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 Seven Post-Fontan

"I know that the LORD is great,
that our Lord is greater than all gods.
The LORD does whatever pleases him,
in the heavens and on the earth,
in the seas and all their depths."
Psalm 135: 5, 6


It is now one week since Tyson has had his third open-heart surgery. God has been so very faithful, and has blessed Tyson with good health so far. Despite the excessive JP drainage, a few days of lower O2 sats, and a slightly lower heart rate than normal, there have been very few complications. For this we are very thankful to our Almighty God and Father!

The text above also describes how great our God is, greater than any other god, but the LORD does what pleases Him. So in all things, we must remember that everything goes according to His plan and He is in control of all things. Even when we speak about a going home date, it is always "the LORD willing." We saw first-hand how "in control" God is also this past November 18, which was the first surgery date for Tyson. For whatever reason, God changed those plans at the very last moment, and so we remember Who is in control, and that even if we have no idea in which direction our lives are going, we need to hold on to God's promises and TRUST that His ways are higher than our ways.



As I mentioned yesterday, the chyl tests came back negative but because the other levels were on the border-line, there was still a possibility that we might have to follow-through with a low-fat diet to minimize the JP drainage. The amount of drainage in the past 24 hours has been significantly less than before. At one time the JPs were draining over 300mls per day. Yesterday's amount was down to just over 80 mls, and today it looks like they're draining even less! :) They would like to see JP totals of 4 ml per kilo per day. Tyson is 13.5 kilos (he has lost the kilo of weight in fluid retention he had gained after surgery.) That means that they would like to see less than 54 mls of drainage in one day before they decide to pull the chest tubes out. We're getting closer! Now the question is this: wait a few more days on 4D till the drainage is minimal enough to pull the tubes...OR...send us home with JPs only to come back in a day or two to have them pulled. They will probably just wait till tomorrow morning's JP numbers are totalled before making the call. It looks like I most likely will be missing out on Merrick's Christmas assembly on Thursday. But hey, Braden got over it two years ago when I missed his assembly; I'm hoping Merrick will forgive me for not being able to attend. His mom is feeling called to be with his younger brother this time, so his Grandma will be going instead :)



I am happy to report that at rounds this morning, the staff cardiologist shook his head and frowned when the Nurse Practitioner asked about putting Tyson on the low-fat diet. When putting it into perspective, it wouldn't be the worst thing in the world to have to follow a different diet, but Tyson is picky enough about what he eats without having to complicate matters further. Lately he has been eating a high fat diet consisting mostly of milk, milk, and more milk! Before surgery I had to bribe him to drink milk instead of juice, now he doesn't even want to touch the juice at all :) He is also eating toast, mini-go yogurts, fries, chicken nuggets, apple sauce, and cheese. He hasn't really been interested in too much else yet. Like a typical toddler, his likes and dislikes for foods go in spurts.



Tyson has been very happy again today. He has decided he doesn't like to settle to sleep for the night until about 1:30 am, so then he is grumpy in the mornings, needing a morning and an afternoon nap. Today I was not going to let that happen again, as I really would like to retire a little earlier than 1:30 am!! So I kept him super busy till 1:30pm, allowing for only ONE nap today, like normal. He slept until past 4:00pm, so that is more like normal.



The trouble with hospital stays, is that there are constant interruptions through the night for meds, vitals, JP drainage, etc. And we don't have an outside view from our window; it's the inside of the hospital atrium. So there is light beaming in from both the door and the window at all hours of the night. I finally taped up a blanket to the door's window last night so at least we don't have to see the lights from the hospital hallway. The med scheduling here is ridiculous. I understand that they want to empty the JPs at 12 am so that they have an accurate total for the 24 hour day. I understand the need for vitals every 6 hours for kids recovering from cardiac surgery. But do they honestly think that once we get home, I am waking Ty up at 1 am for Lasix? Lasix (diuretic) is supposed to be given every 8 hours. I guess no matter what time it's given, we'd be interrupting either his night time sleep or a nap during the day. BUT is it really necessary to do JP drainage at 12am, Lasix at 1am, and then vitals at 3am? They want to interrupt us three times in the night? PLUS their routine check of O2 sats and heart rate every hour? I don't think so! LOL



Every night I go over with the night nurse what the plan is: how can we combine a few things together? Usually we end up doing Lasix, vitals and JP drainage all at 12 am and then they are supposed to leave us alone for the night. But two nights ago they were concerned about Ty's sats so they were in and out checking him, all night long. Last night went better in that regard. Tyson was settled by 9pm but for some odd reason was laying awake when I went back in the room to retire myself at 10:30! Then we both laid awake for a few hours. And when I know the nurse will be in at 12 am for meds/vitals/JPs, I don't settle myself till after 12 am. Now I've talked the nurse practitioner into changing the order for vitals to every 12 hours, since he is stable :)



I would LOVE to create a position at Sick Kids called the "sleep and meds coordinator," one who would go over with the Moms their baby's routines and when would be the best time to give this med or that med, when to do vitals, when to empty JPs. *sigh* Can't wait to get home and sleep in my own bed and get back into our own routines! :)



Over all, Tyson is happy today. He's talkative and laughable like his normal self, as long as he's on pain meds. He hasn't been on morphine now for a couple of days, just Advil and Tylenol. He has gotten pretty attached to his soother and blanket though...but we'll deal with that a little later once he's well.



