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 Nine Post-Fontan

"Be still before the LORD
and wait patiently before Him."
Psalm 37: 7

Yogi Bear and BooBoo came for a visit.



Tyson just LOVED them :)

Tyson on the left, hugging Boo Boo.
Conrad on the right, hugging Yogi Bear.


We also had a visit from Clutter the Clown.
As part of the "Clown therapy" program at Sick
Kids, which, up until today I thought was a joke :)
Tyson LOVED the toys she brought!


The Three Muskateers

All the same size :)

Tyson (2), Conrad (4), Parker (3 )

I can tell that today was a big cardiac surgery day. There are a few new families roaming the halls and all of the friends Tyson and I have made in the last week have been discharged and are gone home to make room for more patients. But not us, we're still here. Even two familes whose sons had surgery same day as Tyson both went home last week. But not us, we're still here.

Today was another happy day for Tyson, but I sure shed a lot of tears today. This morning we were given "false hope" that we'd be going home today. I wasn't totally surprised to hear that, since I've been keeping on eye of the drainage, and I knew that he drained so little yesterday that it was less than 50 mls. Dr. Benson, the cardiologist here on 4D saw Tyson running around in the halls yesterday chasing soccer balls and wacking things with his hockey stick, and he said to me, "This boy needs to go home."

This morning on rounds, the team said they wanted to do a set of chest x-rays and, as long as they looked good, they'd pull the last JP today and send us HOME today! Dr. Benson waved at me this morning after the nurse practitioner had given her report on Tyson and said "Good-bye!" I was pretty happy, but I knew that I shouldn't get my hopes up too too much, because anything can happen. But when you hear the word "home" on rounds, it's hard NOT to get my hopes up.

Anyway, chest x-ray revealed a small accumulation of fluid on the bottom of the right lung. The nurse practitioner (NP) estimated it was about 10 mls of fluid. Sometimes when one JP is pulled, the other one tends to start draining more because it starts doing the work of two or three drains. In order to get the last bit of fluid out, they put the JP on suction again (they just squeeze the rubber bulb flat so that as it re-inflates, it sucks the fluid out.) Once the bulb was squeezed, fluid immediately started pouring out. Like, more then the estimate 10 mls of fluid in his right lung. So for today this JP is over its "daily limit" and will not be pulled. Since their daily limits run on a 24 hour basis, the JP will need to go all day tomorrow (Friday, 12 am - 11:59 pm) with less than 50 mls of fluid. But at the rate it's going now, it won't be pulled tomorrow either. So we most likely will be going home with the JP in, maybe sometime this weekend.

In addition, we had some decisions to make today. Ronald Mc Donald House called with an available room for us! I was asking the charge nurse what she thought I should do, since we are potentially so close to going home anyway. She said, "By all means, take the room! This time of year it is so difficult to get in, and RMH is there so that families can be together, especially for the holidays!" She pretty much said we'd be stupid not to take the room. So I went down there this afternoon to fill out the paperwork. I won't be using the room tonight, but at least our family can be together for the weekend, and if things take a turn and Ty's stay is prolonged into the holidays, we can still all be together. If things went downhill and we gave up the opportunity to stay at RMH, we'd never ever get back in again. Even the people at RMH totally understood and said at this time of year, you don't say no to a room at RMH :)

We had to make another decision today. I hate making decisions when I'm not the medical professional. The NP really "feels" that Tyson should be on the minimal fat diet. This was not an "order" from the cardiologist, but a recommendation from the NP. She has been concerned about the amount of drainage right from day one, and also concerned with the high level of the triglycerides (fats) in the JP fluid right from day one. The higher the triglyceride content in the fluid, the more likely the fluid is to accumulate in the chest cavity, rather than distributing itself over the entire body like it's supposed to do, to be sweat out, or peed out. Erica has talked about the minimal fat diet to us before, and I know that in her heart she felt that it would be in Tyson's best interest to restrict his fat intake. But I've been resisting this option for a few days, because based on Tyson's numbers, he doesn't need to be "ordered" to go on the diet. If the triglyceride number is 1.1, the cardiologist orders a minimal fat diet. Tyson's level was 0.99. VERY close, very borderline. The NP has really been tearing her hair out with this, not WANTING us to have to recommend this, but really concerned about reaccumulation of fluid once the tube is pulled out. Reaccumulation of fluid can happen after the tube is pulled out, especially in children who've had large volumes of drainage like Tyson has. If reaccumulation happens, the fluid can aspirate into the lungs, Ty's sats would drop, and after some time he could become cyanotic (blue). Then we'd be back at Sick Kids, the JP tube would need to be re-inserted, there'd another lengthy hospital stay, and he'd be ordered to go on the minimal fat diet anyway.

There is no way of knowing IF any fluid will reaccumulate once the JP is pulled. So we could quite potentially pull the JP in a few days, continue on with Tyson's normal diet, and things could be totally fine.

But is it worth the risk?

I absolutely could not make that decision on my own. So I called Brian and bawled my eyes out to him about it. Maybe some of you sitting on the sidelines don't think it would that difficult of a decision to make. But a very over-tired Mom is ready to go home. I'm tired of the JP in, I'm tired of being woken up at 12 am for a stupid JP drain, I'm tired of nurses checking in on us every hour, I'm just so tired of being here. I skipped lunch today from talking to the pharamicist and others who "thought" we were going home. And Tyson is tired of being here. He needs to go home too.

