate and rhythm. He had some sudden, unexplained changes in the rates over the week-end. His heart rate went from the 160's (which is very high) to 120's (which is better), but the sudden change was concerning. The rate has crept back up today into the 140-150's. I'm anxious to discuss the results of the holter monitor and EKG's tomorrow.

Tuesday, they will check his and give him more if the CRIT levels are still low. They also want to level out his electrolytes. Wednesday, they will start the Rituximab to try to lower the antibodies. We wouldn't know for a few weeks the impact that will make on the numbers of antibodies. If they go down, we may be able to take the crossmatch requirement off his transplant listing, opening the door to more calls for a heart. We know now that we are definitely on the right path (toward transplant) as we can see how weak his heart is already and how quickly it can change. Waiting is the hard part, but we get a lot of strength from all of your prayers and notes...many of you who we don't even know! A "Thank You" is all we can give back right now. We'll trust God to supply your reward.

Saturday, June 4, 2005 8:48 AM CDT

Joshua had a rough day yesterday. He was throwing up a lot, although there was nothing in his stomach. Once started, he heaves and wretches for minutes at a time. (Not very fun when we took him down to the cafeteria while we had lunch!)I have concern that maybe his J tube has become displaced and maybe some of his meds or feedings are ending up in his stomach, causing him to throw up. Hopefully we can check that out today. No one can figure out the cause of his vomiting.

The loss of his PIC line during the week has created the need for pokes when he needs blood work. Unfortunately, there is nowhere to find a vein to use, so it often results in multiple sticks :( An order has been made to put in a new PIC line on Monday. Waiting to see results of a chest x-ray today as his lungs have been more wet recently, maybe another possible cause of his throwing up. He is also back on O2 for low sats and will need to receive a blood transfusion for low CRIT levels, after the PIC line is in place. Dr. Zangwill is going to try the Retuximab on Monday as well. This is the alternative treatment to clean the antibodies out of the blood. More blood transfusions... more antibodies.

We continue to take one day at a time as if we try to figure out a plan for any further, things change. Joshua is a very special boy. The nurses can't believe how good he is! We continue to cherish each day we have with him.

Wednesday, June 1, 2005 4:16 PM CDT

Joshua is more smiley today than yesterday. As a matter of fact, he and Mommy sat for almost an hour outside the front entrance of the hospital. Joshua was the official greeter to everyone going in and out, and waved to every car that drove by. We had a chance to see a few of his doctors from the PICU, who were amazed to see how good he looks compared to then.In contrast to yesterday when he just wasn't himself. Even a trip outside to the patio with a ball didn't do it for him.

The PIC line was removed and sent for culture. Loss of the dual access lines required the placement of 2 peripheral IV, which a wonderful nurse got right away, first try! Unfortunately, one of them blew the first time they went to use it and had to be redone. He was such a trooper. He continues to be treated for the infections with antibiotic. The doctors are discussing an alternative to the IVIG, which we had an allergic reaction to last week. I guess it's something new that he would receive a dose weekly, over 4 weeks. This would decrease the number of antibodies in his blood in preparation for the transplant. The idea of him being able to go home in the mean time is still a possibility once the infection, feeding issues and excess fluid are resolved, but probably not for at least a couple weeks yet.

Today, some high heart rates caused concern and an EKG was done. He was also hooked up to a holter monitor to record his heart activity for the next 24 hours. This will allow the doctors to see if there is any episodes of arythmia.

PT also came to do an evaluation today and he had about 15-20 minutes of physical activity... after which, he promptly threw up! They will try to work with him every couple days to increase his strength and tolerance. All for now!

Monday, May 30, 2005 2:32 PM CDT

While many of you were spending the holiday at a park or BBQ somewhere, Joshua enjoyed time out of his room, circling the halls in his stroller, and watching the "Flight for Life" helicopter, that lands on the roof of the hospital next door. Yesterday, he got to meet Adrian's dad, Lothar, from Germany. Joshua attempted crawling and even sat on Lothar's lap for a little while.

