Monday, May 31, 2010

Matthew has had a busy morning filled with labs, an echo, a chest xray, doctors rounding, occupational therapists etc. etc. I think all the medical personnel is trying to get out of here early for the Memorial Day holiday. I can't blame them! Matt's at work today and I hope he gets done early too.

Joshua and Luke left today to visit their Aunt Liz and Uncle Kurt and their cousins in Arizona. I miss them so much already. My Dad flew with them early this morning and is turning around and flying back to Utah hoping to make it in time for the family picnic. Thanks Dad! Volunteering to fly alone with two children is a big sacrafice that we really appreciate. I miss being with all of my children at the same time! I can't wait for the day that our family can all be together at home again!

Matthew is going in for his heart catheterization tommorrow at 7 am where they will take a biopsy of his heart to test it for rejection. If everything goes well they should be able to send Matthew home on Wednesday. However, his echo today showed that he still has some fluid around his heart which the Cardiologists continue to monitor. Extra fluid can be a sign of rejection and as one of the cardiologists told me today "rejection is like a shark that is always looming in a dark corner somewhere." That statement was really reassuring. Matthew has also had a hard time getting his Prograf (anti-rejection medicine) level up to where they want it. I'm sure these issues will need to be sorted out before discharge. As we well know, discharge could be days or weeks away and we won't know for sure until the day before or morning of.

I'm a little nervous to bring Matthew home. Yesterday Matt and I counted at least 10 drugs Matthew is on. Prior to surgery Matthew was on 4 and just keeping up on prescription refills was a job. 10 drugs needing to be available and administered on a strict schedule, 3 kids, managing doctor appointments, and running a house during the summer seems a little overwhelming to me. I'm sure we'll get a system down that will work out just fine. Thanks Liz, Kurt, and Jen Johnson for helping with the boys so that we will have some time to get things organized before Luke and Josh come home.

Yesterday was my first sacrament meeting back in our ward. The love I felt there from so many of you was so comforting. Sister Olsen gave me a carload (literally) of gifts and goodies from all of you and we are so grateful for the outpouring of love and support. Thanks to our family, our ward family, friends, co-workers, neighbors and to everybody who has helped us in so many ways. We love and appreciate you all!

Sunday, May 30, 2010

As a child my parents would drag us around on Memorial Weekend Sunday to visit the grave sites of our great grandparents. As I grew into adolescence I remember always balking at the idea of spending an afternoon visiting the sites of dead people that I never knew. It wasn't until one particular afternoon when we were driving by the Murray Cemetery and I commented that if I knew someone who was buried I wouldn't mind visiting them. The next day we received a call from my brother-in-law informing us that my sister Anne had died in a car accident. Memorial day weekend has taken on a new meaning since that time.

This weekend I can't help but imagine how the family of Matthew's donated heart must feel. We feel like we have a pretty good idea of who they are and the circumstances of his death. Salt Lake is a relatively small place and word gets around. Our hearts go out to them. Our blessing is their tragedy. It would take a lot of faith and hope as a mother to give away a young child's organs. There are not words to describe our gratitude. There is not enough thank yous to express the appreciation we have for them. My prayers are with you this day. If it is any consolation: Your son's heart is amazing. Of all the complications we have had here in the hospital, not once has it been because of the heart in Matthew's chest. Our hope and prayer is that it can last a lifetime. It was the most precious gift you could give our family. Thank you.

Matthew is doing really well. Last night it was like someone had dropped a few too many quarters into his slot. He was laughing and carrying on like a clown. He even had a full on conversation with Chrissy over the phone at 10:30 pm. Thankfully at 11 he passed out. I passed out next to him. He slept better than any other night here in the hospital yet. He didn't wake up until about 8:00 am. He called out crying several times for Mommy but every time I got up he was still asleep. I wonder what kind of dreams go through his head when he rests.

This morning's highlight was the ride in the "car" around the hospital. He allowed us to put a mask on him and away we went. We saw the full size Spider man, blew bubbles outside on the outdoor patio, and played the piano in the 3rd floor lobby. In hindsight it was probably a mistake because containment will now be that much harder. For the moment he bought the excuse that other children needed a turn.

He ordered "Daddy Juice" (coke products) for lunch with chicken nuggets and 2 slushies. He was in heaven. He again passed out and is taking a nap.

