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!

One Week Post-Norwood - Thursday, December 11, 2008

"Rejoice in the Lord always.
I will say it again: Rejoice!"
Phil. 4:4
Tyson spent a fair amount of time awake today. Sorry that you had to miss that, Brian! It was wonderful to see him focusing on my face and tracking me with his eyes whenever I moved my head. He was awake from about 9-10 am and again for a bit at lunch time, and then he was awake for over an hour between 4 pm - 5:30 pm. I also "got to" change his diaper again!

Tyson is off of all sedatives now and is moving around a bit (and trying to pull at his tubes!) They have gentle velcro "restraints" that we are using on his one hand, as he gets irritated by the ventilator tubes and accidentally pulls at them. Hopefully tomorrow this won't be the case anymore because THEY PLAN TO EXTUBATE HIM IN THE MORNING! I am so excited about this as I will FINALLY get to hold him again! The ventilator is on the lowest possible setting you can have on support mode, and his saturations (oxygen levels) are stable, so hopefully things will go well and he will be successful at breathing on his own again.

As for the fluid in the lungs, I spoke with Dr. VanArsdale, Tyson's surgeon, about what is going on with that. He is not too concerned about the fluid outside the lung, in the chest area, and says that it is a minuscule amount, which is why Tyson didn't end up having a CT scan today after all (or a chest tube either!) Good news!
This fluid outside the lungs also has nothing to do with why they have him on portagin (and now they also have him on a calcium supplement too since his calcium levels are low from not being fed breastmilk.) I keep hounding as to WHY he is on portagin if they don't know for sure that the fluid is lymphatic fluid (called chylothorax) because I want my son to be on breastmilk. If nobody knows for sure if the fluid is chylothorax, why is he off breastmilk? Also, to qualify for the EBM study on skimmed breastmilk that I talked about last night, the baby needs to be on a chest tube. Since Tyson does not need a chest tube, he cannot have the option of the low-fat breast milk.


The fluid Dr. VanArsdale is unsure about is the fluid inside the lungs....but this also has nothing to do with why he is on portagin. So I keep asking WHY is Tyson on portagin? Even here in a world-renowned hospital like Sick Kids, there are glitches and there is misinformation. I am going to keep hounding until I get a straight answer because I just don't understand why Tyson is not being given the nutrients and anti-bodies he needs from his mother's milk. The nurse that is in tonight (AD) says that they have to err on the side of caution, especially since they plan to extubate tomorrow. We don't want to have an infection in his chest and then they have to keep the ventilator in longer, which also increases the chance of infection around his tubing. The longer they keep tubes in, the greater the risk of infection. So for right now they are focusing on extubating, and will deal with the fluid issues when he is more stable with his breathing. We are hoping that the fluid in his lung is not wet chest which could cause future lung collapse, this would not be good at all. Praying for the best....
Like I said before, Tyson is off of all sedatives, which is why he is awake more often now. He is still on heparine (an anti-coagulant to prevent blood clotting) and small amounts of morphine and a few others that I am not sure what they are or what they do. (Sorry, I can't remember everything!)

Tyson also has tolerated his feeds better. They have increased his intake to 22 ml, which he is digesting well. The goal is to get him up to 2 oz where he should be for his age.

I had Marg (G) and Jenn VdS come down for a visit today. Then later Ed and Gwen came in after visiting with Ed's Dad. In the evening, Rob and Anne came over as well as Robert. It is so nice to have company, especially with Brian back in Orangeville. However, I am now going to have to start writing things down in my notebook because I totally forgot about Rob and Anne coming! I was on my way down the stairs to meet Robert at 7:30 and Anne just happened to be sitting there.....apparently we had made arrangements with them to meet at 7 pm but I must have totally forgotten! Good thing I was at least counting on Robert's visit, or else Rob and Anne might not have found me! (If this ever happens in the future, go to the CCCU on the second floor and have reception buzz Tyson's room to look for me. If I'm not there, I am on the computer on the fourth floor - in the Cardiac Diagnostic Unit! LOL)

If anyone wants to get a hold of me please call Brian or Karen VS for my hotel numbers.

So that's my update for today. In your prayers tonight and tomorrow, please pray that Tyson's extubation goes well and that he can breathe strongly on his own, and that his lungs stay clear. I am a little worried about a lung collapsing but realize God is still in control of those things too!

Mel:)





4 comments:

willowsprite said...

Praying all goes well tomorrow. Thanks for the updates!
Love,
Stu and Sherri

Melanie said...

Hey Melissa! We are glad to hear that Tyson is doing well! Hopefully all goes as planned this morning and you can hold your little boy in your arms. I'm sure you will be thrilled! Praying for you all, Jay, Mel, Jaidynn and Tyson's little buddy

Jeff and Karen said...

Hey Mel
I changed the info for you....
We hope and pray that all will go well without the ventilator today...
k

Anonymous said...

Hey guys,
You have all been in our thoughts and prayers so much lately! It brings back many memories, yet every situation is so unique. HSC is a great place, yet it is greater to know that God will never leave you or forsake you! Continue to rely on Him!
Andy & Arlene and family