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 nine 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!

Monday, March 21, 2011

HAPPY SPRING!

Tyson had an ok night. His sats kept dipping so the nurse was in and out of our room all night. Fortunately, Tyson sleeps through it all, unlike his mother :)
His sats are still not where they should be so the cardiologist ordered another echo and chest x-ray today (without me pushing for it!!) to rule out other issues. I hope to be able to report back on those later tonight. THANKFULLY he did not need sedation for this echo and was able to lay still for almost an hour. I am totally gonna push for his next out-patient echo to be non-sedate! He can do it! And you all know how much he and I both hate the sedation part. It sucks :(

Nothing more to report for now. I will try to get to a computer at about 9pm tonight for another quick update. Praying there was nothing significantly wrong on the echo and CXR.
9:15 pm
The echo came back ok. There are no obstructions in the Glenn shunt and the Fontan connection is good too. So it doesn't look to be a cardiac issue. The chest x-rays came back clear too :) Praise the LORD!
This afternoon, all of a sudden Tyson's sats started to pick up a bit. They sat in the mid-to-high 70s (still on the high flow O2 mask. I even saw an 84 :) Unfortunately we don't get to see those high numbers for too long because they immediately start weaning the O2, which is a good thing though.
So he was weaned off the high flow O2. The lower the percentage of flow, the louder that machine got...I was getting rather annoyed! There was no way I was going to get any sleep with that loud cooshing sound. Well, instead of switching Tyson over to the low-flow O2 mask the nurse decided to give the nasal cannulas a shot again. I don't want to speak too soon but......he's been on 2.5 litres of O2 on the nasal cannulas since 7:00pm...with sats in the mid 70s! YAY! I asked them not to bother trying to wean the 2.5 litres until morning, since Tyson seems to desat while he's asleep.
So it looks like things are FINALLY heading in the right direction. Please keep praying that the sats keep climbing and the amount of O2 required keeps going down. Once Tyson's sats are good on 2.5 litres, they'll wean to 2.0, then 1.75, 1.5, etc etc until he no longer needs it at all - which usually takes a few days at the very least. I think they usually like to see a patient completely off O2 altogether for 24 hours before discharge. So we still have a few days to go but at least we're heading the right way now :)
I saw in Tyson's chart today that for Influenza A they isolate the patient for 7 days. Tomorrow will be day 7 in isolation on 4D. Let's see if he's allowed out of his room tomorrow? I will ask at rounds in the morning. He is coughing very infrequently now, and since his chest x-ray came back looking so good, there should be no reason for him to remain in iso for much longer. Here's hoping anyway :) He was able to escape his room very briefly today when we took him down for chest x-rays. He enjoyed a short ride in his stroller with a portable O2 tank in tow, but of course we passed the playroom on the way back to his room...and the begging started again. At least it was only begging and not kicking and screaming this time!
Please keep praying for our little fighter.
Mel:)

1 comment:

Tanya said...

Hi Melissa.
SOOOOO thankful for good news! Praying that today is even better and you'll be heading home soon :)I hope you are having a wonderful day today with visitors and are able to get out of your isolation for a while. Missing you!
T