I just want to thank everyone again. The pure unselfish service provided us has been overwhelming. My thoughts are with all of you as you are remembering loved ones this weekend. Robert and Gail, Randy and your family, Mareid and your family, Grandpa/ma Black & Sperry, Hedgepeths, Brent and family, Larry Jr. . . and many others. We look forward to the reunion on the other side and pray to live worthy of the blessings I know that we will one day all want.

Saturday, May 29, 2010

My wish came true last night when I heard Matthew call out for Deeda. What a simple gesture with an enormous impact. It was so good to see him again. I left the hospital on Wednesday afternoon to attend Joshua's last baseball game and because I was planning on working on Thursday. To come back to a giggling, talking little boy was wonderful. Despite his grumpiness and reflexive reactions it was certainly an upper to my day.

Overall, Chrissy tells me that he was pretty grumpy yesterday. They warned us about days like these. They seem to have one good day: wear themselves out - then the next day is like living with Frankenstein. Last night we brought all of the boys up to visit Jr. and to have a sleep-over in the trailer. Needless to say, at about 8:00pm Matthew got a finger in his nose and pulled out his NJ tube. Now it is a very expensively placed NG tube. His reponse: Sorry Mommy. He is so sweet when he is himself. Can you blame the guy for trying to pick his nose?

The night was again frustrating. The over-achieving tech was either trying to check out my hot wife or doesn't understand the value of a rested child. Either way, they really need to learn the power of a drug called "sleep". It was an in and out kind of night and the morning always comes too early.

The changes are starting to be seen on Matthew. His face is more full and his cheeks are puffing out. It is probably too early for this to be the prednisone but who knows. Maybe it is just nutrition for a change. He is definitely getting stronger and healing from all of his surgeries.

I want to personally thank all of my partners and all of the people that i work with at Utah Valley Regional Med Center. The response that I received in going back to work was overwhellming. Thank you for supporting me and helping my family to make it through this ordeal. I was on the brink of tears most of the shift. You have all been amazing and I am thankful for that. I cannot believe how many people had read this blog and were genuinely concerned for our family. I love my work and your hearts have made UVRMC and even better place to live and work. Thank you.

Friday, May 28, 2010

Matthew had a rougher night last night. I don't know why, but he seemed a lot more restless than the night before. He is also more irritable and anxious this morning. I guess post surgically there are lots of ups and downs. Today must be one of his downs. I was just looking forward to another day of laughing together while playing peek-a-boo and trains.... Hopefully later today he'll be more playful when his brothers and Dad get here.

The highlight of the morning for me was when I started naming all kinds of choices for breakfast Matthew said yes to pancakes! He actually ate a few bites and kept the pancakes down. At least he is motivated to eat again- I think his appetite will continue to improve and we will make baby steps every day.

The transplant team is trying to make some changes with his anesthesia and painkillers while planning for his cardiac catheterization where they will take a heart biopsy on Tuesday. I don't think anybody wants a repeat of what happened last time when he was waking up from anesthesia. One of Matthew's nurses from the CICU called me this morning and said "this is Matthew's WWF nurse" because we literally spent 2 days together trying to keep him still so he wouldn't rip out lines. We will keep hoping and praying for better results next week.

In the meantime, we are overwhelmed with gratitude for the many blessings and miracles that have taken place in our lives. We know Heavenly Father loves us and baby Matthew- there are evidences of that taking place daily.

Thursday, May 27, 2010

Matthew had a great day today! He belly laughed for the first time this early evening and it made me smile from the inside out! Tommorrow is Josh's last day of school so the whole family will be together for the day. I can't wait!!! Matthew absolutely lights up when he sees his brothers.

Today the cardiologist told me that on Matthew's latest echo it showed some fluid behind his heart. They are going to continue to watch it and she was hopeful they would not have to go in his chest to drain it. I don't think I can bear to let them do open heart surgery three times in one hospital stay- everybody pray for this issue to resolve without intervention. By the way, Matthew's cardiologist is Melanie Everitt who apparantly was highlighted on the news in Utah recently for being involved with a transplanted heart that was not compatible with it's recipient's blood. No- this was not Matthew. Matthew's heart is compatible with his own blood. A couple of employees at PCMC who know Matthew had a heart transplant told me they saw me on the news the other night so I thought I would clarify.

