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 Eleven Post-Glenn - Saturday, May 23, 2009

"I will praise you, O LORD, with all my heart;
I will tell of all your wonders.
I will be glad and rejoice in you;
I will sing praise to your name, O Most High.
Psalm 9:1,2
This is the first day since Tyson's surgery that Brian and I feel that the end is maybe in sight! Tyson's sats have continued to improve over the past two days and today they were in the mid-to-high 70's all day; we even saw a few 80's in there. This is more of what we want to see! The plan is to continue weaning him off the vent until his pressure supports and oxygen concentrations are on the lowest they can go, then they will extubate, and then we should be on the home stretch. As long as Ty continues to do well overnight and they can wean him from the vent even more, they are aiming at Sunday or Monday for extubating. We are praying for this to be true! (Preferably Sunday but that may be pushing it?!)
Once the ventilator is gone, the meds can be taken orally and so can the milk! Either bottle or breast, we are not sure yet, but I am hoping to start feeding him again as soon as possible because I am pretty sick of the "milking parlour."
Yesterday there was no update because we were pretty busy with our kids. I was able to attend Braden's Field Day and it was great for me to get out of the hospital for the day. We all spent the night at the Days Inn, compliments of the Jennifer Ashleigh Children's Charity. This morning we did some swimming at the hotel and then spent the rest of the day at Sick Kids in the Play Park and at Marnie's Lounge. My Mom and Dad visited in the afternoon and then took the brats home again later in the day.
Today we received a phone call from Ronald McDonald house and they had an opening for us! So we moved our things over to the house, which is a five minute walk from the hospital. The room has two double beds, two dressers, a bathroom, a tv, cleaning supplies, and we share a kitchen and laundry room with 4 other rooms on our floor. The kitchen comes equipped with a kettle, microwave, fridge, stove, etc. and there's also access to a barbeque on the deck. There's even a games room and lounge area on the second floor for our other kids to enjoy, with Nintendo and a big-screen tv, fooz ball, air hockey, and a computer with Internet access too! So if Tyson's stay in ICU becomes longer than we hope, we can do some groceries and have all the luxuries that we have at home. (Did you know that the Ronald McDonald House even has a school for siblings of patients that are staying in the hospital for even longer periods of time - like for organ transplants or cancer patients? Isn't that cool?)
Brian and I are very thankful for how God has provided for us during Tyson's four hospital stays so far. We've never gone without food or somewhere to sleep. Some beds have been better than others, but we are thankful for a place to lay our heads!
Today Tyson managed to wiggle out of yet another PIV line, one that they just put in last night! They use this line for his morphine drip, and to administer his two antibiotics and lasix. The nurse was going to speak with the fellow tonight to see if Tyson really needs another IV or not. Then they can stop his morphine infusion and just give him oral antibiotics and lasix through the Ng tube, and an oral form of morphine through Ng when needed. We'll find out more about that later tonight. I am hopeful that they won't have to put in another PIV line, because this means that the doctors are also admitting that Tyson is one more little step towards recovery!
That's the update for today. We would like you to keep praying for Tyson's speedy recovery and that he can move to the fourth floor soon.
Have a blessed Lord's Day tomorrow everyone!
Brian and Mel:)

3 comments:

Mel said...

YAY that is so EXCITING!!!! It is taking a little longer than anticipated, but it seems that hopefully Tyson is on the mend! We continue to remember you all in our prayers daily. Hope you had a FANTASTIC weekend with the kiddies.
Love you!!

Chris & Vicki said...

Great news, Brian & Mel! It is our prayer that Tyson continues on this road to recovery. May He continue to grant you peace and patience during this journey!

Lea and Derek said...

Way to go Tyson!! Quite the little fighter isn't he?
Hope he continues on this positive road to recovery.
Praying for you daily!
Lea and Derek