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!

Tuesday, March 22, 2011

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!
Tyson is allowed out of isolation! You'll never guess where he spent the entire morning!
He still de-satted a fair bit overnight but the doctors are impressed with his recovery and clear chest x-ray so they've taken the isolation sign off the door and he's free to go play with other kids! We have to follow him around with an oxygen tank and sats monitor so it can be a bit tricky...but it's worth the hassle. (I don't know who's more excited, him or me :)
His sats are still inexplicably lower than they should be considering his health...so I'm not sure what the plan is there yet. I know they want him to drink more fluids, which is difficult to do. You can lead a horse to water but you can't make him drink. They would like to see him taking in at least 800 ml of fluids per day but this is difficult when he rarely drinks that much at home.
There was talk on rounds this morning about putting him on IV fluids because he's not drinking enough. One of the problems of having so many different cardiologists working on his case is that information gets confused or misunderstood. Before Ty was admitted he weighed around 13 kilos. He was never weighed on admittance to Headwaters or on admittance to Sick Kids because he was in respiratory distress and his weight was the least of their concerns at the time. Anyway, at one point on 4D, before the IV Lasix was given, Tyson weighed 15.0 kilos because he was retaining an extreme amount of fluids. You should have seen how puffy he was; his face was huge, he was puffy around the eyes, and his arms and wrists were puffing out around the tape he had on to keep the IV in place. This morning his weight was 13.1 kilos. So the one cardiologist on rounds said to the other cardiologist in charge, "I think we need to start him on IV fluids as he is clearly losing a lot of weight. His admitting weight was 15.0 and he's down to 13.1. He's lost almost 2 kilos in one week." Oh, you should have heard me guffaw at her! I was like, "He has NOT lost almost 2 kilos!!! He was 15 kilos last Wednesday because he was retaining a huge amount of fluids!!!! His last echo appointment on February 23 he weighed 12.9 kilos and now he's 13.1!!!" She was like, ".....Oh....." (I can't imagine the things that happen to kids when their parents are not there to advocate on their behalf!)
Anyway, there is no other news except that Tyson and I are both happy to be allowed out of the room, we are working on getting him to drink more, and we still have to wait till his sats improve before we can turn down the O2. (He's been around 70% most of the day.)
All in all, a pretty good day. Add to that some good company, and it was a very good day :)
Mel:)

4 comments:

Mel said...

YAY!!!!!! Soooo exciting!! I am sure you are both thrilled!! One more step toward your coming home!! :)

Tanya said...

Awesome news! Can tell you are happy through your writing :) Continuing to pray for you all!
T

Joanneke said...

That's great to here, Mel! I can only imagine how relieving it must be to get out of that room together and interact with people again. Praise God for his goodness!

Anonymous said...

That is good to hear! Hopefully you can return home again soon!
jkvs