Lothar was glad to meet our family a little at a time! Saturday night he met Mike, Bryan and all the fuzzy animals at home. Sunday morning, after a big farm breakfast, he enjoyed visiting with a friendly chicken in the yard! Then, Mike, Bryan, Lothar and Adrian, went to a Brewer's game and took a ride through Milwaukee/Lakefront before coming to the hospital. In the evening, we all went to Grandma and Grandpa Kasun's for a wonderful dinner to celebrate Adrian's 18th birthday. Grandma and Aunt Vicki made all of Adrian's American favorites. There Lothar met Tyler and Stephanie. They were going to try to go to a parade today before Lothar leaves to go home tonight.

Joshua is doing okay. He continues to have fevers on and off. The infection appears to be somewhere in his PIC line, so they will probably have to replace it. Saturday night his O2 sats were low (in the mid 80's) and he was put back on oxygen. His face looked very puffy to me. Dr. Frommelt had a check x-ray done Sunday morning, and he did have fluid in his lungs. While he is still puffy, IV lasix has helped with the fluid and today his sats are back in the 90's. His feeds are now up to the target does of 45ml/hr for 20 hours per day, and he is off all IV nutritian, which can be hard on the liver. Not much else happened over the week-end. Will know more when all the doctors are back tomorrow.

Friday, May 27, 2005 8:51 AM CDT

Joshua finally started his IVIG treatment on Wednesday. Unfortunately, after receiving less than 10 ml, he had an allergic reaction. He began to get hives on his hands, face and back, his lips and tongue swelled, and he was holding his head, (either dizzy or a headache) so the treatment was stopped. IVIG is used to clean the antibodies out of the blood in preparation for the heart transplant. He needs to have this done, so another attempt will be made in a few days. He will be given Tylenol and Benedryl to combat the side affects prior to treatment.

Yesterday, he ran a fever, for which Tylenol was given. He either was still reacting to the IVIG, or he has a infection somewhere. He also has an infection is his PIC-line which is being treated with antibiotics. If it's the same type of bacteria as before, they will probably replace the PIC with a new central line. These give him longer term access to receive his IV meds.

Joshua continues to throw up a few times each day from water or coughing, but his feeding via the GJ tube is going well and he has gained back the weight he had lost. He is close to his normal daily intake which is given continuously throughout the day and night at 38 ml per/hour. They will discontinue his lipids today. This is an important step to be closer to going home. He also receives OT and Speech/Feeding Therapy a few times per week. We are still waiting for the PT evaluation, and will continue Birth to 3 therapy when he goes home.

Emotionally, we are doing pretty well. The days get pretty long here, and Mike is busy with the kids at home, getting ready for Adrian's dad visiting from Germany this week-end, and getting the kids ready for the end of the school year, which is only 2 weeks away. Joshua is his happy self... a real charmer for the nurses. They know all the tricks to make him laugh and cooperate with the things they have to do. God has given him such an awesome spirit... one that even this physical body cannot contain. It will continue to soar no matter what happens. We are so blessed.

Monday, May 23, 2005 3:42 PM CDT

Joshua had a quiet weekend and was very happy. He even got to do laps around the hallways in a wagon, which he loved, but tired him out. The transplant team had a meeting early this morning to discuss Joshua's case and Dr. Berger came to visit. He has recommended that we try a one-day dose of IVIG to clean his blood of some of the many antibodies it contains. Then, his blood will be tested again next week to determine if it made any difference. (The antibodies in his blood would attack the new heart as a foreign substance if we didn't get rid of them.) They have yet to start it today.

We also got a referral for physical therapy, occupational therapy and the speech/feeding therapist to come do an evaluation. Hopefully, we can resume his therapies while he's in the hospital to get him stronger again. We have gotten his G/J tube feedings up to 35 ml per/hour (running continuously) and discontinued the IV-TPN. The goal is still to get him home while we wait for transplant . . . and getting closer.

