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!

Extubated! Thursday, April 9, 2009

"I will praise God's name in song and glorify him with thanksgiving." Psalm 69: 30
This morning Tyson was weaned from all the morphine and all sedatives, in preparation for an anticipated extubation sometime today. He also has been MPO all day (no food allowed) since 5 am. As a result, he was awake for a good portion of the day, but severely agitated by the ventilator and getting pretty hungry. He has been on IV to keep him hydrated enough, but that isn't the same thing as s full tummy! He was finally extubated at 4 pm and has responded well to breathing on his own. The nurse just started an Ng feed at 8 pm, going up to 2 oz now. It's still not as much as he was receiving from me before he was admitted, but it's better than nothing. They will give him more at 11 pm, and then every three hours thereafter.
We received some disappointing news today about his surgery. It is most likely going to be postponed until further notice. So, although we are happy to be coming home once he is well, we are a little worried about trying to keep him healthy until his surgery. One doctor said it will be postponed for a few weeks, another person said 6 weeks......but these plans are also subject to change, if Ty's surgeon or cardiologist disagree and decide to go ahead with surgery earlier. But as long as his heart is still healthy, it's not an emergency situation. The member from the surgical team who informed us of this this morning said it is better for Ty to enter surgery really strong as opposed to just recuperating from a virus.
All the blood cultures have come back negative, meaning no bacteria infection, and no bronchialitis, but it was definitely some sort of virus. So he has been taken off antibiotics (since they don't treat a virus but only bacterial infections), and he is no longer considered to be in isolation (although he hasn't changed rooms.) We are going to have to wait it out until the virus is gone. We are thinking a few more days in ICU and then a few days on 4D...then home....only to come back again in another little while for surgery. *sigh*
Tyson has had a fair amount of suctioning yesterday and today. Apparently we caught the virus early enough, before the mucous really started building. But it must have been one big bad virus to have collapsed his lung so early on! Good thing that we are in tune with Tyson and what is normal and abnormal for him or it could have been much more serious. We know that God is looking after him and we pray daily for strength from Him to be able to care for Tyson in the special way that he needs. Through this ordeal we have learned that Tyson really is different from other babies. Even though he appears to be normal and healthy-looking, things are much more serious for him if he gets sick. This reaffirms our decision to keep him out of places like church nurseries where he would be exposed to a large number of germs. It's funny how we thought he was so strong, and that the little "sniffle" he developed on Sunday was no big deal and he would get over it. But wow did it ever take a toll on him! Praise God that all things are going well and he appears to be on the mend.
Brian went back home this afternoon to enjoy our kids' Easter concert and a Good Friday service in Orangeville. I, on the other hand, am cooped up in a hospital and the only churches within walking distance from the hospital are "not my type." LOL Brian plans to come back here with the kids on Friday afternoon and we will spend Friday and Saturday together. The kids won't be able to see Tyson but at least they can see their Mom again and have some fun at Marnie's Lounge and maybe a swim at the hotel pool.
That's all for now. Wishing you all a joyous Easter weekend, thanking and praising God for His gift of grace to us in sending His only Son to endure our sins on the cross. In Christ alone our hope is found.
Mel:)

2 comments:

Anonymous said...

Hey Mel
Easter concert went well, we have it all on tape. As always, we are praying for Tyson and you guys. Hang in there! Enjoy the weekend with your kiddies! Kiss Tyson for us too!
Derek and Lea and kiddies

Joanneke said...

Hi Melissa,
We wish you much strength as you spend Good Friday on your own (at least the morning), and we hope and pray that you can all be reunited again soon (at home, that is!). Keep your chin up!
Love,
Joanneke