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 Two Post-Fontan

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. "
Romans 5: 1-5

Really quick update because the grumpy bear is finally sleeping and I don't want him to wake up and find Mama Bear gone...

(Ok so now Tyson and Brian are watching the hockey game together, so I have time to elaborate on this update....and in the process of me updating this post, some of your comments got deleted, sorry!)

Tyson is in his own room on 4D Yay!
Pacemaker gone for now Yay!
All PIV lines gone Yay!
No more O2 Yay!
He's keeping fluids down Yay!
Went for walk in stroller Yay!

We received four Toronto Maple Leafs tickets for us and the boys through the Cardiac Kids program here at Sick Kids. Jonas Gustavsson sponsored them this time, and dropped off a box full of them. Please don't tell Braden and Merrick yet, we want to tell them ourselves on Saturday when we see them:) Brian is just beside himself, he honestly almost cried when we heard the news!
Tyson has been eating/drinking better today. He did have a hard time this morning yet, and we ended up wearing most of what he drank, but since then we've been pacing him better. It's so hard because he is so thirsty, his tummy is so empty, but he is still feeling a bit nauseous from the anasthetic and the surgery itself. He had some milk and Cheerios earlier today and for dinner tonight he managed 250 ml of milk (whoa!) and half a bun.

It was a pretty rough day for Tyson today, which in turn makes for a pretty rough day for Mama Bear. But hey, a rough day on 4D is still better than any day in CCCU! Tyson is still in a great deal of pain but we've asked for morphine round the clock tonight and tomorrow to manage the pain. The Tylenol and Advil were just not enough.

Tyson spent most of the day whining, crying, sleeping short bursts, screaming at me, being demanding, smacking me, and being woken up by various people. No sleep and too much pain means very grouchy child. But I still love him :)

The three JP drains (chest tubes) are still draining a LOT, so they won't be coming out anytime soon. So far there is no milky white fluid draining...that woud mean chylothorax. We'll see what happens once he starts eating higher fat foods. That's usually when it would start leaking chylothorax if he had it. They don't test for chyl until day 5 so we won't know for sure if he has it till then. (But SO FAR there are no signs of it.) The 3 tubes come out of his chest, are about 6-10 inches long, and have a clear bulb at the end which catches the fluid from inside his chest. It is mostly watery blood coming out, and it is typical to have a lot of drainage after the Fontan, but they are draining a bit more than typical. Once there is minimal drainage they can come out, but not until it is under control or else he might drown in the fluid ;P The biggest pain about them is that they get in the way all the time, so Tyson can't just roll over if he wants to roll over, and when we want to take him out to sit with him, we always have to secure them so they don't put too much pressue on the insertion area. For those who've seen Tyson's scarred chest, you know that the scars from the chest tubes are actually more noticable than his chest incision itself. It's because the tubes are quite thick to allow proper drainage (about as wide as a straw?) and they are stitched into place so they don't shift in and out. When the nurse was changing the tube dressings, I had a good look and boy, they look pretty painful! Poor guy! But sooner or later they will come out and I'm sure Tyson will feel like a new man!

Tyson has an echo scheduled for 9am tomorrow morning. Because of his age and activity level, it's another sedate echo, so he won't be allowed to drink any milk past 2 am (he better be sleeping then anyway!) and no fluids past 6am...hopefully the echo will tell us more about the heart rate problem.

Tyson's heart rate issue is called "junctional rhythm" for those who understand that. It basically means that the upper part of the atriums, which are supposed to originate the heart's beat, are not originating at all. So the lower part of atrium is hesitating a bit, because it's waiting for the upper part to initiate the beat; thus the lower heart rate.

The heart rate is now high 90s/low 100s...not terribly bad but not the best either. Lower heart rate could cause light-headedness, dizziness, lethargy and less activity. We shall see what happens, give it some time.

The O2 sats are in mid 80s. Because of the fenestration, (a hole created by surgeons to relieve some pressure in the heart) his sats won't be as high as they would normally after Fontan. Typically after a Fontan we should see mid-to-high 90s. Since he has a fenestration, they won't be quite that high until after the fenestration is closed in the cath lab in 6-12 months.

We enjoyed a visit from Brian's parents. I didn't get to see too much of them since Mr Grouchy Bear occupied much of my time today.

I just wanted to share with you a story that I haven't had to time to share with you yet. I think you may think it's cute :)
On the morning of the surgery, we and Tyson were hanging out in the toy room on 4D waiting for the nurse to call us for surgery. Tyson was happily playing with the train set, and then out of the blue, he got this far-away look on his face like he was thinking really hard about something. So he walked up to Brian and I and was saying something neither of us could understand. He was saying "Ard. Ard." I kinda looked confused, thinking, "What's hard?" So I asked him, "What are you saying, Tyson? I don't understand you. Say it again." He said it again, "Ard." But only until he lifted up his shirt for us did I realize that he was saying "heart." Then I started crying of course, because he did understand what was happening to him, at least a little bit :) In the days/weeks prior to surgery, we had told Tyson a few times that he was going to Sick Kids and they are going to do some more work on his heart. He would lift up his shirt and point to his zipper. We didn't know how much he would understand but thought we'd at least give him some sort of warning, so that he was at least a little prepared in case he did understand. Well, now we know he did understand, at least a little bit.
Today he was telling me "Owie ard." :( Poor little fella.

That's the update for today. Being on 4D means we're doing much more for Tyson on our own, so it's harder to get out to do an update. We'll still try to do them daily though.

Thanks for your prayers!
Brian and Mel:)

7 comments:

Anonymous said...

Wow! It sounds like you had an exhausting day! Wishing you all strenth and perserverance (and patience:).
Tyson's fighting spirit shows how strong he is!
You're constantly in our prayers...
Dave, Melissa & Girls

Aukema Family said...

SO happy about some of the great things happening today but knowing of course we need to keep praying for buddy:)
Hope you guys get a good night sleep tonight.
What a special little boy ♥
keeping you in our thoughts and prayers, love us... tyson's farm entertainment...

Aukema family said...

How'd you score such great games seats and tickets? Have an AWESOME time...

Joanneke said...

Its so good to hear that you're in 4D already! God most certainly hears our prayers! But yes, now that he's older and able to communicate, its going to be tougher on all of you. I pray that you will continue to have patience and love to shower on Tyson, because even though its completely understandable that he's like that, it can really wear you down after a while. Your story was very moving. They understand more than you think!

Mel said...

Awww that brought tears to my eyes "Owie Ard"...poor guy! But he is doing sooo well!! Praying that he continues to improve at such a fantastic rate. And praying for patience for you and Brian...dealing with a grumpy hurting boy must definitely be trying at times. Love you!!

Anonymous said...

I just want to hug you all , wow what a strong little man you got there!! We're holding you in our prayers, and what a comfort to know that God not only is our comforter, but a healer. When you feel down look up, your not a lone. Thinking of you all, and praying lots. Your a strong family!! All the best and thanks so much for the details!.
Jerome and Char

willowsprite said...

Thinking and praying for you all everyday! Love the little story at the end.
♥ Sherri