Over the weekend, I met a little 6-year-old boy, named Kyle, who had a heart transplant here at Children's Hospital on Feb. 18th. He went home today. (Yippy!) I enjoyed meeting his Dad and spent over two hours talking to his Mom last night. It was great to hear his story (except for the fact that it took two years and three months to get his heart.) It was just the right time though, as he was very sick leading up to getting his heart call. What an inspiration Kyle was to me. His Dad asked Kyle if he thought Jesus had a heart for Joshua too, Kyle said, "Yes." Kyles circumstances are very simular to Joshua in many ways, so it was great to meet him and see how well he is doing. We wish Kyle and his family the best. God watch over them.

Thursday, May 19, 2005 8:31 AM CDT

To all of our visitors who look daily for an update, sorry for the delay in getting this posted. Many things have been happening this week at home and here at the hospital (and Joshua's lack of sleep makes it hard to get to the computer.)

Good news for our little guy is that he is doing much better. His smiles have brightened our days! The doctors are pleased with his progress and he was moved out of the PICU yesterday afternoon. He is now back in his same room on the 4th floor. (room 411)

The IV heparine was discontinued. Unfortunately the replacement is lovenox, which will require two shots per day. I think the oral coumadin is not an option as it requires to be discontinued a week before any procedures/surgery. We are now in the waiting stage, as Joshua was officially listed for heart transplant on Tuesday. We will pray for God's timing, with just the right heart.

His feeding still remains his biggest hurdle between here and home, but he threw up less yesterday, so maybe we're getting closer. Yes, he could go home while we wait for his new heart if everything else looks okay. He will probably go home with an IV for the heart medication (milrinone) ....whatever it takes. I guess I'm closer to my nursing career than I thought!! God has such a sence of humor, doesn't he? The nurses here fight over who gets to take Joshua each shift. I get him ALL the time! I am so blessed.

We thank God for all of you, and we appreciate your continued encouragement and prayers.

Monday, May 16, 2005 0:41 AM CDT

Joshua had a very good day. It started out with being sedated to change some dressings, which made it a lot easier on him. We had LOTS of visitors today...Daddy, (Daddy was very tired and sore today from finishing 6th place out of about 280 in his second 50 mile race on Saturday) Bryan and Stephanie, Auntie Judi, Granny and Papa, and two families from our church. He enjoyed seeing everyone and gave lots of smiles. We saw Uncle John and Uncle Mike on Friday, too.

The drainage decreased, so the two chest tubes were removed yesterday. The catheters in his neck and groin were removed the day before. He continues to run a temperature on and off. Today, he threw up quite a bit, even with the new feeding tube they put in Friday, which bypasses the stomach and goes directly to the intestine, (called a G/J tube). The transplant team will meet tomorrow to discuss the results of the evaluation last week and make their final recommendation. From discussions with the cardiologists on Friday, we were able to understand the issues with his heart. He requires a lot of support of oxygen and medications. Even if they could do another surgery, his heart function is still poor. I'm hoping to talk this week to another mom who's 6 year old child just had a heart transplant. He was also born with HLHS.

If God's will is that Joshua get a new heart, we trust in his timing. We also pray for the family who will lose a child so that Joshua can have another chance. Some day in heaven we will understand all of this.

Thursday, May 12, 2005 0:42 AM CDT

It is 12:45am and I am just leaving Joshua for the night. He was having a lot of trouble getting to sleep, so after 2 hours of trying, we gave him a little something to help him. Today we had to change a lot of his IV dressings. Because of his allergy to adhesive tapes, combinations of particular tapes need to be used to protect his skin. Of course, removing the 4 x 4 inch tapes is pretty rough on him.