I hope everybody has a great Memorial Day weekend. We appreciate everybody's ongoing love, prayer and support. We love you all and wish to thank you for everything you've done to strengthen our family this past week.
It's Thursday morning and things are improving here in the hospital. The hospital staff switched some meds around and have blocked off intervals of time when Matthew can nap and sleep at night. Matthew's nurses are like bouncers sitting by his door blocking many who try to enter while he is peacefully resting. Matthew's ability to sleep has really made a huge difference in his behavior...surprise, surprise!

Matthew started communicating by using simple "yes" or "no" answers to questions he is asked. I think he is starting to feel more secure with his environment now that he is not being tortured every day. We are still having issues with keeping food down. He has an NJ tube so he is getting his oral meds and some nutrition that way. Every time we try to feed him orally, he throws up. Our goal for today is to give him pleasant things to taste to help him overcome his aversion to food. Now that many of his tubes and lines are out, I put him in his Mcqueen pj's and he was super happy.

It feels wonderful to be able to care for him like a real Mom again. I enjoy each moment I have with him! I love each day because I feel like every morning he continues to become more and more like the sweet little Matthew we know.

What we are hearing at this point is that he will have a heart biopsy on Tuesday and if all goes well he could be home as early as Wednesday. We'll see.... there are lots of ups and downs in the hospital and you never know what will happen (and when..)

Wednesday, May 26, 2010

It is early Wednesday morning and we have officially been in the hospital for one week now. Although we have been at the hospital continously we haven't actually stayed the entire night with Matthew because he had one on one nursing while in the CICU (cardiac intensive care unit). We were told that he was doing well and sleeping while we caught a few hours of z's. I now have my doubts and I have an incredible insight into why he is behaving the way that he is: PURE EXHAUSTION!

He is now on the third floor and because the nursing ratio is like 1:4 we are staying with him 24/7. There is a bed in the room and if he goes to sleep, there is no reason why we can't go to sleep. WRONG! Nana left at around 9:00 pm. We both actually got some sleep from 9 to 11 (2hrs worth). Then they came in to do vitals and give him his meds. He threw up. We changed the sheets, the blankets, washed his hair, and put on new pajamas. That took an hour. At midnight the foley had to come out and that whole ordeal took another hour. It was now 2 am. They then started his 3sequential medications that have to be run via IV. Each one ran over an hour. The machines beep like a crazy alarm when they are being loaded, 5 minutes before they end, and then when they end. Then they have to flush the medications with some saline and the whole beeping process goes on again. Finally at 5 am Matthew and I fell asleep. At 6 (before I was completely awake) I see the floor tech taking off all of Matthew's EKG leads so that he can go down for a CXR. Matthew was awake again and crying because, well let me see: HE WAS TIRED. I refused the cxr and told them it could easily be done during the day when he was awake. As soon as I refused the Xray the resident comes in to examine him and his biggest question: How is Matthew's mental status today? Well let me tell you ....HE IS EXHAUSTED! I ask him to please arrange the schedule so that he can atleast have 6 hours of uninterrupted time. He tells me he will work on it and that Matt should be able to sleep until 8:30 when his morning meds are due (ie. we start it all over again). No sooner does he leave when the nurse walks in and tells me he has morning labs at 7:30.

What an eye opener of a night! If this is how his last week in the hospital has been I can sum it up really easy: Sleep deprivation, starvation, disorientation (drugs), and pain. Sounds more like a week at Guantanamo. Its amazing he is alive. Its amazing he is healing.

Final thoughts: Obviously their do not disturb sign needs larger font. Oh, and lets just hope that he pees today. Another 3 hour urology-Foley fight just doesn't sound very appealing today.

Tuesday, May 25, 2010

Good news everyone, Matthew began speaking again today. Leave it to good old Lightning McQueen. We had his Mack truck out and Chrissy asked if it was mack and Matthew said: Yeah (in only the voice that he has). He then started watching the movie and suddenly remembered the names of all of the characters. He still hasn't said Deedaa but he has said "Mommy" (Grandpa heard it). We are thrilled that his mind has made it back to earth.

We also made some more progress in that they transferred him out of the CICU. He is now on a post surgical floor (room 3085). He was scared during transport and called for Mommy. That made Chrissy happy. His room is much more spacious. Has a giant window overlooking the salt lake valley and a private bathroom, shower, and bed.

