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!

WE'RE MOVING UP! Tuesday, December 16, 2008


"The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song."
Psalm 28:7



Today was another AMAZING day with Tyson's progress! This morning the nurses took out the arterial line in his leg and I also got to give him a bath. He actually is wearing clothes now too since he is no longer in the bed with the overhead heater but in a "real" crib now. We started bottle feeding him too! Once he can comfortably take at least 2 oz from a bottle, they will also take out his Ng tube. For now, he is taking about 1 oz at a time and the rest goes in his Ng tube. I am spending only 15 minutes at a time giving him the bottle, and then the rest will go into his tube. This is because they do not want Tyson burning too much energy on sucking and then he won't be interested in the next feeding.

Last night they gave Tyson a blood transfusion because his sat's were lowering and he wasn't getting enough oxygen. With all the bloodwork that they take all the time (every hour right after surgery, then every 4 hours, now it's down to every 12 hours) his hemoglobin level was low. So now his levels are back to normal and he is breathing well again.
This morning Vicki and Melissa W came to visit and they also took me out for lunch. It was nice to see them again. This afternoon Brian's parents came with Tante Hanna for a visit. This visit was a lot shorter than we had hoped for, since Brian's Dad helped me move things from my hotel room. I didn't get to see much of Mom or Tante Hanna but I am thankful that I got things moved out of my hotel room.

The plan as of this morning was that I would move directly into a private room with Tyson and skip the "Step Down" room altogether! This was because Tyson has made so much progress in the last 48 hours and he has pretty much done everything that he needs to do in Step Down (getting rid of tubes, introducing bottle feeding, etc.) But as of now, because of staffing issues, we will be moving to Step Down after all. This means he will be in a room with three other babies before moving into our own private room. I haven't checked out of the hotel yet because I know that there are always little glitches along the way. I didn't want to be left without a place to lay my weary head! So I will most likely be spending one more night in the hotel, it just means I have to take some minimal things with me since we moved everything over to the hospital already! LOL There is a possibility that there will be a place for me to stay on the fourth floor but nothing is ever known for sure until later in the evening.

Our Social Worker Mayola informed us that we do not need to check out of our hotel until Tyson is discharged, just in case he for some reason has to be moved back to ICU. Then we wouldn't want to be without a place to stay. So it looks like Brian and the kids will have a place to stay this weekend if they come up to visit, which is loosely in the plans, but nowadays we don't know anything for sure! We have requested a travel attestation to celebrate Lord's Supper in Toronto, since we will be missing it in Orangeville. Either way Brian and I will be in Toronto for the weekend, but we aren't sure yet about the kids. It all depends on where Tyson is.

So as of right now, Tyson is still in ICU but will be moving later tonight, and I will most likely be staying at the hotel again until we are in a private room. If all things go very well, we could very well make it home in time for Christmas, or shortly thereafter! We have been praying that we can be home for Christmas, for the sake of our family life. It would be so much better to celebrate and enjoy the holiday season if we were altogether. But we will have to be patient and wait to see if that is what God also has planned for us too!

I feel so encouraged and optimistic about Tyson's recovery today! Yesterday was a great day too, but considering Tyson's respiratory difficulties and the collapsed lung that Tyson struggled with on Saturday and Sunday, we are amazed at God's goodness and grace in his life! All praise and glory be to Him alone!
As for the possibility of me beginning to nurse Tyson, it looks like they want to err on the side of caution and continue with the portagin. Seeing as the fluid disappeared so quickly, they cannot say for sure if this was a result of the portagin or not. The nutritionalist would like to stay on the course we are on and continue with portagin, but the cardiologists upstairs may differ in their opinion. For now, we are continuing with portagin. The problem is this: if I start breastfeeding and the fluid does return, then we know for sure it is chylothorax. And then we have to begin portagin again and start counting 6 weeks from that date. If we stay on this course, at least we are a week ahead of the game and I can begin nursing in about 5 weeks time. This means that I would be beginning breastfeeding at home, and I would definitely be calling in the help of my trusted Robin Berger (lactation consultant who I have known since Braden was born 7 years ago) and I am sure she could help me find a way to get that little guy to nurse. I am not too concerned about nipple confusion, at least this way maybe one of my babies will actually take a bottle when I need them to! LOL
So that's the update for today. Hopefully I will have some more good news tomorrow!