We spoke with the neurologists today and got a good report in regards to his seizures/brain activity. The spikes in his EEG did not show (in comparison to the one done last fall.) He does have some areas of damage from his strokes and shows slower reaction times, but otherwise the doctors were pleased with where he is at and he will remain on his current meds.

Joshua continues to throw up and is not being fed anything by mouth or G-tube, except a little water. He did enjoy putting ice in his bottle and splashing his hands in a little tub of water. We saw LOTS of smiles and Daddy even got him laughing by doing silly stuff. He was happy to see his brothers and sister today and they made him a banner for his door. Thanks for all the cards, emails and prayers, and for all the help with kids, cleaning and meals at home. We are very grateful!

Tuesday, May 10, 2005 12:11 AM CDT

Here is Joshua�s update�

He has had a number of fairly quiet days � no major changes or procedures. His PT/PTT blood levels continue to fluctuate requiring adjustments to his medications and giving plasma. Two of the main concerns are his CVP (veinous pressures) continuing to be very high and he continues to have a fairly large amount of chest tube drainage. He runs a temperature on and off. We did start back on his feedings at a very small amount to see how his tummy will handle it.

While we haven�t yet listed him for heart transplant, we have initiated the process of having him evaluated for it. The areas of concern would be neurology (because there would be a larger risk of seizures after transplant); hematology (because of his clotting issues); and because of frequent blood transfusions, he tends to react to antigens (foreign substances - ie. transplant) in his body by forming antibodies to them to get rid of them. We already know that the heart he could receive would have to come from a local donor so there would be time to crossmatch the blood for reaction. Following the evaluation we would know if he would be a candidate for transplant and could then list him if everyone agreed. His current condition would give him the highest priority status and be close to the top of the list. Prior to his surgery, his heart function was already not good, so the idea of transplant was just a matter of time.

Please continue to pray for Joshua to get stronger and be comfortable. He is back to sitting up a little with support, watching TV, playing, reading books and a few smiles. He didn�t get much sleep last night, so he is napping now, if everyone will just leave him alone for a while. Continue also to pray for the doctors to be thorough and diligent with the testing and that the decisions made would be the best for our little man.

Monday, May 9, 2005 7:48 AM CDT

I am passing on the email updates from Mike for the past 2 days.

May 8, Joshua update.

Today was a much better day. The picture I attached was about as happy as
he's been in a week. I guess that doesn't say to much for were he's been.
He
actually really looks good in this picture. If you want to see more
pictures
go to my web site www.kasun.com and
search: joshua
search: xray
to see an x ray of what's going on inside him.

The medical team left him alone. He's still recovering from his bleeding
problems, his chest is still draining and his stomach is large but
smaller
than yesterday. He actually sat up for 5 minutes. I think I actually got
half a smile too. Joshua was able to watch some tv today without crying
every 5 minutes. He also sat more upright to help his chest and lungs
drain.
His breathing was shallow and a bit labored, but we hope that goes away as
his stomach absorbs the fluid.

Debbie and I had another discussion with the cardiologist at Children's
and
hesuggested to wait a few more days to make the decision whether or not to
look for a transplant for Joshua. We need to make many more cardiac
comparisons and deeply evaluate every aspect of this decision. Its going
to
be a juggling act, trying to decide when is the right time to place Joshua
on the list. Unfortunately, with all the transfusions Joshua has received,
his blood has anti-bodies which make rejection a higher possibility.
There
are drugs that can combat anti- bodies, but none the less it makes
transplant a more difficult process. It also means that the heart would
have to come from a local donor, because of needing to make a perfect
blood
type/ heart match that won't be rejected. It could also mean that it will
take longer to find a donor.

Debbie and I were able to spend most of the day at Children's hospital
today
with Joshua. It was a very nice treat. Debbie was glad to be there with
Joshua and a short time with Tyler and Stephanie.

That little guy sure is tough.

