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!

February 17, 2010

"Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways acknowledge Him
and He will direct your paths."
Proverbs 3: 5, 6


Tyson had an echocardiogram at Sick Kids today. It was a sedation echo so he wasn't allowed to have breakfast at all. He had a bottle at 5am and then nothing until after he woke up from the echo, which was scheduled for 10:30am. Of course, they were running late in the echo lab so we had to keep him happy till 11:30am! After fighting with me tooth and nail for about a half an hour, he finally fell asleep in Grandma's arms, he had his echo which went very well. They also did his ecg while he was still sleeping. Once he awoke, we were able to give him food and drink and then we were off to see his cardiologist Dr. McCrindle. (The drunken stupor that Tyson experienced when he woke up is quite something, I might add. *snicker snicker*)

Dr. McCrindle was happy with Tyson's weight, (about 25 pounds) the echo and ecg both looked good, and Tyson's sats were in the low 80's. The mitral valve on the left side of Ty's heart is leaking a little more than it was since his last appointment, but Dr. McCrindle isn't concerned about that because once Tyson has his Fontan surgery, there will be less pressure on the mitral valve, so it shouldn't leak anymore. The reason it's leaking is because the left side of the heart is receiving a heavy volume of both blue and red blood (deoxygenated and oxygenated blood) and it's causing the valve to stretch.

Think of the heart as a pump, or two pumping stations. The right side receives blood from the body and pumps it to the lungs. The left side does the opposite, it receives blood from the lungs and pumps it to the body. Tyson's right side is underdeveloped so it cannot sufficiently get blood to the lungs, so right now it is flowing there naturally through the "Glen shunt." Before the Glen surgery in May '09, he still looked very pale and blue because there wasn't enough oxygen-rich blood going to his lungs to supply his body.

Once the Fontan surgery is complete, the deoxygenated blood (blue) will go straight to the lungs and then return to the heart as oxygenated blood (red.) There won't be anymore mixing of blue and red blood. During the Fontan surgery, the surgeon will also puncture a small hole in Tyson's heart, called a fenestration, to relieve some pressure in the heart. This hole allows the lungs to gradually get used to getting all the blue blood directly from the body. It allows some of the blue blood to escape and bypass the lungs if the pressure gets too high. Once the lungs are used to the new system, the hole can be closed. Sometimes the hole closes on its own, but other times it needs to be closed surgically by another heart catheterization. (6 to 12 months after Fontan surgery.)

Dr. McCrindle says that Tyson's heart is more complex than someone with just Hypoplastic Right Heart Syndrome (HRHS) or just Tricuspid Artresia. Since he has both HRHS and TA, and Transposed Great Arteries, and Coarctation of Aorta, they have modified the surgeries to suit what he needs.

Dr. McCrindle would like to move forward with this final stage of surgery sometime in the next 6-9 months. We will be contacted in the next little while to have Tyson undergo another heart catheterization (catheter injecting dye into heart to measure its pressures, etc.) and possibly also an MRI (gives another perspective on what's going on in there.) These are standard pre-operative procedures. I can't believe we are preparing for another surgery yet this year! In a way, it will be nice to have it all behind us and leave Tyson with absolutely no memory of this time in his life. Dr. McCrindle would like everything to be done and over with by Tyson's second birthday. Since Tyson is doing so well and he is so strong, and his heart is so strong, he would like to move forward before his heart starts to deteriorate.

We are still processing this new information, as you can imagine we are quite shocked to hear this! We assumed that his sats would drop drastically and his heart health would deteriorate before they even thought about the Fontan. But God has a plan for our "little" guy and when He leads, we just follow.

That's the update for today. The next appointment with Dr. McCrindle is scheduled for May 26, DV, and maybe a heart cath in between somewhere. We will keep you posted.
Mel:)



5 comments:

Anonymous said...

When I read all this I can only say WOW! You have both learned so much. Thanks for the update. How amazing is our God. He has lifted you up and carried you along such a rough road. You are an inspiration to others. Our prayer is that He will continue to give the doctors wisdom, Tyson a successful surgery and you as parents the faith needed to trust in His will.

Aunt Rita said...

The above writer almost took the words out of my mouth. My first words were going to be wow, as I read all this...
Do you ever find, that when you write us such an intricate update, you ask yourself, is this really real? Sometimes all the info your brain has to absorb must be overwhelming. Like puzzle pieces, it all comes together slowly for this little trooper eh? It shows us again and again, that every moment, every birth, every joy, every anxiety and every moment in our life is in His hands, and ONLY in His hands. God remains with us, in the low and high moments in our life. How rich we are, when we feel and see this richness. Like you said once before, if Tyson had been born many years ago, the outcome might have not been as good as it is now already. Your faith has kept you strong, and our prayers are that it all goes well with Tyson in the months ahead.
Thank the Lord that is all has gone as well as it has so far.

Sara said...

Your knowledge will I'm sure be a blessing to another family some day. Yes, The Lord definitely has an awesome plan for your family.
We continue to pray for you.

Joanneke said...

Its so amazing to read how incredibly intricate our bodies are, and especially our hearts! What a wonderful thing it is to have highly trained doctors who are able to care for Tyson so well. Thanks be to God for making it possible for Tyson to be doing so well so far, and we entrust Him into God's loving hands. We wish you all much strength in this coming year.

The Clinkscales Family said...

Hello! I am still speechless after finding your blog. This morning I happened to do a search of blogs and used came across your blog. My son also has Hypoplastic Right Heart. He just turned 13 months on Monday. I look at SO MANY heart families blogs but this is the very first time I have come across someone who has the EXACT same heart defects as our son. Just as Tyson, our son was born with Hypoplastic Right Ventricle, Tricuspid Atresia, Transposition of the Great Arteries, Coarctation of the Aorta, ASD and VSD. Seriously, I'm just speechless!!It always seems no two heart is just alike but Cain's and Tyson's is the closest I've ever found. I will continue to follow you blog and I'm so thrilled to see that Tyson is doing great and a chunky little monkey. Our son Cain is also doing great and we feel so blessed. We have a blog too..it's www.clinkscalesfamily.blogspot.com I'm so thrilled I found you. Take care, Catherine