Take care,

Mel:)

12 comments:

Eric and Jaclyn said...

Oh Melissa!!!!! That is soooo great to hear! The LORD is GOOD :)
I cried reading your good news. That would be wonderful if you got to be home for christmas! And even if it doesn't work out, I pray for you to have peace.
Tyson is looking like such a 'big boy'. I yelled out loud when I saw the picture of you feeding him a bottle :D. It is so nice to see you holding him....*tears* :)
Have a wonderful evening, and I am looking forward to another update tomorrow!
love, jac

Garth and Alida said...

Wow! Incredible news! When I saw the picture of Tyson "sitting up" I called the kids - everyone came running and we're all very excited! He looks so good!
May all praise be to God, the maker the giver of life, who holds all things in His hands. It's amazing how we learn a new appreciation for life, for health, and for God's always-present care in our lives. Just as we have shared your tears of sadness and fear, we now share your tears of joy and thankfulness!

Garth and Alida

Michelle said...

I can't believe how much progress Tyson has made in such a short time! I'm soo incredibly happy for you guys and thankful that God has been taking extra special care of you little boy! I can't get over how good he looks, although it's actually kinda hard to see the pics properly thru tears!
I really hope that you can all be home with family for Christmas! What an extra-special holiday season that would be!
Hugs & Kisses from Michelle, Joshua, Evan, Tyler

Johnand Hilda Spanninga said...

God is Faithful!!! W-o-w!!! What great progress. When I saw the pictures, I called the kid. You should of seen how excited they were. Kenni was jumping up and down excited that Tyson was drinking from a bottle and that you were feeding him. Braden was beaming from ear to ear. He said hey, all the tubes are gone except one and couldn't wait for me to read the whole blog. Merrick was smiling and laughing. Tyson looks so-o-o cute sitting up and in his undershirt.There sure was lots of excitement here.

Anonymous said...

Hey Mel & Brian,

We're praising God with you over the great news. I couldn't believe the picture of him sitting up either. What a cutie :)
Praying all continues to go well.
fellow 7th liners Ed Teresa David Michael

Melanie said...

YAYAYAYAY I am sooooooo excited for you guys! Ooo this is awesome! The Lord is soooo good!! I am so happy that Tyson is doing so well...I just don't know how to express it without giving you the world's biggest hug...so here...I am sending you the world's biggest hug...and maybe even a little bit of jumping up and down in excitement. I can't wait to tell Jay when he gets home! We pray that Tyson continues to heal this well and that he (and you) will be home soon!!!!!!!

Lots and lots of love:
Jay, Mel, Jaidynn and Tyson's little buddy

Tanya said...

Wow!! Can't think of anything more to add to what people have already said (except that now he REALLY looks like Braden)!! So happy for you!
Can't wait until we can come see him again and especially until you are home. We continue to pray that day will come soon!!
God bless. Scott, Tanya & Kate

Jeff and Karen said...

Praise God!!
We hope that Tyson's recovery will continue to move foreward!
Give Tyson another hug for me! I am itching to hold that littl guy!!

k

Jeff and Hetti said...

Hey Guys,

We are happy to hear that things are going so well! We will continue to pray for good progress and strength needed for all things. We are thinking about coming to visit this weekend (possibly Fri. evening, but will call Karen VS for your contact info. first) Maybe we'll see you then. Hang in there! Jeff and Hetti

Anonymous said...

How amazing that Tyson has come so far in one day.The Lord is GOOD!Praying that you may all be home together in the near future.
Betty Bouwers

Anonymous said...

Many thanks to God for these amazing improvements in Tyson!! He looks so sweet sitting up! And eating from a bottle?? Amazing! We are so happy for his progress. Can't wait to see him again and hopefully hold him too!

Lea, Derek and kiddies

Anne said...

Awesome news! I was sooo happy to read this blog! Enjoy your little guy! We are praying that you may be home soon and thanking God for His care in Tyson's recovery!