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:)

Cardiologist & Respirologist Appointments



Tyson went for his regular check-ups at Sick Kids on Wednesday, November 2 to see the cardiologist and respirologist.

Tyson didn't have an echo this time so there isn't a whole lot to report about his cardiac condition. (Other than he still has half a heart LOL.) He now weighs 31 pounds and his O2 sats in clinic were 87. We used to see numbers in the high 80s-low 90s but unfortunately that didn't last long and now at home we often see low - mid 80s again.

Dr McCrindle, cardiologist, made a special notation in his calendar to be available for consultation during Tyson's heart cath scheduled for Dec. 5. Last cath in June he was away on holidays. Again in September he was away, and the scheduled cath was postponed because the cardiology interventionist wasn't comfortable making decisions without Dr McCrindle around. Dr M said he is 100% certain they will be paging him from the cath lab to decide what to do about the fenestration closure. First they will perform a test occlusion (balloon it closed temporarily to watch how his body reacts,) then observe Tyson closely for about 10-20 minutes to see how the closure will affect his pressures. If his pressures remain stable, they will go ahead with placing the metal disc inside his heart to permanently close the hole. This will stop all mixing of red and blue blood (oxygenated and de-oxygenated blood) and help raise his O2 saturations, giving him a healthier winter, and hopefully buy him more time before another surgery. However, if the pressures elevate too much during the test occlusion, then fenestration closure is not possible for Tyson this time. Our hopes aren't set too high that the closure will be a success, because his venous pressures and pulmonary artery pressures are very high due to the stenosis in his left lung veins. So we won't be surprised if they cannot close the fenestration.

Dr M also reiterated that the results from this cath procedure will determine what is next for Tyson. He will be presented to the surgeons again for consideration. Consideration for either another open heart surgery on his pulmonary veins or for transplant surgery. Either way, his little chest will need to opened up once again :( I asked Dr M, "If we know that transplant is inevitable for Tyson's future, why don't we list him for a new heart/lung right now, even if that means he's on the bottom of the list. We don't want to watch Tyson get sicker and sicker and then have to go into such a huge surgery already weak." Dr M assured me that they will not wait for Tyson to be sick before they list him. This upcoming cath will be a deciding factor for what to do next.

Although all this information is not at all new to us, it is still difficult to hear and accept. It's so hard to believe that our little Tyson, who is growing and developing so well right now, has such a sick little heart. He runs around without a care in the world like any other healthy boy, doing all the things other boys do at this age. He's talking a mile a minute, he's outgrown his afternoon nap, and he's completely toilet trained. (Yes, the boy who adamantly declared that "underwear is DUMB!" was toilet-trained within two days!) How can this boy, who looks so normal on the outside, who can for the most part keep up with other children his age, be so sick on the inside? I don't get it either. It's hard to accept. But, as my insightful husband reassures me, "We don't have to accept anything yet. We accept that we don't know." Ok, true.

The appointment with the respirologist also went off without anything new to report. Tyson's asthma is very well under control since he's been on the nebulizer twice a day as preventative therapy. He has caught a few small colds this fall and although he does get wheezy from it, the ventolin and pulmicort are doing their jobs and he hasn't had to be hospitalized from anything so far.

Dr M did stress keeping Tyson away from sick people, especially with his upcoming cath. They won't put him under general anesthesia or intubate him if he catches the slightest thing. So it's officially "lock-down" time for Tyson. He'll only leave the house when necessary.

That's the latest news on Tyson. We'll report more after his pre-cath appointment on November 30. Keep him in your prayers please!