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!

Day Eight Post-Glenn - Wednesday, May 20, 2009

" 'For I know the plans I have for you,' declares the LORD,
plans to prosper you and not to harm you,
plans to give you hope and a future."
Jeremiah 29:11
Today Tyson's team of doctors made a decision that we didn't really want them to make. He is going to the cath lab tomorrow to have a heart catheterization done. This involves intubation (that's one step done already) and a general anaesthetic. They will send a catheter in through the groin as well as the neck to look at the pulmonary arteries, and investigate how the blood is flowing, and to measure pressures.
They are basically looking for two main things that could be causing low oxygen saturations. They are trying to find out if there is blood escaping and flowing where it's not supposed to go. These are called collateral veins or vessels. If they find collateral veins, they will coil them off to stop the blood from escaping where it shouldn't go. This procedure would be done at the same time as the heart cath, using the heart catheters.
They are also trying to find out more about the narrowing of the pulmonary veins that Tyson has. (Or was it the pulmonary artery that was the problem, I don't know - that is why I need Brian there with me when they explain these things because I still don't get it all....) If they are too narrow, that could be reason for low sats. This problem can be solved by doing what's called a balloon angioplasty. They insert a balloon-type "things" into the vein and dilate it to widen it. They may also have to consider putting in a stent or two, depending on what they find with these narrow veins. If Tyson does indeed need a stent, it would involve more blood thinners.....aka Enox needles. We will cross that bridge if/when we get there.
Tyson was a happy baby again today. He spent some time in the chair again today. This morning they were going to try the t-piece off his ventilator again to see if he would be able to move forward towards extubation, but now that they have decided to send him to the cath lab, they obviously aren't planning this anymore.
If the low sats are a cardiac issue, the issue can be resolved through the cath lab and we should see an improvement in his saturations immediately.
The morning x-rays showed a small improvement but still some consolidation on the right upper lung. I know the pneumonia is clearing up nicely because Tyson has been in a good mood these past two days.
And oh yeah, the IV team had to come AGAIN to put in another line! What a little Hudini, he finds a way to wiggle those lines out.
In the meantime, Tyson is still receiving a healthy amount of breastmilk through his Ng tube, which won't come out until after the ventilator is gone. I am still pumping like crazy and very hopeful that the issues can be resolved and that I can start nursing him again soon. Tyson will not be losing weight this time around, since he is getting 110 ml (almost 4 oz) every three hours round the clock.
Even though a heart cath is not a pleasant procedure, especially considering the risks which I won't talk about, and I try not to think about, we know this will give us the answers we are waiting for. Hopefully tomorrow we will have answers and can finally move forward in Tyson's recovery.
Please pray that Tyson's heart cath tomorrow will go smoothly with no complications, and that God will give the doctors answers to our little boy's health.
Mel:)

4 comments:

Mel said...

Hey! Well the surgery didn't go as easily as planned, eh? We continue to pray that the Lord will bless the decisions that the doctors make and their hands as they perform the procedures. Hopefully after tomorrow you will have more answers and Tyson will be able to make larger steps on his road to recovery. "When I am afraid I will trust in you..."

Alida said...

Hey,
It was good to see you yesterday, even if it was short! Praying for good results today.

Anonymous said...

Hi Mel
Still thinking of you and tyson I know I get to talk to Brian in person, but I want to remind you to that if you need Brian there dont hesitate to ask him. the work will just have to wait. one thing about work it usually does not run away.
Keeping you in my thoughts and prayers

Sara said...

Here's to you quietly cuddling up at home and actually nursing your baby again with no tubes, doctors or bright lights and few worries! We pray for you every day!