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!

Evening Update - Tuesday, April 7, 2009

Tyson suffered a lung collapse earlier this morning and it was healing well. However, this afternoon the lower left side began collapsing as well and so now they are rotating him from lying on one side to the other. The lungs seem to be re-inflating well enough but they are not sure what is causing the problem. When they deep-suction him, they expected to see a lot more secretions than they did, considering we mentioned he had come down with a cold. However, they don't seem to have to suction him very often and so they aren't sure that this was the cause of the collapse. This afternoon he also had three episodes of de-sat'ing (the kind where we would see all the doctors and nurses running into the room - the kind that Brian and I have never had to witness happening in our room but were wide-eyed when it happened to others!) Tyson just unexplainably dropped in O2 sats, but no one knows why. It wasn't even as though they had just upset him by suctioning him or repositioning him. Quite often something like that can upset a baby and his oxygen levels would drop just from being upset, or the blood pressure or heart rate would go up. But the nurse said he was just lying there peacefully one second and the next second his sats dropped to the low 40's.
Well we must be patient as we await answers to his blood cultures, which should tell us what kind of infection (if any) he is fighting.
Currently Tyson is comfortable. He is on half the amount of morphine as he was last night, the sedatives have worn off and he is not on any paralyzers anymore either. He did spend some time awake and alert this afternoon (when we weren't there) and the nurse said he just looked around peacefully. He hasn't started Ng tube feeding as of yet because they feel he isn't quite ready for that yet. When they do start, it will be my pumped milk (yes, I am pumping again, fun fun...) He is a little puffy because they think he wasn't getting quite enough fluids overnight and was a little dehydrated as a result. They are trying to adjust the amount of intake based on how he handles things.
We are heading to bed early tonight as we have been up since 6 am Monday morning. Thankfully, we have a parent room in the hospital for the night. The appropriate protocol is to hand in the key in the morning and not to expect the room to be available again necessarily, but we will see if we can "renew" the room. We also have a Social Worker looking into a hotel room for us.
That is all for now. Thanks for your prayers.
Good night.
Brian and Mel:)

6 comments:

Henry and Jules said...

Aww,sorry to read that you guys are back at Sick Kids. We will definitely keep you in our prayers. Remember that God is carrying both you and Brian, and little Tyson, and your other children at home in His arms right now!
Praying for you all.
Henry and Julia

Jenn said...

We are praying for your little guy and hope all goes well with the tests and hopeful future surgery.

Anonymous said...

we have not heard from you personaly but we assumme you have enough on your mind right now. thought i would look on your blog and as i should have known you are keeping everyone up to date.
our thoughts and prayers are with you at this time.
PS Brian work will take care of itself! thanks Richard

Garth and Alida said...

"In Christ alone my hope is found,
He is my light, my strength, my song;
This cornerstone, this solid ground, firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease.
My comforter, my all in all, here in love of Christ I stand."
Keeping you in our prayers,
Garth and Alida, Sara, Noah, Julia, and Nadia

Anonymous said...

Hey Brian and Mel
Thinking of you and praying for you and Tyson.
Lots of love
Derek, Lea, Sierra, Hannah and Isaac

Bernie and Joanneke said...

Dear Brian and Melissa,
God is our refuge and strength. A very present help in times of trouble. We are constantly keeping you in our prayers.
Love,
Bernie and Joanneke, Caleb,Rebecca,Josiah,Seth,Hadassah,Isaiah,Levi