We still pray that Joshua's heart will clear itself of clots and that he
can
regain the strength he had before his surgery. We pray we can wait with
his
transplant, and that his heart will grow in strength. We also pray that
the
doctors can be thoughtful and conclusive in all that they do for Joshua.

Thank you for your prayers and thoughts and food.
Mike.

May 7 Joshua update.

Sorry it took me so long to update Joshua's condition. The last 2 days
we've
spent trying to recover from The "TBA Disaster". That's what the
cardiologist called it. TBA is the anti coagulant drug which Joshua got
to
much of.

Since the last time I emailed Joshua's update he's had 2 chest tubes put
in
for drainage, and many more plasma and blood transfusions. It's been a
fine
line between blood that's to thin and clotting to much. Now we're battling
with fluid in his stomach cavity, which they really don't want to have to
drain if they don't have too. They're worried about infection.
Unfortunately
Joshua's liver is enlarged and he looks very puffy because basically he
bled
internally from his super thinned blood. He's on sleeping meds and
morphine
for pain. His temp spiked to 103.6 today but Tylenol took it down. He's
been
able to have some ice in a bottle. He 'gets mad if he can't have that. His
mouth is real dry and it must feel great.

The next move.
It sound like we have 2 options and Debbie and I have to decide what to
do.
We weren't prepare to have to make this decision yet. We can place Joshua
on
the National transplant list for a new heart or see if his clots clear and
try to hold on with what he's got. There are risks for both options and
long term there's no guarantees. We can't even say how long a transplant
would last, many things can happen, rejection, Lymphoma, cancer, and
infection due to an depressed immune system. Those are the negatives, the
positives; 2 months to 10 years of life, 100% oxygen and great blood
pressure. He could run and play and almost be normal. A second transplant
is
possible.

How ironic that it's mothers day when Debbie and I have to choose whether
or
not our son should have a heart transplant.

If he can keep the weak heart he has for a while, it might extend the
amount
of time before his transplant. We don't know however if the rest of his
organs are being compromised or how long he'll just get by. His heart is
very weak, the right ventricle was not designed to do what it's doing, so
it's always working overtime, and double duty.

Just surf the web for heart transplants info if you'd like to know more.

It's all way to complicated to explain, so please just pray for Debbie and
I
as we make this decision. We pray for strength, courage, wisdom and
patience
so we can make the best decision possible. We pray that the doctors will
consult each other cautiously and be skill full and thoughtful in all they
do for Joshua. And please pray for Joshua, that the fluids would clear up,
his blood clots would dissolve, that he would grow in strength and come
home.

We thank everyone for they're prayers, support and meals!

Mike.

Saturday, May 7, 2005 1:26 AM CDT

This update will be as hard for me to write as it will be for you to read...

Joshua has had a few very tough days. The TPA "disaster" which caused Joshua to bleed on Wednesday night has been discontinued. (TPA was the medication used to dissolve the clot found in the Fontan.) Blood had been collecting probably since the surgery on the 19th, despite the use of the blood thinners. Joshua has been very sick the past few days, so the doctors gave him a few "days off" to recover. He has continued to be uncomfortable as his little body is filled with fluid. A chest tube was placed Wednesday night to drain the fluid from his right lung. An x-ray last night showed fluid in the left lung as well, but the doctors are not going to put in another chest tube at this time. Also, his tummy is very puffy. Medications are being used to draw the fluids out of the tissues and back into the veins so the can be released. His chest tube allows a lot of drainage, but there's still lots more.

So... the issue of the clot in his heart has been put up for discussion with all the doctors here and many other professionals around the country. They really don't know the best route to take to help Joshua. They have considered surgically removing the clot, redoing the Fontan proceedure with another type of tissue or going as far as a heart transplant. These are some very major decisions to consider and we will meet with the doctor in the morning.

We need your prayers and support more than ever. Ultimately, the entire situation rests in God's hands. We pray that He will give us all the information we need to make the correct decisions for Joshua. Lord, please keep him strong and take away his discomfort/pain. (He has been sedated quite a bit to keep him comfortable.)

