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 Four Post-Glenn - Saturday, May 16, 2009

"May He give you the desire of your heart
and make all your plans succeed.
We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the LORD grant all your requests.
Now I know that the LORD saves his anointed;
he answers him from his holy heaven
with the saving power of his right hand.
Some trust in chariots and some in horses,
but we trust in the name of the LORD our God."
Psalm 20: 4-7
The text we chose for yesterday's blog update was so very appropriate for Tyson and his life right now. " Listen to my cry for help, my King and my God, for to you I pray. In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation." Psalm 5: 2-3.
When we arrived in Tyson's room this morning, the cardiologist fellow said to us, "I think we may have found something on Tyson's chest x-ray this morning." He led us to the computer where we saw the x-ray, which was very different from yesterday's x-ray. Different, but not in a good way. It clearly had progressed from bad to worse overnight and the nurse also mentioned that the secretions which they suction from his ventilator tube several times per day have gotten worse in the last 24 hours. Tyson also had a bit of a fever yesterday evening and throughout the night.
Although this may seem like pretty bad news, we are quite happy about it for one main reason: this indicates that the decrease in Tyson's oxygen saturations are most likely a result of a lung infection, and not a result of the heart surgery gone bad!
They have taken a BAL culture swab of the secretions and we will have results shortly about what the infection is exactly, but for now they are treating it as pneumonia and Tyson has been placed on two antibiotics to treat it. If the results come back to a different type of lung infection, they will change the antibiotic to something more specific for that particular bug. (Every bug has as specific antibiotic that kills it.) It is common for babies on ventilators for an extended period of time to catch what's called a VAP (ventilator associated pneumonia.) This is why they do try to extubate as soon as possible after surgery, to reduce the risk of infection. Because Tyson had failed extubation twice (once in the O.R. and once later that afternoon) and he had increased work of breathing for so long on Tuesday and Wednesday while he tried to breathe on his own, he was probably more susceptible to catching a bug because his immune system would have been compromised.
So that is what they are leaning towards right now. If a lung infection is indeed the cause of the low sats, the antibiotics should help improve his sats as quickly as tomorrow morning. Once we know for sure what type of infection it is and the antibiotics do their job, his sats should improve and he can be extubated when they feel he is ready, and he will not need a heart cath afterall.
We are praying that the infection is the cause of low sats, because then it is a simple problem with a simple solution. Having to do a heart cath means that something went wrong with the surgery and it could need to either be reversed or fixed by another surgery. We are really hoping not to have to go down that road with Tyson. He has been through so much already and it would be nice if he can continue to move ahead from this point on!
Please keep praying. God is so good and He will give the doctors answers. Until we know for sure, we keep waiting and praying and practising patience. We won't learn patience and trust if our patience is never tested. God is pruning us and moulding us into the people He wants us to be. We are so thankful for being able to rely on Him for all things!
Brian and Mel:)

5 comments:

gerryandmargaret said...

Well that's good bad news:) Glad to hear that there may be a solution to the problem! Praying always for Tyson's recuperation. take care.

gerry, margaret

Anonymous said...

Hi Brian & Mel, our thoughts and prayers are with you and your family. Praying that Tyson will have a successful recovery. Greg & Jolene

Mel said...

Hey! Glad to hear you are keeping positive in light of the situation and seeing God's hand in it all. Hopefully the infection is the cause...I like how Gerry and Marg put it...that's good bad news! See you tomorrow!!

Anonymous said...

Hey Brian and Mel, Just wanted you to know that we pray for little Tyson everyday and pray that God will give you much strength and patience. Love Jim and Deb

Michelle said...

I'm really hoping and praying that the source of the problems has been found and can be dealt with. It would be really great if your little trooper could be making progress in his fight!
Hugs & Kisses
from Aunt Michelle, Uncle Josh, Evan, Tyler