Every ounce of my being does NOT want to have Tyson follow a minimal fat diet. He is a picky enough eater as it is, how is this going to work? At the same time, in the grand scheme of things, looking at how far God has brought Tyson, what's six weeks of managing Tyson's diet, allowing us the peace of mind that he won't get reaccumulation? Would I constantly over-analyze every little cough, thinking "Is the fluid reaccumulating?" That is no way to enjoy the holidays. So Brian and I came to the conclusion that an NP who follows her gut feelings rather than what "numbers" say is a GOOD nurse practitioner. It would be terrible if Tyson had a reaccumulation of fluid and we would totally regret not doing what we could to prevent it.

So. Decision. Made. Done. I would do anything for my son, especially considering all that God has allowed for him to be here with us today. God has granted us two years with him, despite his very messed up little heart. And as much as I love Sick Kids, I'm sick of being here and I don't want to come back because we pulled the tubes too soon and the fluid is reaccumulated. It means our other children are going to have to be very understanding that whenever they want chips or other high-fat snacks, they can't eat it in front of Tyson and may have to wait till he is napping. And I will have to adjust my cooking accordingly. I'm not sure how it will work to not let him have what we're having for dinner. Not sure how that will work, we'll see. Thankfully, Tyson loves bread. He's pretty picky when it comes to his fruits, but he will have to get used to it. No more peanut butter or chocolate spread on his bread. The diet is effective immediately, and so far Tyson has said nothing about the skim milk in his sippy cup. For dinner he had a piece of bread with nothing on it (!) and some apple sauce. He'll have to get his protein from fat-free yogurt and low-fat cheeses, because he can't have any meats. The dietician is coming tomorrow to go over everything with me.

I also had a visit with the pharmacist today about the warfarin. This is a pretty tricky drug and a lot of things can affect the INR level. We have to do weekly bloodwork to make sure the INR level is right. And anything can affect the INR level: changes in diet, colds/flus, vomiting, other medications. It's also imperative that Tyson NOT bang his head, or it can cause his brain to bleed. Great. How do you keep a 2 year old from banging his head? Especially Tyson's head? LOL We basically have to call Sick Kids anytime he has a hard bang to his head, and they will have to check him out. Bleeding in the brain can begin immediately after a fall, but the symptoms won't start till a few hours later. More tears when I heard this. (I'll tell ya, it was much easier when Tyson was on Enoxaparin injections, because he was way too young to bang his head on a coffee table or fall from a chair or couch.) It's all a bit overwhelming. And scary. But God has carried us through before, He will do it again.

Brian is coming to see me tomorrow night, we'll make decisions about our plans for the weekend. We would have to take a look at the drainage volume. If it is slowing down remarkably, we may wait here a few more days to pull the tube and then go home. Or we may be going home with the tube, and come back for JP removal once the fluid is down to under 50 mls per day.

For tonight, because it was such an emotional day and I am lacking in sleep, and because Tyson is stable and only still here because of his JPs, the nurse will be leaving us along ALL night! JP empty at 9:00pm, some vitals, some meds, and then letting us SLEEP! No hourly checks for sat levels, heart rate, etc. *aaaaahhhhhhh* Just what we need :)

Signing off,
Mel:)




















7 comments:

Anonymous said...

Oh Wow Mel, what an emotionally exhausting day. I can't even imagine how difficult all those descions would be. God will guide you thru it all, trust in Him.
Let us know if you aren't up for company Friday evening.
Lifting you up in our prayers always.
Love Lea and Derek

Anonymous said...

We are continually praying for you, that you can make the right decisions and that Tyson can continue with his recovery. God will continue to provide you with the strength that you need to get through it!

Gerald, Michelle & Family

Joanneke said...

Remember, the end is in sight! I hope you get a good sleep tonight, because I know how much lack of sleep can affect your perspective on things. We continue to hold you all up in prayer before our Father's throne who loves you all so much and will carry you through every step, especially when it gets burdensome.
The DVD is made and Josiah is giving it to Braden tomorrow (Fri.) They did an amazing job!!!

Gwen said...

Aw hon, praying for you during these emotionally draining days. Thanks for always being so thorough in your blog updates yet still letting your humour shine through. :) May you and Tyson both get the much needed sleep tonight. Thanking God that His mercies are new every morning! <3

Anonymous said...

LOVE the pictures - Tyson looks so good! Hope you have a great sleep and awake re-energized for another day! Hang in there - you're doing a great job and you'll be home soon.
You remain in our thoughts and prayers.

Anonymous said...

Gerry and Margaret :)(from above)

Anonymous said...

Hi Brian & Mel ... & Tyson,

We can't even imagine the frustration that you are feeling ... like being on a roller coaster that you can't get off of. We were so hoping we could visit you this week but it hasn't worked out ... between snow days and the funeral. I would love to come and give you a big hug!!! A virtual one will have to do for now :) We will keep trying. You are in our thoughts and prayers always and we pray especially that God will allow Tyson to come home soon! Keep seeking Him as your Comfort and Strength! Love you lots!

Grant & Marg ... Lindsay & Shaelyn