Our prayer is that he will continue to improve.
Good morning. It is Tuesday May 25th and we are almost 1 week into this ordeal. One week ago Matthew was walking around talking about Daddies Big Big Red Truck and wearing oxygen around the house. Thoughts of receiving a heart were still very very distant in our minds.

Matthew is doing a little bit better this am. It seems like he is more alert and more aware of what is happening. He is still not talking but the muscles around his mouth are twitching and he is trying to smile. He just seems a little more content and the look in his eye doesn't seem as lost. He certainly recognizes Chrissy and me. He also slept pretty well again last night. He is still paying the sleep debt he owes from late last week.

He has come off of oxygen completely and his sats on room air are 98! Can you believe that? He hasn't had this good of oxygenation since he was born. Who knows maybe he has oxygen toxicity. The only lines he has now are his NG tube (nasal-gastric) to feed him and 2 Iv's and his Foley.

They are going to transfer us out of the ICU. They told us that they don't want him to get ICU psychosis . . .isn't it a little late for that? We are hopefull that they will give us the presidential suite on top of the hospital with 360 degree views of the mountains and valleys. We also need to get on top of some physical therapy. How is Matthew going to be the next Sean White (he had tetrology of fallot) if he can't walk?

If you have any questions that you would like us to address, please leave a comment on the blog and we will try to address them. Thank you again for supporting us.

Monday, May 24, 2010

Matthew is about the same this early evening with a few improvements. He is moving his limbs more and tracking with his eyes more. He is still not talking at all or responding with smiles. The medical team continues to watch him throughout the next 24 hours and then they will decide if they want to do an MRI tommorrow to further rule out stroke. At this point we are all still hoping that this dissassociation is an effect of all the medications his been on. It's really emotional watching him react this way. I miss the sweet personality of our little Matthew. I am prayerful that he will return to us. After an encouraging day, I think he will!
It is Monday morning and another week is ahead of us. It has been raining all night and this morning we woke up to snow! It is may 24th for crying out loud. All of our beautiful petunias are going to be dead! (Isn't it weird to think about the things we worry and think about?)

Matthew is about the same today. The lights are on but it doesn't seem like anyone is home. He is actually a little bit better. He is moving more and when they pulled his one remaining mediastinal tube out he actually flinched and tried to cry. Can you imagine what it must be like to be in enough pain to cry but not be able to? There were tears in his eyes. His epicardial pacemaker leads were also removed as was his arterial line. The only lines remaining are his Foley (if he could pee on his own that would come out too), a PICC (peripherally inserted central line), a small peripheral IV, and his NG tube. It is so nice to be able to pick him up and hold him. He is in Chrissy's arms as we speak and has fallen asleep again.

Our working diagnosis for the mental status change at this point is medications. For those of you in the medical field it is like his speech is locked in but everything else is okay. He got his last dose of thymocyte yesterday . . . it is a drug isolated from rabbits and as far as I am concerned reminds me of the Wii game my son Joshua plays: Rabid Rabbits. I hope that it is as simple as a medication that just needs to wear off. What a terrible thing to have a new heart but no brain. I just want him to be better.

We also heard some more good news this morning regarding the trailer spot that we are in. Originally they said that we could only have it for 3 nights. Amazingly and miraculously Bishop Flannery met someone as they were pulling out who said that they were leaving about two weeks early. Our first text message this morning was from the Bishop and we now have a place to stay until the 31rst. Thank you Bishop. You have gone above and beyond and another tender mercy has been provided.

The whole experience has been an amazing sequence of miracles and blessings intermixed with challenges and stress. My prayer today is to hear Matthew call out for Deedaa one more time. Only time will tell. We love and appreciate all of you. Thanks for your support.

Sunday, May 23, 2010

We just wanted to give a closing thought for the day. Overall today was a good day. We are making progress. No 4 hour crying spells and no lost Foley catheters. Matthew has been peaceful today. He is somewhat dissociated. By that I mean his eyes are bright and shining but we couldn't really get him to talk to us or interact with us. When they pulled his chest tubes out he barely even flinched. They were so worried that they took him down for a CT scan of his head tonight to make sure that he didn't have a stroke. They didn't see a stroke but they did see a small subdural hemorrhage. They have now stopped his heparin and we will see what they do with the anti coagulation tomorrow am.

