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!

Pre-Cath Appointment, Sept 7

Tyson had his pre-cath appointment at Sick Kids today. Since he was just there for a cardiologist visit in early August, he didn't need to repeat his echo, ECG or chest x-rays today so all he needed was some bloodwork to make sure his counts were good to go for his upcoming cath on Monday.

Tyson had a pretty good day, spending most of his time in the CDIU (cath lab) waiting room watching tv and playing with toys. We didn't have a lot of tests for him to repeat but we did have to wait for the cardiologist who was held up in the cath lab for a few hours.

We did finally get to speak with a cardiologist fellow who will be aiding in the cath. She went over the procedure again (briefly - since we've done this 4 times already and we're old hat at it!) and all the risks involved. So we signed consent and Tyson is good to go for Sept. 12.

I also asked that a Child Life Specialist visit Tyson today and explain to him what was going to happen to him, so that he is prepared for Monday. It turns out we probably didn't need to go over it again since he just had a cath in June and he remembered everything that she told him from the last time. He knew exactly where to put the gas mask on the "heart buddy's" face and he knew that the IV would be in his hand when he woke up. When we told him he would go for a little sleep and when he woke up he could lay in bed and watch tv, he started crying a very sad cry and pointed to his chest and pleaded, "No owie heart!" Then I knew for sure he understood exactly what was going on and he was probably remembering his last open-heart surgery in December. We had to reassure him that this time they wouldn't be hurting his chest but he would just go for a long sleep and have some band-aids on him and an IV in his hand when he woke up. He did calm down after that but he is still awfully unsure about whether he wants this procedure or not. It's amazing what little ones can comprehend!

Brian and I can't decide whether we pray for them to close the fenestration this time, since that can lead to very serious complications if Tyson's heart and lungs are not ready to handle it yet, (and the only way to retrieve it is through an open-heart surgery;) or if we pray that they NOT close it, since that won't keep his O2 sats very stable over the winter months when he tends to catch every virus that flies around. Either way, we do trust the cardiologists involved in the decision-making process and even more, we trust that God will lead and direct them to the right decision.

So, if the fenestration closure is successful, because Tyson is sort of "borderline," we would most likely need to stay the night at Sick Kids for more observation. If they can't close it, we will go home within 4-6 hours after he enters the recovery room, and the surgical team will have yet another meeting to decide what the next step is for Tyson.

I myself really struggle with the "what-ifs." What if they close the fenestration and Tyson's heart and lungs can't handle it and he develops PLE? (protein losing enteropothy - a common side effect from fenestration closures that affects the way their bodies digest proteins; it requires life-long management.)
What if he goes into cardiac arrest during the procedure and he ends up with severe damage to his heart, and we have to stay in the hospital all winter long waiting for another heart?
What if he can't handle the fenestration closure and his heart and lungs start to fail over the next few months but we don't recognize the signs and symptoms?
What if he has a stroke while in the cath lab and we lose the Tyson we know and love? Or he becomes a totally different boy to us than the one we knew before? What if he loses his ability to walk or talk or be the fun-loving kid he is to us?
What if while they are trying to close the fenestration, the disc slips off the catheter and it flies off into another portion of his heart, causing either stroke or aother open-heart surgery to retrieve it?
What if complications arise and he starts severely bleeding and he ends up staying at Sick Kids for a lot longer than what we're prepared our other children for?

These questions are never far from my mind, and while they don't last long they are still there. At the same time, just as I am breathing the worries and doubts to my Father, I feel His presence and know He is a loving and powerful God who reassures us time and time again:
"Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9
"In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

2 comments:

willowsprite said...

Praying for peace for you and your family over here. <3

John and Hilda said...

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13