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 Thirteen Post Glenn - Monday, May 25, 2009










"As for God, His way is perfect;
the word of the LORD is flawless.
He is a shield for all who take refuge in him.
For who is God besides the LORD ?
And who is the Rock except our God?
It is God who arms me with strength
and makes my way perfect."
2 Samuel 22: 31-33

TYSON IS IN STEP-DOWN!
Things have really started to pick up for Tyson in the past two days. As you can see from last night's blog update, he was extubated last night at about 6:30 pm. They had him in the head box for a while afterwards to give him a bit of extra help. He is doing very well and the chest x-ray this morning showed that the right lung collapse is healed! Sometimes all they need is to be breathing and coughing on their own in order to re-inflate the lung themselves.
He is now in a Step-Down room on the fourth floor! He is still on a bit of oxygen to help him out a bit and his sats are in the high 70's, low 80's.
As far as medications go, he is off the morphine infusion but will still be getting Tylenol when needed. He is still on Lasix to help him flush out fluids. But he hasn't been on Milrinone (the IV version of Captopril) for about a week now. I asked the cardiologist if this means that he will no longer need Captopril at home and he thinks it is unlikely that he will need it! So no more Enox injections and no more Captopril either! He will probably still be on Lasix for a few days after we go home but that is no big deal. It looks as if he will not be on ANY medications anymore after that!
Today his arterial line was taken out and the stitches from his chest tubes were taken out. He is still on the sats monitors obviously, and his PIV line is still in his hand, just in case he needs some meds through IV.
He drank three bottles today and I will most likely get to begin nursing him again tomorrow. As long as he drinks enough each time and he gains well, they will pull the Ng in time too.
Last night Brian and I were playing with Tyson and making faces at him and he actually laughed at us! It wasn't a very loud laugh because his throat still hurts from being intubated so long, but he was definitely laughing! Brian and I were laughing and crying at the same time when we heard this lovely sound coming from our son's mouth! It is so good to have Tyson starting to get back to normal again! (And we heard the nurses arguing over who gets to take care of Tyson last night! Either that or they were fighting over Brian, not quite sure which!)
Mel:)



8 comments:

Anonymous said...

Rejoicing with you all that Tyson is out of ICU and soo close to having his own room. Wow, to maybe go home with just Lasix (only for a while) is amazing. God provides for us with all that we need and we pray that He will continue to hold your family in His arms. Every day is a precious gift from God, let us always treasure this.

Anonymous said...

Praise the LORD for He is good! His mercy endures forever! Great news!! May Tyson continue to progress under God's care.

Garth and Alida and the kids

Anonymous said...

Wow Mel...the Lord works in such mysterious ways!!! When I read the latest update...I was smiling from ear to ear!!!! He looks soo good!!!!
Andrea Hopman

Jay & Mel said...

AWESOME!!! Just plain awesome!
Hi from Jay.

Anonymous said...

How awesome is that?!? May Tyson's recovery continue on this positive track as we see God's answer to many prayers!
Henry & Marg

Anonymous said...

Praise God!
You guys must be so excited! It is so nice to see the picture of Tyson - so nice and chubby and bright eyed!
Can't wait to see you in Shelburne!
k

gerryandmargaret said...

Fantastic picture and awesome news! Hope to see you home again soon. God Bless

Margaret

Lea and Derek said...

Wow! Way to go Tyson! So nice to hear that he is doing so much better!
Can't wait to see him and you home soon!