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 Six Post-Norwood - Wednesday, December 10, 2008

"Be joyful in hope,
patient in affliction,
faithful in prayer."
Romans 12:12
Tyson was unfortunately still not extubated today. There have been concerns about the fluid in and around his right lung. The fluid around his lungs is very minimal and of no real concern since it usually drains itself once he is off ventilation. But even the surgeon is baffled by what is causing the fluid in the lung, because if it was an infection of some sort, it would be in both lungs.
We had learned early this morning that Tyson would have to have a chest tube put back in (one of the tubes that was taken out on Monday morning - this would be kind of taking a step backward instead of forward...) but then later this morning they changed their mind and said that the chest tube wouldn't be needed.
When I visited Tyson this afternoon, the nurse said yes, they would be taking him to IGT (Image Guided Therapy) tomorrow to have the chest tube re-inserted so that the fluid could drain. So nobody really knows for sure what is happening. I am supposed to be meeting with one of the doctors later this evening to figure out for sure what is going on.
The problem is a bit of a vicious circle. If Tyson was off ventilation, he could excrete the fluid better himself by coughing it up, etc. But they don't want to exubate him until they know what the fluid is. So it seems kinda like nobody really knows how to move forward until Tyson figures out what he is going to do about it. The ventilator is still turned off, while being on CPAP support mode (Tyson initiates all breathing on his own while the machine just supports him.) When they tried to turn his PEEPS down this morning, (please don't ask me to explain that one) he wasn't ready for that yet, so they had to keep him on support mode. Basically it looks like it's going to be a waiting game until Tyson can either cough up that fluid or figure out how to breath completely unsupported. So we have to patient. I know that Tyson will figure it out when he is good and ready. Once he is off ventilation, I can hold him again. But I have to be patient.
The doctors lean towards the fluid being lymphatic fluid, caused by a small nick in one of Tyson's lymph nodes. It is possible that during the surgery one of his lymph nodes were nicked and they are now leaking into his lung. If this is the case, it wouldn't mean long-term effects for Tyson since it would most likely heal itself in 6-8 weeks. BUT.... it would mean some more emotional effects on ME, because Tyson would not be allowed to have any breastmilk until after that time, since the fat in breast milk can affect the healing of the lymph node. This is a bit upsetting for me right now, but I am going to have to learn to be patient! Pumping is still going ok but of course, it's more effective and certainly more rewarding to actually be nursing a baby, not a pump! It is hard for me since there is nothing I can do for my son at this time except possibly provide some nutrients and nourishment but I can't even do that right now! And it's hard having him still on ventilation and possibly another chest tube, because that means I still can't hold him! It's hard....I have to be patient....but I had opportunity to squeeze my older two boys extra hard today!
We had a great visit with our boys again. They were thrilled not to have to go to school today since they got to meet the Toronto Maple Leafs!!!!! There are some pics below of some of the players, Kaberle and Kubina for sure and I have no idea who the other one was.....Brian told me but I forget who it is.
The whole team was there today visiting each floor...and they happened to be there at Marnie's Lounge while my kids were playing air hockey with Grandma and Grandpa Kottelenberg! We got some nice pictures and the boys got a Maple Leaf bag full of Maple Leaf goodies: pencil, erasers, funky hats, flags, puzzles, autographed photos, etc...full of goodies! The boys didn't get to have pictures taken with the players though, because they were busy with the patients from the hospital and Brian was not about to barge in and disturb them just to get pics with our kids. LOL
Brian thought it was pretty cool too! Once while they were in the elevator, Brian's Dad nudged him and said, "You better behave now!" And Brian turned around to see Ron Wilson smiling away at him! Oh what a fun and busy day!

Speaking of busy, Brian and I were also busy moving our things from the hospital parent room to the Days Inn on Yonge and Carlton. I got a phone call from Ronald McDonald House today who said that our name has been moved to the top of their waiting list and in the meantime, we can enjoy a complimentary stay at the Days Inn Hotel for as long as Tyson is in Critical Care. So since we are most likely going to be bumped from the parent room soon enough (to give priority to other parents who might need it more), we decided to jump on the offer and move out. So Brian helped me move everything over this afternoon while our kids were oogling over the Maple Leafs (although I am sure Brian would rather have been there!) The room includes two double beds and a tv, so if we wanted to have our kids stay over night with us sometime, we have that option. It means I will be walking to the hospital in the morning and back again at nights, but I like the idea of having a bed to sleep in (as opposed to a pull-out couch) and my own bathroom and shower, my own fridge, and I will have a tv to watch for those nights that I might have trouble sleeping. There's also a pool and hot tub, etc there so if we had the kids over one weekend they could enjoy that as well. We are hoping not to be here too much longer and then be in a room on the 4th floor with Tyson, at which time we would have a bed, tv, bathroom, etc. But again, we have to be PATIENT!
So that is what is up for today. Brian went back to Orangeville today with the boys and will hopefully be back to see me again on Friday night. Saturday is my parents 35th wedding anniversary celebration and we hope to go back to Orangeville for that too. I have made arrangements to rent a pump and will also take it back to the Days Inn with me, since i think they charge a flat rate after a certain length of time using it. And seeing as I might not be nursing Tyson yet even after we go home (depending on if they can figure out what the fluid is or not...) then it will come in handy at home too.

