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, November 30

Tyson had his pre-cath appointment today at Sick Kids. Everything went smoothly and we were done by 10:30am - Record time! Since he had just been at cardiac clinic on Nov.2, he didn't need an updated ECG or chest x-ray so the only pre-op tests he needed done was bloodwork, sats check, weight, vitals, etc. We've been here, done this, so many times that it's all old-hat to us. So it was a quick in-and-out appointment today!

Tyson is good to go for Monday's cath procedure, provided that he remains healthy. He has had a very slight sniffle but it's so hard to say if it's really a cold or not. We tend to over-analyze things when we get this close to the cath and every cough or sniffle causes our heart to jump. The problem is Tyson struggles with nose bleeds (because of the blood thinners) so he tends to freak out if he feels any moisture in his nose whatsoever. And because he's on the nebulizer mask every day, it can cause quite a bit of humidity in his nose and he does drip a little afterwards. Anyway, he looked very well at pre-op clinic today and he appears healthy enough to go ahead.

On the way to Sick Kids this morning, Tyson just about broke my heart with something he asked me. We've always wondered how much of his heart condition and his surgeries he truly understands. Today he asked me, "No open my heart, Mom??" I just about choked up , and quickly reassured him that there was no open heart surgery this time. But wow, what a question for a three year old to ask! When the Child Life Specialist explained the details to him today, he already knew exactly what was going to happen. Afterall, we did just review this with him in September when his last cath was cancelled, and he just had a cath in June too. He knows that he is going to wear a watermelon-scented mask which will make him fall asleep, and when he wakes up he will have an IV in his hand, a band-aid on his leg (they enter his heart through a vein or artery in his groin) and that he can lay down in bed and watch tv for a few hours with Mom and Dad until he feels better. He is excited to get to watch the movie Cars!

Tyson is first case on Monday morning. His procedure is scheduled for 8am, we have to be there for 7am. He will be having an MRI first (to assess the pulmonary vein situation) and then will go to the cath lab. The entire procedure will take about 2 1/2 to 3 hours. Then he will need at least 6 hour recovery time before we even think about heading home. And if they do close the fenestration it may be an overnight stay for observation purposes.

Please pray that Tyson will remain healthy and ready for this procedure, that his heart & lung pressures are low enough for him to have the fenestration closure. Please also pray that the pulmonary vein stenosis has not progressed but that the veins remain stable, so we can hold off on any talk of heart & lung transplant in the near future.

Mel:)

3 comments:

Aunt Rita said...

Wow...lot's to absorb in this letter from you. Our thoughts and prayers are with you always, and especially now, that he stays healthy until and through Monday's procedure. That is CAN happen and be done with.
All the best Melissa and Brian, and siblings!

willowsprite said...

Praying! <3

Anonymous said...

What an incredible mind Tyson has to ask such a question eh?? I wonder if it's best for him to get a sense of what is going on so he can try to mentally prepare himself and relate with you guys when the hard times come and I pray all goes well that there won't be many more hard times any more. Cars eh? Now that's a treat for him! Something to look forward too along with a loving family being there for him every step of the way, guided by his Heavenly Father.

Continually keeping Tyson, you and the rest of the family in my prayers. What a struggle this must be and yet such a blessing at the same time to see just how strong Tyson and his family are and can be in trials and tribulations! All the best Mel!!

Heather