Tyson is now able to run all around 4D, with his "big red balls" (sorry) hanging from his pants. LOL I must admit, it does look funny having his JPs clipped to his pants as he wanders around. But on the cardiac floor, it's all been seen and done before so no one looks strangely at him. He also enjoys just walking the halls hand-in-hand with me, playing on the ride-on toys, and spending time in the 4D playroom. Yesterday he had his hockey stick out and was chasing the ball down the halls, but him running down the halls was making me nervous. (Being on the blood thinners, I am nervous about head injuries too, which we all know he is prone to banging his head.) This afternoon we had the pleasure of playing without the portable sats monitor, so I didn't have to follow him around with the leash like I'm walking a little puppy dog. Two year olds are busy and I was having to chase after him with his "leash" so he wouldn't get tangled in the sats monitor's cord. Round and round and round the Thomas the Train table....and around some more! Now I won't have to do that, I can just sit in a chair and watch him play :)



Even though I am now here with Tyson by myself, and my scheduled company for the past two days has cancelled due to bad weather, it is MUCH easier to pass the time with Tyson mobile and able to play in the play room. With his other surgeries, he was still too young for that type of thing, so we mostly just stayed in his room and watched endless hours of tv. And in past surgeries, he also spent more time in CCU as opposed to 4D. The CCU rooms are darker and more depressing, so the days go by soooo slowly. On 4D, when I go to the playroom there are always other parents to meet or chat with. So it's going much better in that way. And I'm actually able to keep up with what day it is. (Speaking of which, HAPPY ANNIVERSARY MOM AND DAD!)



The other night while Tyson laid awake for a while and Brian and I tossed and turned, he started scratching at his incision and also managed to pull off the bandaids around where the chest tubes are inserted. He wounds are starting to heal, so things are getting itchy. Since his ECG leads are now off, it's easier to get a normal shirt on him. The shirts are tighter around the chest than a hospital gown, which was giving him easy access to scratch and damage the wounds. Since the bandaids were replaced yesterday and he's now wearing normal pajamas, the temptation isn't there as much anymore.



Wow, I started off thinking there wasn't much news to report, and it has turned out to be a pretty long blog post. LOL Well, what did you really expect from me? :)



Take care everyone, and thanks again for your prayers. Please keep praying that the JPS stop draining, so we can go home without them. And soon :) It is very realistic to be home for Christmas - the LORD willing. Please also pray for continued health for Tyson, and that he is able to understand and deal with his heart condition in the future.



Mel:)




8 comments:

Joanneke said...

I LOVE long blogs!! The little details are both interesting and helpful to understand how things are really going for you both. You still have your sense of humour which is a very good sign that you're coping well. I can just imagine that you would love to sleep in your own bed again. Another thing to look forward to....

gerryandmargaret said...

yeah i like long blogs too :) shows that melissa is doing well! and it sounds like Tyson is doing well too. So nice that you can "complain" about messed up naps, soother attachment etc. and not other serious complications. How things could be different! SO glad the end is in sight...
May you continue to rest in peace knowing the Father cares for Tyson; for you all.
Take care!
M

Tanya said...

So glad to hear you had a good day. I hope you were able to make your "lunch date" with that other Mom. I'm still sad that we couldn't make it today but will look forward to seeing you soon, hopefully at home!! (I might need to make another batch of those cupcakes though -- sorry. The good news is that I slightly over baked these ones so the next ones are sure to be even better!!)
We are definitely still praying and will continue to do so. Really looking forward to seeing Ty running around like himself again. Alex has been getting better at playing hockey (he practices ALL the time!!) so they can have a good game of it when Ty's up to it!!
Hugs from all of us here ... Tanya
(PS - Scott appreciated your final text of the day!! LOL)

Anonymous said...

Hi Mel
Thanks for keeping us updated, we are so hoping that your family will be together for the holidays!
Sorry we have not been able to come and visit yet, maybe, the Lord willing we will be able to come and visit when you are home soon.
Take care,
Leo and Joni

Aukema family said...

You would ROCK as a sleep & meds co-ordinator :)
So great to know how to pray for you both. SLEEP, no one bugging you both during the evening.
Praying you'll be home sometime around Christmas holidays.Praying for Bri Bra Mer Ken too ;)

Anonymous said...

It is good to hear about EVERYTHING. That way we can live along with you. The progress that Tyson has made is miraculous. We are so thankful. And it is good to notice you are holding up well. We praise God that he has blesssed all our prayers in these remarkable ways!
Marg

Anonymous said...

I hear ya about the frustation with the nighttime wakings...so understandable that you long for your own bed! Sounds like you might get there pretty soon though...wow! Thanking God with you all and still remembering your needs in our prayers.

Hetti

Jen said...

Hey Mel!
I loved this post!! You sound like you're almost having 'fun' at the hospitla! :)
You guys are troopers! Hang in there...(even if you are in there for Christmas) cause God is in 100%control:)
R&J