Seeing his brothers was an added bonus today. Finally, when we left his room this evening he was asleep and that is something that he hasn't really done in about 40 hours. Here is to sleeping through the night and calling for MeeMaa in the morning!

Thank you to the surprise visit of Susan Morgan (and the support of her family that sent her here). We have the best family in the whole world. Thanks again to our Ward for fasting for Matthew. Without parents and siblings we would be hurting a lot more.
We just wanted to thank all of you for your words of kindness, your prayers, and your support. A big thank you to our fabulous ward for the ward fast! Matthew has had a great day (I'm keeping my fingers crossed). He is fairly mellow and seems to be comfortable. We are working out a few minor issues (like not eating and throwing up what is fed through his NG tube) but after the past several days today is much better. We have been rejuvenated this Sabbath day as Matt and I were able to attend a small sacrament service at the hospital- I got tears in my eyes because I realized our own ward was fasting for our family at that moment and I was filled with gratitude. Also, Joshua and Luke have been able to visit Matt and me at the hospital thanks to the Bishop's kindness in lending us his trailer. The kids think the trailer is the greatest thing ever. Joshua and Luke were able to visit Matthew today for the first time which made them so happy. Matthew was really happy too! Though mellow, you could see the joy in his bright, blue eyes. Today is a much more encouraging day. As we know, there are lots of ups and downs here in the cardiac ICU, but we are enjoying this up! Thanks again to everybody for buoying us up this day!!!
Well Matthew is still in the zone today. His eyes are fixated on the TV and he hasn't slept in 36 hours. At this point I think he is in frank steroid/medication induced psychosis. Poor little buddy. On the happier note, his two chest tubes came out and that hated right atrial line (who puts a line directly through the wall of a new heart?) I have never seen that before and it came out also. He still has a mediastinal drain in but that should come out later today. We can then pick him up. Not sure that will help anything though. Finally, they said that as soon as his mediastinal drain comes out that he will be transferred out of the ICU. I am sure that they can't wait.

I asked the Dr. about the mental status and he said that he would likely be this way until he gets home to his own bed, his own home, and his own food. Lets pray for a 2 week stay and not a 4 month stay like the last one.
After a wonderful day yesterday, last night was a polar opposite. At shift change (7-8 pm)they kick you out of the room both for your sakes and for theirs. The told us that they gave Matthew a bath and that he was doing very well . . . we walked in anticipating another great night but it ended up as one of the hardest moments I have ever had to bare in my life. I don't know if it was pain, medication, ICU delirium, frank psychosis or what but Matthew was miserable. He cried and wiggled in agony for 4 hours. Non stop. Inconsolable. He kept saying: meemaaa, deedaa, I'm scared and Owe, oweee, oweee. It was the single worst thing that I have ever seen in my life. It took two hours for them (although it felt like an eternity) to get a senior urologist up there to place a foley catheter (The jr. on call didn't know what she was doing). The staff didn't know what to do. I finally lost it and didn't know what to do. I have never seen anything like it in the 10 years that I have been doing medicine. It gave new meaning to thought of God watching his son suffer in Gethsemane. It was unbelievable. I was holding him, Chrissy was holding him, Nurses were holding him down and it wasn't working. Tears were falling out of my eyes as he kept yelling for me and chrissy and we consistently kept telling him that we were there. It was like he was trapped in another dimension.

It got so bad that I had to call for backup. Thank goodness for Parents, Older brothers, and Sister-in-laws. I could not have made it through last night without them there. I cannot imagine Hell being anything worse than last night.

He remained inconsolable and the nursing staff asked us all to leave about midnight. Somehow, she was able to focus his attention on some crazy midnight cartoon on the Disney channel. The rest I don't even really want to know because I was either leaving the hospital of going to be in the trailer. Physically and emotionally I was spent. Between the steroids, anti-rejection meds, pain meds, lack of sleep and food. Matthew Jr. must be out of his mind . . . literally. I haven't been in his room yet today and I am a little bit scared. I hope he has ended his "bad trip" and found his way back to earth.

I just want to thank everyone for following the blog. It sure saves us from answering the same questions over and over again. It is a roller coaster adventure that changes direction without any warning. We know that Matthew is in the Lord's hands and that this will only be a moment in his eternal existence. It is still hard.

