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!

Graduation from Single Ventricle Clinic Appointments

"The Lord is faithful to all His promises
and loving toward all He has made."
Psalm 145: 13 b
Today we went down to Sick Kids again for Tyson's last appointment with the Single Ventricle Clinic nurses. He had a chest x-ray and an echocardiogram done, which both showed good heart function. The nurse practitioner Paula is very impressed with Tyson's progress. He now weighs 7.685 kilograms (almost 17 pounds) and his sats are in the low 80's. Paula assures us that things should start becoming easier for him now. His heart is much stronger now that he has had the Glenn surgery, and his body is not having to work so hard to just pump blood. He should start becoming more active now and, from a developmental perspective, he should start to take off soon. He has mastered the rolling over from front to back now and is showing more of an interest in reaching for toys when sitting or laying. He has regular visits from the physiotherapist who was impressed with his progress just in the past week already. It took a while for him to rebuild his strength after surgery and his muscles seem to be getting stronger and stronger every day.
We are also happy that we don't have to stress so much about him getting sick all the time. It is time to start building his immune system and, although we don't want to knowingly expose him to sicknesses, his body is that much stronger now and able to fight off viruses easier. This is not to say that he will never end up in the hospital with pneumonia again, but he will most likely be able to fight off a common cold a little easier now.
He should also start to gain weight a lot easier now. He is a pretty big baby compared to other cardiac babies, but he has plateaued in the last month because of the bout of pneumonia in April and his surgery last month. And now that he is taking pablum well, he should start packing on the weight even easier now. (We started him on oatmeal cereal and he is LOVING it!)
Things that are different for us since his surgery:
- his hands are WARM! He always had cold hands before. It is so nice to hold my baby's nice warm hands!
- no more bruises on his legs from the Enox needles. (and I got to drop off the sharps container full of needles to the pharmacy this week!)
- we don't have to stress about a medicine schedule since he is only on Lasix now (and down to once per day)
- when he cries or has a temper tantrum, his face gets red instead of blue. (oh, the things we take for granted eh?)
All in all, Tyson is doing so great. We are so thankful for God's loving hand in all of this and it is so great to have this surgery behind us now. I feel so much more relaxed with him now and I am really starting to finally enjoy my baby. He is so much fun and is developing quite the personality! (but is his temper a nature or nurture thing I wonder?!)
The boys love watching as Tyson follows our forks to our mouths as we eat at the dinner table, his mouth open wide. And he is starting to interact with us verbally too. Today we were growling back and forth at each other.
So for those of you who are asking, the final surgery will be when Tyson is between the ages of 2 and 4. It all depends on his heart function and his oxygen saturation levels. It also depends on the "leaky valve" he has, how the patchwork holds up that they did during his Glenn surgery, and if it needs attention again before the final surgery. The doctors will keep a close eye on this through regular echocardiograms. But for now, we don't want to look ahead to this surgery but want to enjoy our baby and get back to normal, or as normal as possible. Our lives will always involved keeping a close eye on him for any signs of heart failure. The smallest things like a sudden decrease in appetite, fatigue, or shortness of breath could mean something serious is going on. So we just pray that God gives us the wisdom and insight we need to detect these problems should they occur.
Tyson has an appointment to see the Staff Cardiologist Dr. McCrindle at the end of June. From there he will have a full-study echocardiogram done once every 6 months or so. But other than that, we shouldn't have to visit Sick Kids as often anymore! After the Norwood surgery in December, he had to be seen very regularly since there was a shunt in his heart. The shunt could at any time get kinked or twisted or slip out of place, so it had to be kept under close watch. Now the shunt is out and, although only the left side of the heart is working, it is much stronger than it was before the Glenn surgery. The blood flow is better and his heart is getting more oxygenated blood from the lungs now.
Brian and I are so thankful for everything that God has done in our lives and how He has protected and spared the life of our dear son. When our babies are born, we always choose a Bible text for them that we use in their Clarion birth announcement and we also script it on the front page of their scrapbook. When Tyson was born, before we even knew of his heart condition, we picked Psalm 145:13b
"The Lord is faithful to all His promises and loving toward all He has made."
Have we ever seen evidence of this in Tyson's life! All honour and praise and glory and thanks be to our Almighty and Faithful Lord!
Brian and Mel:)