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!

Wednesday, April 8, 2009

"From heaven the LORD looks down and sees all mankind;
from his dwelling place he watches all who live on earth-
he who forms the hearts of all, who considers everything they do. "
Psalm 33: 13-15
This morning when Tyson was rolled over to get an x-ray done at 5:30 am, the nurse heard his voice...since the ventilator tube goes down past the vocal cords, you shouldn't be able to hear his voice at all. Not even when he cries, coughs or sneezes. It turns out that his ventilator actually came out. The nurses don't think it was pulled out by Tyson, but that perhaps he coughed or sneezed it out. The doctor decided to try and keep him off the ventilator to see what he would do. But he wasn't ready, since his chest was indrawing again and he was having to work way too hard to breathe. So he had to have more paralyzers in order for them to re-insert the tube.


He also was very cranky and fiesty when the Respiratory Therapist came in to do lung compressions (to expel the secretions in his lungs.) So they gave him Ativan before the RT came in for his afternoon therapy, to relieve some discomfort. They are continuing with therapy 3 times a day until his lungs can re-inflate. The chest x-ray done this morning didn't show much change in his lungs from yesterday. Hopefully the lungs can re-inflate soon, and then he can come off the ventilator. Right now they are weaning him off of the ventilator because the longer he stays on, the greater risk of infection.

We have no results from the blood cultures yet, since it takes 48 hours for bacteria to grow, but as of right now Tyson is being treated for bronchialitis. Often babies with bronchialitis will react negatively when the lungs are being compressed during therapy, which is what Tyson did this morning. The RT thinks it is most likely bronchialitis, and Tyson is also having increasing amounts of secretions in his lungs. So right now he is on anti-biotics to treat it. Once we get the results from the blood cultures tomorrow sometime, we will know more and the doctors will have a concrete plan as to what to do for him. It's a waiting game until then.
Tyson is also on Lasix again, which is a diuretic drug to help him pee. He has retained a lot of fluids and the Lasix helps him flush the fluids out. He was still quite puffy this morning but this afternoon he looked a lot better.
Tyson is still very sleepy since they are giving him sedatives so that he can tolerate the physio therapy on his lungs. He was awake for a little while this morning and looked around at us. We know he can hear us but he didn't respond to us with any smiles (but lots of frowning and raised eye-brows!) We brought his fish aquarium toy that he kept in his crib at home so that he has some familiar music to listen to if he is awake and we are not there.
This afternoon he was pretty agitated with his arms being in restraints. They are just velcro cuffs around his wrists with long ribbons that are tied loosely to the crib spindles. They give him some room to move around but not enough freedom that he can pull tubes out. He is pretty upset about the ventilator up his nose and he is trying to get his head to his hand and his hands to his head to pull it out. Hopefully he won't need the ventilator much longer and he will be less annoyed.
The sad reality is that he is going through all this all BEFORE his surgery. We hate seeing him like this when he hasn't even gone through surgery yet, but hopefully after surgery his lungs will be healthy enough that he won't be intubated for too long.
All in all he had a good day today. Since they weaned him off the ventilator settings a fair amount today and he has made good headway with that, they probably will give him a bit more of a break overnight and let him stabilize before weaning the numbers down more. Tomorrow is a new day and we will update you again then.
Brian and Mel:)








6 comments:

Joanneke said...

Hi Brian,Mel, and Tyson,
Its good to read that things are improving. He's a chubby little (big!) guy, so he has that extra fat to keep him going for a while! Keep the updates coming...
Love,
Joanneke

Garth and Alida said...

Cute pictures!! Always on our minds, in our hearts, and in our prayers!

Garth and Alida

Anonymous said...

Hey there guys!
We are keeping you in our prayers!
Thanks for the pics! It's good to see how you all are doing!
God Bless
jkjajh?

Anonymous said...

Brian & Mel, we are thinking about you and you are in our prayers.
Colin & Janelle

Anonymous said...

Hey Guys,

I was thinking about you all this morning and wondering if you started doing your blog again...boy, did I have a lot of reading to catch up on! Hopefully you can find out soon what's bothering Tyson...waiting can be so difficult..we will keep you in our prayers! Jeff and Het

Anonymous said...

Hi Brian and Mel:
It is very handy and helpful for us to read your blog.....you have a very cute boy; the one where he is looking up at Brian is adorable. Take care and we are praying for you often over here.
MaryLynne and Henk