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 nine 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!
ECHO and Cardiology Update
Brian and I left Sick Kids today with a huge sense of relief and our hearts full of joy at the results of all of Tyson's tests today. The great news is that there are no plans to stent Tyson's left pulmonary artery or pulmonary veins right now!! The cath lab team wants to stay far away from that area as they feel it would do more harm than good. Every time they mess around in one area of the heart it causes scar tissue, and too much scar tissue is not good for long-term prognosis. The plan is to have another MRI sometime next year, compare results, and make a plan then if things go downhill. Tyson is doing very well from a cardiac stand-point (good energy levels and sats of 87) so they're going to leave him alone for a while :) You don't know how happy that makes us!!
Tyson's dental examination showed only one cavity, so they don't want to do dental surgery for one cavity. Because of Tyson's respiratory and cardiac issues, anesthetic is risky so the benefits must outweigh the risks. In this case, they feel he can handle it with a bit of laughing gas. We have to come back sometime in the new year to fix the cavity, and we hope and pray he wakes up on the right side of the bed that day!!
Tyson hasn't had any nosebleeds in almost 2 weeks, so he didn't even have to see an ENT today which means they decided not to cauterize anything today. Dr McCrindle says that since it's been almost 2 weeks, it's likely that there are no damaged vessels in his nose and that nosebleeds are normal for kids on coumadin, particularly in his age group. So basically we just have to deal with it.
We're looking forward to not having to go to Sick Kids until the new year. It feels like we've been there a lot lately. We will have a dental appointment for Tyson in the new year, and an appointment for Addisyn to look at a few things too, but Tyson doesn't have to go back to the cardiology ward for another six months :)
I would like to share with you one of those awesome 'God moments.' Today on the cardiac floor at Sick Kids, we ran into one of Tyson's Respiratory Therapists who works at Headwaters Hospital in Orangeville. Except today she wasn't wearing scrubs and running room to room to help little children with their oxygen needs. Today she was rocking a crying baby, her own face stained with tears. I still can't believe it, but her newborn daughter was born with a large VSD (hole) in her heart and today 'just happened' to be the day that she was having open-heart surgery to repair it. Nothing happens by chance, and today God allowed our paths to cross so that Brian and I could offer hope and comfort to a new 'heart family' as they prepared to hand their baby off to the surgeons. I know that seeing Tyson as a happy and healthy five year old (when she usually sees him sick and weak) must have offered her some real hope for her baby's future. What's even more amazing is that her surgery was originally scheduled for Monday, but it got canceled and rescheduled for a day that we would be there to give support. Praying for baby Natalie Rose.