Thursday, May 5, 2005 8:31 AM CDT

Yikes... 1:15 am Thursday.
Debbie just called me to tell me that the medical team finally got Joshua's bleeding to stop. Another transfusion and yes, clotting agents. Very antiproductive. By 1:00 this am they had taken the third xray of the night
and had determined that there was build up of fluid in Joshua's chest and they had to relieve the pressure by inserting a chest tube. Four chest tubes out last week and one back in today. Thankfully the fluid was not blood
but clear, and that's a very good thing. A build up of fluid would constrict Joshua's heart from pumping, (weak already) so they had to relieve the pressure. Debbie just wants to clean him up, and she can't because they
want to make sure the clotting is done before she does that. She'll have to wait for morning.

Thursdays another day, praying for good news and a better day.

6:10 Wednesday
I just got off the phone with Debbie. As she was standing next to Joshua's bed, she noticed he was starting to bleed from his mouth nose and IV sites.
The nurse quickly turned off the anti coagulating meds and got him cleaned up. Unfortunately the meds that are suppose to remove the clots needed to be discontinued. All the doctors will regroup in the am and try to come to
some conclusions.

Update 5.04

Today we waited. Joshua had a blood transfusion, a plasma transfusion and to many other drugs to list. (Besides I'd never get the spelling correct.) At 3:00 Joshua had an internal ultrasound through his esophagus. They wanted
to see if the anti coagulants had begun to dissolved the clots in Joshua's heart and Gortex bypass artery. We had hoped for some progress, but there was none to be found. There was no change in any of the clots, and they
still present a real problem. The clotting issues Joshua is facing is very rare, and the doctors are doing all they know to remove his clots. Joshua is sedated, and on a ventilator in PICU. They're trying to decide what's
next,and I don't think they have a real clear idea of what to do.

Some of the possibilities they've discussed:
Continue the anti -coagulating drug
try a different drug reverse his surgery (re-operate) to remove the artificial veins transplant.

Hug your kids today, you never know what tomorrow will bring.

Mike.

Tuesday, May 3, 2005 2:25 PM CDT

Joshua had an Ultrasound of his heart today and The Cardiologist had a
couple of concerns. The "Fenestration" or opening to the heart was very
hard
to see and the main artery that delivers blood to one of his lungs is very
small. The Cardiologist didn't remember the artery being that small. She
feels it might be a blood clot. So she was going to compare today's
Ultrasound with an old Ultrasound to see the difference. After this test
the cardiologist felt that she still needed a better view, so Joshua will
have to under go yet another test today. They will do a Cardiac
catheterization, through the large vein in his groin. This will hopefully
let them see what's going on. We don't know much more that that, we just
realize that we're not out of the woods yet. He looks so good it's hard to
believe that things aren't quite right yet.
So please keep praying.

Mike.

Sunday, May 1, 2005 10:19 PM CDT

I'm just leaving Joshua after a long day of visitors. (Granny, Papa, Grandma, Daddy and the kids) He's awake, laying quietly in his bed, looking at all the monitors blinking and flashing at him. Even though he had lots of activity, and didn't have much sleep today, he just can't go to sleep. Seems like every time he does, he gets woke up. He did have a great night sleep last night though, so maybe that was what he needed, and will again tonight.

Joshua enjoyed rides in the wagon around the halls and down to the cafeteria with Granny and Papa for lunch. He wanted everything on Mommy's plate . . . peas, carrots, chicken, chips and a sip of coke! (the chip and soda was the only thing he actually put into his mouth.) He did have a few pretzles and a little apple juice this afternoon and didn't throw up at all. Minor miracles! We're working at increasing his tube feedings to see if we can get back to his normal intake.