Saturday, May 22, 2010

So far things are a little better today. Extubation went much better than the first time. Our nurse is awesome: experienced, on top of things, and willing to go to bat for the "Booja". He drank his first bottle in almost four days. He is still in a lot of pain but he is starting to talk more. It is the saddest thing in the world as a parent to hear you child yell over and over: owe, owe, owe, mommy, owe, owe, owe. If only there was an easy way to curb all pain and make patients happy when they are miserable. Oh, he just pulled out his foley (luckily it didn't have a balloon on the end of it.) Gotta go.
He told us that the operation had been a success and that our timing in having the transplant completed was perfect. Matthew's heart was about three times bigger then it should have been and very ischemic. He said that Matthew was a step away from falling off the cliff. We were also lucky in the fact that the transplanted heart fit just perfectly inside Matthew's chest. They didn't need to leave his chest open or anything and were able to close his skin without problem. The surgeon also showed us Matthew's original heart. Somewhat morbid and sad. It has kept him alive for two years and I am so thankful for that.

Thirty minutes after he left us we were able to go and see Matthew. Seeing your child lifeless and hooked up to a breathing machine is something I hope most of you never have to witness. In expecting the worst, he actually looked better than the last time he came out of surgery. He was alive. His new heart was beating, and he wasn't on so much support that I was in fear that the heart they gave him was a bad one. The tubes were of course coming out of everywhere: 2 tube around his lungs, 1 tube around his heart, 1 IV going directly into his new heart's right atrium, 3 peripheral IV's, 1 central line, a breathing tube in his mouth, a foley catheter to drain his urine, and an arterial line in his wrist. I guess he didn't have any tubes in his ears or belly button . . .

The next 18 hours were pretty easy. He was sedated and calm. It was Thursday afternoon now and they were weaning the sedation. Just so you all know, Matthew is generally the sweetest, easiest going kid in the world. But coming out of drunkenness he doesn't do well. The pulled the breathing tube out and it seemed like all heck broke lose. He was trying to pull at every line, he was trying to roll over, he was a hazard to himself. They tried everything they could to load him up with sedation without knocking out his ability to breath. It took four of us to hold him down for five hours until they figured out that the meds they were giving him were just making him more delirious. In addition to all of this, Matthew was having difficulty keeping his airway open after they took the breathing tube out and I had to hold his airway open with jaw thrusts for about 4 hours. It was very very frustrating. Our poor nurse earned her money and then some during that shift. He finally calmed down by 11:30 pm and we were able to get a little sleep. Once again, thank you to all of the angels that have been hear with us.

Friday was a step back because on their routine daily echos they saw a mass in his left atrium. They had seen it the day before but they noticed it was enlarging. He was also holding his urine so the foley catheter that had come out on Thursday had to be put back in, not by the nurse . . . oh no, Matthew is much more difficult than that, the urologist had to come in and put in a special curved foley. Dr. Kaza also came in and said that we were heading back to the OR because he wasn't sure what the mass was. Matthew was finally awake, alert, and requesting: McQueen Juice and Daddy's juice! He wasn't ornery and his hallucinations had gone away. Poof all of that went away. We were now facing another surgery, another 2 day set back, more risk for infection, etc.

The second open heart surgery went well. It was fast and what they found was that it was not an invaginated atrial appendage or a clot, it was fluid in the posterior pericardial sack that was pressing on the heart and it was a suture line that was a little more prominent than what they are normally used to. It was a long day and I had some words with the Dr. Kaza that I wish I could take back now, but as a father (and a physician) I had some really tough questions for him and the cardiologists. I guess that underlying all of this is my skepticism that he really needed a heart transplant. I am still trying to figure out why that bothers me as much as it does. I am not ungrateful for the heart but a heart transplant is not a cure. It is another form of palliation with many more risks and many inherent complications. I can't wait for the day when he can come home. I love hospitals but they are the scariest places in the world. . .and I work in one. I think I offended the transplant surgeon but I was acting as a father and a frustrated one at that. In the depths of my heart I really do appreciate everything that he has done for us.

Again Matthew was sedate, lined up, and on a breathing machine. We get to go through all of the first two post op days again. We have narrowed some of his delirium down to benadryl (so he won't ever be getting that again) and we have switched to synthetic opiates because they have less breakdown products that are pyschotrophic.