I was talking with Keith today (remember the Christian couple we met whose son had the same surgery as Tyson 6 months ago) and he says there is a way they can still feed Tyson breastmilk called an EBM study. It basically involves skimming all the fat from the breastmilk and giving it to them that way, then they still get the nutrients and antibodies from their mother. This protagin stuff they give instead does not really put fat on their bodies like breastmilk can. So I will talk to the head dietitian Sara Farmer sometime tomorrow about that. Another waiting game.....

That's all for now,
Mel:)

10 comments:

Anonymous said...

Patience. I've always wondered why they don't bottle that stuff and sell it - we would all love some!! We will pray that you will have the strength and yes patience! to endure the waiting; and for Tyson's full recovery. It is so hard to understand the ways of our Father but we must remember that He has a plan for all His children and cares for them always! Rest on him.
God Bless
Gerry & Margaret + kids

Anonymous said...

Hey Brian and Mel,
Thank you so much for posting every day about Tyson's recovery. You are in our prayers daily! Mel, I just wanted to let you know that I have been exclusively pumping breastmilk for my 4 1/2 month old for 4 months - and yes it is quite the committment and a little awkward at times. While I am pumping for much different reasons, it was still for a medical reason. I'm not sure what your insurance is like, but I spoke to mine and they covered 90% of a purchase cost of a new pump, so I didn't have to worry about rental costs. Just thought I would let you know; it might come in handy to have your own, especially if you are going to pump for a while. Mine is called the Medela Pump n' Style. It is an electric double pump - works great!
I hope you get some rest tonight - remember to cast all your cares on Him!!!
Dina & Josh and Hailey Roodzant

Melanie said...

And Karen thought Aaron was jealous when your kids got to skip school...just wait till the find out about the Leafs! LOL!! Your boys look thrilled! So cute!! We had a good chat with Brian when he picked Kenni up and will be praying that the Lord blesses you with the patience that you need at this time and also in the future. Love you seesta!!

Jay, Mel, Jaidynn and Tyson's little buddy

Anonymous said...

Nice to see the boys had a great day yesterday. Seeing all those Leafs must have made it extra special.
I pray they can find out the reason for the fluid soon and may you receive the patience you need to deal with this setback.
A good sleep on a good bed can work wonders too!
Phillipians 4: 13
" I can do all things through Him who gives me strength."
Our thoughts and prayers are with you all.
Hendrix and Betty Bouwers

Jeff and Karen said...

Wow! Those boys are going to tear something if they smile any larger! What huge excitement for them - skipping school AND seeing the TML's! I can't wait to show the boys! I'm sure Aaron will be excited to tell us all of Braden's stories today after school!
You guys have been a good example for us all, Mel. This has been such a good reminder for all of us as to how fragile life is. We take so much for granted and we have so many of our own plans for this or that without remembering that things can change so quickly.
"In his heart a man plans his course, but the LORD determines his steps." Proverbs 16:9.
You are constantly in our thoughts and prayers.
love
k

Anonymous said...

May God grant you peace and patience during this difficult time. You and Tyson are daily in my prayers. It must have been so nice to see your boys though. Looks like they had a great time meeting the Leafs. You must be thrilled to have a nice comfortable stay at the hotel. God bless you all!

Anonymous said...

Oopps! Fortgot to leave my name above,

God bless from Sarah and Steve Douma (and the boys)

Anonymous said...

Hey Mel
Thanks for such detailed updates. It sure helps us all understand what you are experiencing. I can't even imagine it. Praying daily for Tyson's speedy recovery. We will pray for patience too. Must be frustrating to have his progress go two steps forward and than 1 step back. Can't wait to see you Friday eve. Let us know if we can bring anything. Good to know you are at the top of the list for the Ronald McDonald house. DId you know .10 cents from every Happy Meal sold goes towards the ROnald McDonald house? So I have contributed greatly to it since I am forever at McD's!!
Take care, see you soon. Praying for you daily.
Lea, Derek and kids

Linda T said...

We saw on the news that the Leafs were at the hospital - lucky boys to have met them.

We are glad to hear that you are being taken care of, Melissa. The hotel room must feel a little luxurious compared to your bunk room. When Zach was in the NICU after he was born (for 9 days), I got quite bored in the bunk room. It was nice to be close to Zach, but after a while it got boring watching a little one recover (not much action).

Hang in there; we hope the time will fly by and that soon your whole family will be under one roof once again.

Linda, Jay & boys

Anonymous said...

Hi Brian and Mel, just wanted to let you know you are in our thoughts and prayers. We pray the Lord will guide the doctors who are looking over your little guy, and that Tyson is given the strength he needs to make a full recovery. Also that you are granted the strength and patience during this difficult time.
Greg & Jolene Lodder