His blood PT/INR is still very high today, so the PIC line and pacer wires still can't be removed. Maybe by Tuesday. We will talk to the hematologist tomorrow to discuss his blood clotting disorder/medications. Other than that, there's not much keeping him in the hospital. His incision looks beautiful - healing very nicely. We will have to work with the PT/OT therapists when he gets home to get his strength back. But, he's getting back to being himself. Smiling, laughing, and doing silly things (like "boof" wacking himself on the head with his hand!)

Thank you all for the prayers, messages and encouragement. It means more than you could know.

Saturday, April 30, 2005 1:29 PM CDT

Joshua is continuing to do a great job. Today he had his chest tubes removed. What a brave little guy he is! One shot of morphine relaxed him and his nurse Ruth, Dr.Mike and Mommy sang songs to him as the 4 tubes were pulled out. Also we're trying to see how he'll do off of oxygen. So far,he's tolerating it very well. Without all the tubes, he's a free man! He got to ride in a wagon around the halls and to the play room. His eyes just lit up! He'll spend the afternoon sleeping off his morphine. Unfortunatly, his PT/INR was to high today (blood way to thin) to remove his pacemaker wires as they are attached directly to his heart. So, we will have to go through the same process on Monday. Feedings are going very well via his feeding tube and he's drinking some water through a straw, although he's forgotten how to swallow and every sip results in a cough and sputter. Definately something to work on. We'll spend the rest of the week-end getting stronger and visiting adorable little Audra across the hall. She also had heart surgery and celebrated her 2nd birthday yesterday. We will pray for her too. Thank you, God for making these little ones so brave and strong. Amen.

Thursday April 28, 2005 8:27 AM CDT

Well an amazing thing happened today. I got to the hospital about
10:00a.m.,
expecting to see Joshua off to surgery, and instead a nurse came in the
room
and said that his new room was ready. I had to shake my head because,
that's
not at all what I was ready for. Needless to say confused but very happy.
We still don't know why the doctors changed their minds from bad to good,
but as long as it's the right thing to do, I'm all for it. So Joshua has
been moved to room 411 at Children's. They started pump feeding him again,
with limited success. He looks great, his stats are great, his chest
drainage is way down and he's getting restless. All good signs. I think
the
doctors need to see his chest tubes dry up. That's what we're waiting for.
It seems to me this change in thinking this a.m. is a huge prayer
answered!
Thank you Lord! I dreaded the thought of Joshua having to be reopened and
then having to recover again. YUK.

Debbie's going to stay at the Ronald Mc Donald House another night or 2,
and
then she'll probably sleep on the couch in Joshua's room. Gotta keep an
eye
on that little guy, he's in a "big bed".

Thank you all for the food, rides, prayers, cards, fresh baked bread, and
blueberry cheese cake. ( I think we're getting spoiled)

Mike.

Monday, April 25, 2005 9:32 PM CDT

Joshua continued to have a good day...extra tests made it a busy one for him. This morning, he had an echo of his heart, unfortunately having the 4 chest tubes still in place makes it impossible to get any kind of a picture of his little heart. The drainage from the chest tubes has decreased quite a bit, so that's a big step forward. This afternoon, he had an EEG to check for seizure activity. Nothing very alarming showed, so we will wait for the doctor to read the results tomorrow. His staring episodes were not as apparent today and he was much more alert. His left-side weakness is very pronounced again, especially in his hand, but this is to be expected when his body has gone through such a trauma as this.

Joshua was much more himself today as he was in less pain and felt more like interacting with mommy. We played patty-cake, looked at books, and watched Animal Planet on TV. He sent off, Scott, his respiratory therapist with an "all done." He charmed his wonderful nurse, Diane, with a "thanks" and made her day with a "muuh" kiss at the end of her shift! What a guy!! We are so blessed and God is so good.

