TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Day Two at Sick Kids - Tuesday, December 2, 2008



"Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning, Great is Your faithfulness." Lamentations 3: 22,23


After a solid heavy 7 hour sleep, we have awakened to more of God's great mercies. Things seemed to hit us with a ton of bricks this morning about the seriousness of our baby boy's condition. But again we see God's mercy and compassion. It kinda hit me while I laid awake at 7 am that the questions that kept being asked of us yesterday were, "How many ultrasounds did you have?" and "Did they detect any heart problems in your baby at these ultrasounds?" The answer is of course, no. The lady whose daughter is in the bed next to Tyson had her baby's heart problems detected at an ultrasound while she was still pregnant. She actually delivered her baby at Mount Sinai and her baby was immediately transferred to Sick Kids within hours of her birth. She spent her entire pregnancy worried sick about her baby's heart. I couldn't imagine having to endure a stressful pregnancy like that, and obviously God knew what was best for us at that time too. He knows what we want before we even ask!

Tyson is doing well today. He is in the Cardiac Critical Care Unit. He is doing well, breathing a lot better. They didn't end up having to do a CPAP or insert an intubator last night as he is getting so much stronger. His bilirubin levels went down to 240 today so he is no longer undergoing phototherapy. His heart rate stays mostly in the 140's, his saturations (oxygen levels) are almost always in the 90s now and he is receiving 11 ml/hr of saline solution now (IV - food). He is stable and they are slowly preparing him for his surgery this week. He had a brain and heart ultrasound today to make sure it is safe to proceed with surgery (to make sure there are no blood clots in the brain first, etc.) and we actually got to hold him too! He still spends a lot of time sleeping but the nurses say he is quite peaceful at nights now, unlike how he was in Orangeville Hospital.Tomorrow the nurses plan to have me give Tyson small amount of breast milk, either by syringe or bottle, depending on his energy level. It will most likely still be till after surgery before I can attempt to breast feed again. In the mean time I continue to visit the "milking parlour" every four hours to keep up my supply.We almost lost our parent room today for following hospital procedure. The proper protocol is never to assume you will have the same room from day to day but to hand in your key in the morning and ask for the same room that night. Then they are supposed to give you the same room again, but there was a misunderstanding and we were almost left roomless tonight! Long story short, we have a place to stay and it's all good again.


We met with Tyson's team of experts this afternoon to talk more about his planned surgeries and approximately when they will take place. It turns out that the first surgery will most likely be this coming Thursday or Friday! We hope to know an exact date and time by sometime tomorrow morning when we meet with the surgeons who will perform the surgery.


When we met with the cardiologists again this afternoon, they told us about their plan for Tyson's surgeries. The plan is to have the first sugery this week sometime, the second surgery when he is about 4-6 months old (depending on how well he recuperates from surgery #1) and then his third surgery can wait until he is between the ages of 2 and 3. This is better news than what we originally understood about 3-4 surgeries in the first 4-6 months of life!


We are excited to inform you that that if all goes well and Tyson recuperates from surgery #1 well, we can expect to go home between surgery #1 and #2! However, it would mean weekly appointments back to Sick Kids to check up on his heart and have additional echocardiograms to make sure things are going well.


There is a big decision to be made about surgery #1 though, since there are two options for this first surgery. Without going into too many confusing details and technical names, the "final final final" result of either choice will be mainly the same, but the path of getting there is different.


The first option is for surgery #1 to be a less invasive surgery (not open-heart) but it gets less corrected/accomplished immediately. It also is a newer surgery that has not been performed that often by the surgeons here. The reason some parents choose this option is because it isn't as risky on such a small infant as option number 2.The second option is an open-heart surgery (they stop his heart and he breathes by machine during surgery) but will correct two of Tyson's heart conditions in one surgery. It is also the more common of the two options, and the surgeons are more comfortable doing this one because they have performed it many times. They have assured us that they are very good at what they do.


This is a difficult decion for us because an open heart surgery on such a young baby will obviously present more risks than the less invasive surgery. We pray for God's guidance as we make this decision. We are meeting with the surgeons in the morning to go over potential risks of either surgery. The cardiologists are definitely swaying us towards one way and we are meeting with the surgeons tomorrow to get a feel for what they think too. We don't feel very qualified to make a decision abou this and pray that God will guide thier hands whatever decision we choose. We will keep you updated. (Hopefully I can get that blog started soon but I am having technical difficulties!)


As for recuperation times, it can be expected, based on how well other cardiac infants have recuperated from these same surgeries, that Tyson would spend about 1-2 weeks back in Cardiac Critical Care Unit (with no visitors under age of 12) and then he would move to floor number 4 in what's called "Step Down" (a recuperation/observation room - where his brothers and sister could finally visit!) and then from there into a private room under our care for a few weeks before going home. So yes, in answer to many of your questions, Tyson can be expected to go home 3-4 weeks after surgery # 1. YAY! Hopefully that baptism gown will still fit! LOL


Many people here have commented on "how well" we are taking things. (They don't see us behind closed doors or when we pour our hearts out to God in prayer!) We are at peace that all things come from God's Fatherly hand. Yes we have our times of worry and anxiety, especially fear of the unkown. This is definitely not how we pictured spending the first few weeks of Tyson's life but we know that God knows best. We also consider this a time to rejoice over what God has done for Tyson, in giving him options to fix his heart problems, and giving the surgeons wisdom and steady hands to perform these many operations, and for the technology to perform them with great success rates! How good and gracious is He!


Some of you have asked about visiting. We would love to have company at any time, night or day! The parking here is expensive though, $4 per half hour, $30 maximum. We have purchased a two-week parking pass (for the price of 3 days) so that we can come and go as we please without worrying about the cost so much. Please call ahead and we can let you know where you can find us. Brian's cell phone number is. It is actually a work phone but we will have to make it up to Richard once we go home! It is convenient to have so that the nurses or other specialists can get ahold of us wherever we are. It is a big hospital and we want to know when there are any changes in Tyson's condition from any given moment. As for children, nobody under age 12 can visit Tyson at this time. Children are still welcome here and would definitely be able to be kept busy for a few hours here. The elevators are always a big hit, and there is a kids room to play in, as well as just walking around the various shops and amenities.


Because of Tyson's surgery on either Thursday or Friday, we aren't sure what we are doing for the weekend yet. I would LOVE to come home and attend church again but it will all depend on when the surgery will be, and how Tyson recuperates from it. In any case, Brian will most likely be going home and I could always attend Toronto church too so I don't leave Tyson too long. While in Cardiac Critical Care Unit, the nurse-patient ratio is 2-1, so we can confidently leave him overnight and he would be in great hands! Once in "Step Down" or in his own private room, he is more in parent's care and less in nurses' care, so the chances of going home are slimmer, especially since I hope to start nursing again shortly after surgery.


Well it is that time of night again and my eyes are starting to droop. We are heading off to see our little bambino again and then off to bed.Hope to get that blog thing figured out soon but we will have to see how it goes. Maybe if Melanie comes to visit tomorrow night, she can help me get it all figured out! LOL


Till next time,

Brian, Mel and Tyson

1 comment:

Melanie said...

I just LOVE that picture of Tyson sunning himself!! It still makes me giggle every time that I see it! What a CUTIE!!!!! Mel