It is now Saturday morning and we are back at it again. Our bishop came to the rescue and brought his camper up for us to sleep in. We are right next to the hospital and less than 30 seconds from Matthew's room. I got a great night sleep last night (the night before I was on a hard floor in a sleeping bag . . .I guess I am looking for a little sympathy here). To have a place to go and relax is wonderful. It was a design flaw to build a 42 bed ICU with only six parent sleep rooms. If I were a philanthropist I would use my money to 1) first try to buy the Kirtland Temple from the RLDS and 2)Build Utah a new state of the art children's hospital where every ICU bed had a parent room with it. Who wants to ever leave their children when they are in the icu?

I just spoke with Dr. Kaza and the plan for today is to pull the breathing tube out, wake him up again, start feeding him (It has been 3 and 1/2 days since he ate), adjust his PICC line, and hope that we don't have another day of "Wrestlmania" with a two year old. Tomorrow he said that we would be pulling out his chest and mediastinal drains as well as that hated right atrial line.

As for Chrissy and I, we are surviving. We have been here before and we would do it again for any of our children. For one day at home playing with trains and Misty (the dog) it will be worth it. We are so thankful (cannot say enough) about our parents, family, partners, ward, work, and our angels on the other side (Anne we know you are on assignment here). Thank you sooo much.

Friday, May 21, 2010

Matthew was born with a congenital heart defect known as Hypoplastic right heart with pulmonary atresia. We found out about his condition before he was born and 3 out of 4 different medical centers told us that we should transplant him at birth. Dr. Ilbawi of Chicago IL convinced us that transplant was always an option but that if we could by him 6-10 years with his natural heart that he would be much better off. Well, we got 2 and 1/2 years out of his heart. Since moving to Utah and really since November of 2009 Matthew just hasn't done well. He sleeps most of the day, he doesn't eat, and he hasn't gained any weight for about six months now. He got RSV in January/February of this year and since that time has had to be on ever increasing amounts of Oxygen. We finally convinced his cardiologists that something was wrong (despite a normal echo just six months ago) and had an echo. That was early March. Well the results that we got were not positive. His Pulmonary artery pressures were high because he was in diastolic heart failure. To make it simple, he was in heart failure and fading fast. Their solution was once again to put him on the heart transplant list. We have gone through the necessary steps to do that and about 3 and 1/2 weeks ago he was officially listed for a transplant. This has been a conflict with me because Chicago has been pushing us for better medical management with Bosentan and Sildenafil.

Well much earlier than we anticipated and still to my utter shock, we received a call on Tuesday night May 18, 2010 telling us that they had a "great heart" for us. I am still in shock. I was still grappling with the fact that he was on the transplant list let alone deal with the fact that he now had a heart. As a father, you always want to do what is best for your children. One of the hardest decisions that I have made is telling the transplant coordinator that we wanted the heart. That is where this story kicks off.

We had one hour to get to the hospital. Chrissy and I were both panicking. Luckily our ward had us well prepared. We through together a suitcase, grabbed a sleeping baby and headed to the hospital. We arrived at about 12:30 am Wednesday. It was a kinda "hurry up and wait" type scenario. They drew what seemed to be half of Matthew's blood volume (and reassured us that they would just transfuse him during surgery) and then let us try to get some rest in a loud, crowded Hospital bed. Lest I forget: Larry Curtis (my father-in-law)came to the hospital and helped to give Matthew a blessing. If you ever run into us in person ask about the blessing and we will be happy to tell you about some of the incredible impressions that we had. Needless to say, we waited anxiously for the surgery to start . . . it did at noon.

We waited ... special thanks to all of those who were here, called, taking care of our home, praying, putting Matthew's name on the temple lists etc... We were not alone. One funny thing happened as he was leaving for the OR. The anesthesiologist was pushing a little versed (a sedative) and it was burning through his IV. He asked if I would do it. It still hurt when I did it. I then asked Matthew Jr. if he wanted to do it and he grabbed the iv and just slammed it in. He then reached out his hand for his guardian angel and was taken from us into the OR.

At nine thirty pm his surgeon, Dr. AK Kaza came to speak with us about the surgery and its results.
Dear Family and Friends,

In an attempt to better disseminate information about the ongoings of our family and the adventures that affect us everyday we have created this "blog" to help communicate with so many of you that I know care about us. Its need was obviously brought about by the recent transplant our son received. Everyday while he is here in the hospital, we will try to update it so that you can be a part of our challenges and accomplishments.