Monday, April 25, 2005 2:28 AM CDT

From what I've been told, Joshua had a fairly good day. Before Matt and I left the hospital for home at 2:00 Sunday afternoon the nurse had already removed Joshua's Femural artery IV and his foley catheter. It was quite traumatic for him as the surgical team had stitched the IV so tightly to his groin that it took her a long time just to get at the stitches to remove them and the 3-4" long IV from the artery. At least the crying helped to clear his lungs a little more, but it was so hard to see him in such pain. He truly is a courageous little boy and none of us can even imagine the pain he has gone through. I think it's easy to say we have no clue when it comes to pain!
After the IV and catheter removal Joshua received a good scrubbing and promptly fell asleep rather comfortably. He had also guzzled down 6 oz. of skim milk before we arrived so he had a nice, full tummy. Hearing that he has been taking in some real food by mouth is fantastic news since Joshua hasn't had any desire to eat anything by mouth for months now, which could be a little bit of a psychological problem due to his everyday episodes of vomiting. So, introducing foods to him again...and him actually taking them....is quite good news. The nurses also got him to drink some more milk and later on some juice. Actually he drank his 24 hour allotment within hours so he was limited until today. Joshua was so thirsty after days of receiving nothing to eat.
Daddy brought Stephanie, Tyler and Bryan in around noon and we all went down for some lunch before Matt and I left for our return trip to New York. It was very difficult to walk out of that hospital room knowing he would be there for some time yet, but I was a little more comfortable leaving knowing he was on the road to recovery and feeling much better than he had been in the days before. I guess it all takes time. The neurologist that examined him this morning said that an adult having gone through a similar heart procedure wouldn't even think about moving around as much as he is at this point. Children make wonderful, speedier recoveries, but it is so difficult to see them express their pain. She also indicated that his staring doesn't appear to be seizure activity since he does respond and blink if you touch his nose or wave your hand in front of him. It could just be all the trauma his little body has gone through this past week.
Well, Matt and I returned home at 3:00 a.m. Monday morning and it's time for me to get a little sleep before work tomorrow. I'll keep you all posted as I get more news in the coming days. God Bless and keep your thoughts and prayers coming......

Saturday, April 23, 2005 11:50 AM CDT

Mommy and Auntie Lynn arrived this morning about 10:00 a.m. to find Joshua awake but not in a very happy mood. The nurse said that Joshua wasn't too happy with her and needed a dose of Morphine to calm him down. They had removed the IV in his hand but he is showing a little weakness in the left hand. He is definately not liking the IVs in his feet. His pedialite feedings have been discontinued for now as he still has more drainage than they want so they are trying to reduce his fluids. But....he can still have his ice chips in a bottle and that seems to make him happy when he gets irritated and uncomfortable.
The nurse this morning asked about seizure activity as she noticed that he seems to be staring quite often. We were thinking that that might be due to the morphine, but it could be slight seizure activity. So they are going to watch that a little more and maybe get in touch with the neurologist for evaluation.
Joshua is also getting some pneumonia in his lungs so they would like him to try to wake more and move around more as his body will tolerate the pain. Mommy asked if it would help to hold him a little and the nurse said if he is held like a baby and not in an upright position. When Joshua coughs it helps to clear his lungs and maybe we can get a more productive cough out of him.
That's all the news for now until we have more... Love and prayers and thanks for checking in on Joshua's progress.

Friday, April 22, 2005 9:21 PM CDT

Hello to all. We hope this webpage will be helpful to keep you all up to date on Joshua's progress. He had a very good day. He was his eyes open on occasion with very little pain meds during the day. All of his levels were good and his chest drainage is subsiding but being watched carefully. The doctors are pleased with his progress at this time.

His oxygen levels are the highest they have ever been which shows in his skin coloring. He has the cutest little pink cheeks and nice warm hands and feet. He even attempts to wave bye-bye when people are leaving and "all done" when his procedures are finished.

We will keep you posted and appreciate all you thoughts, concerns and continued prayers, they are definately working. Will post some pictures ASAP.......

Friday, April 22, 2005 9:15 PM CDT

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