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!

Our Brave Warrior

"No king is saved by the size of his army;
no warrior escapes by his great strength."
Psalm 33:16


Recovering on 4D, eating
freezies and watching tv


Every time I hear the word "warrior" I think of Tyson. He sure is one brave boy! Yesterday again he showed us how strong of a fighter he truly is. When we reflect on the psalm above, we see that victory does not belong to us, but to the LORD. In Tyson's life too, we acknowledge God's mighty hand in him, leading him, guiding him, carrying him through the difficult times, giving him the will to keep on fighting. We know that Tyson is not a warrior in and of himself, but God keeps him strong. God deserves all the glory and praise! It is through God's grace that I can call Tyson my little heart warrior :)

Monday was a very LONG and difficult day for us all. We left the house at 5:30am and didn't get home again until 12:15am Tuesday morning. Tyson was admitted to 4D in the evening to continue under observation, but by 10:30 pm the cardiologist fellow on call gave us the go-ahead to go home if we wanted to. Since nobody really sleeps well in the hospital, we chose to make the trek home and curl up in our own beds. Tyson fell asleep on the way home, woke up at 6:45am and has been back in bed napping since 9:15am. He is zonked and understandably so!

It was a LONG morning, with Tyson not able to eat since 6pm on Sunday evening, and nothing to drink since 6am Monday morning. He wasn't allowed even a small sip to wet his lips. Overall he managed well because we were able to distract him quite well, until about 10:30am. We took along his hockey gloves and stick so he passed a lot of time playing a fair bit of hockey in the hallways, charming the desk clerk and all the other parents in the cath lab waiting for their children, and watching tv.

Once he finally got called in for his MRI at 11:15, he was past the point of hungry, thirsty and grumpy and it all went downhill from there. If you know Tyson, you know what I mean! Brian was amazing with him, and I am so glad he was there. His lap is much bigger than mine these days, and his back much stronger! I'm usually the one who goes with Tyson into the anesthesia room but since I'm pregnant, I was not allowed this time. Brian said Tyson fought the mask for quite some time, kicking and screaming that he wanted to go home, but once he got a few deep breaths of the gas, he was limp and asleep. From there, Brian had to leave his son in the hands of the doctors and nurses and the long wait began.

The MRI and cath both took exceptionally long. During the MRI, Tyson participated in a study to see if doctors can in the future predict which Fontan patients will experience protein losing enteropathy (PLE - a common side effect of the Fontan surgery, involving bowel and kidney issues/ complications.)
The cath also took extremely long because they not only went into the vein in his groin, but also the artery. I didn't ask why, but we believe this was to obtain different measurements and pressures by accessing different areas of the heart. They also performed the fenestration closure test occlusion not just once, but twice, to make sure they were 100% sure how Tyson's heart and lungs would react. The test occlusion caused his pressures to elevate and there was also a decline in his cardiac output, so they decided not to permanently close the fenestration. Because Tyson suffers from pulmonary vein stenosis, a lot of the blood that should be going through his pulmonary veins is instead escaping through his fenestration hole (which is useful in relieving some pressure) and once the hole is blocked it causes even more pressure through his veins - picture the extra pressure in a garden hose once you kink the house for a long time. This means Tyson will remain on his coumadin for much longer term than anticipated. Most kids can come off the blood thinner within 6 - 12 months of the Fontan surgery upon successful fenestration closure, but Ty will have to stay on them for much longer. I truly dislike having my toddler on blood thinners; it adds so much more stress to our lives whenever he falls...but we choose to accept this as God's will too.

At about 4:00pm we talked to Tyson's staff cardiologist Dr McCrindle who had heard nothing yet about how things were going. He went in to talk to the cardiologist in the cath lab, and then came out to report to us that they were just beginning the test occlusion. They tested it for a good long time because there were still no answers yet by 5:00pm. It was a VERY long wait! Usually cath procedures aren't that long...but this time the wait was pretty excruciating. Not knowing exactly what kind of results we should pray for, we kept praying that God would give the cardiologists clear answers as to what was best for Tyson. As much as we wanted Tyson to have the closure so that he can be off the blood thinners and we can put the "Fontan chapter" of his life behind us and begin moving forward, we were also scared that his heart and lungs would not be able to handle it and it would cause problems for him down the road. We know that God's will was done.

So now we wait for the surgical team meeting for them to discuss what is next. They meet every Monday at 3pm. If there is room to discuss Tyson at next Monday's meeting, they will. If not, it might wait till the following Monday. Either way, we are confident that the cath and MRI both have provided adequate information for the team to decide exactly what to do. Considering how long both of these procedures took, we know they have all the information they need to move forward with a plan for Tyson. We believe they will need to give Tyson a large time slot during their team meeting, since they have had extensive conversations about Tyson's condition in the past and this will be a big, life-altering decision to make.

Overall, Tyson did extremely well under the circumstances. His strength continues to amaze us! When we walked into recovery to see him at about 6:00pm, the first thing he said was "Owie. My tummy hurts." Then he cried for his Mommy. I walked over to his bedside and leaned over to kiss him and told him I am so proud of him and he is such a brave, brave boy. He looked up at me, then his eyes began to close again and he said to me softly, "Mommy. Please hold my hand." Sweet, sweet, sweetness. Oh, I just love that kid! Even under those circumstances, he remained tender and lovable. He did a fair amount of vomiting at first in reaction to the anesthetic, and he did spike a fever (which is normal) so the nurse gave him Gravol intravenously and some Tylenol for pain and he did well after that. He laid quietly for a few hours watching Franklin and the hockey game, dozing off here and there. By the time we got onto 4D at about 9:00pm his goofy personality had come back, he told us some knock-knock jokes, and he continuously gave us the "thumbs-up" and winked whenever we looked at him. He mowed down a snack bucket of Cheerios, had 4 freezies and some crackers. Once his stomach had settled he must have realized how hungry he was!


All back to"normal" and ready
to go home! The spider man hat
is his gift from us for being so brave.


This morning he was up by 6:45 burning up with a fever. We gave him some Tylenol and his nebulizer mask (lots of coughing after being intubated and laying flat on his back for so long), let him watch tv while we tried to catch a few more zzz's, and he feel asleep again by 9amish.
He has to take it pretty easy today and tomorrow but in the next few days he will be back to his normal active self.

We are so relieved to have this cath behind us now, that Tyson pulled through again with flying colours, and that we can now move on to the next stage of our lives: a new baby. The last few days I've been paranoid that I'd begin labour before Tyson's cath but thankfully baby is not ready yet and has stayed put. (Ever thought you'd hear a pregnant woman say that?!?) In a few days though, when Tyson is completely recovered, my tune will change and I will be twiddling my thumbs waiting for baby!

That's all for now. I will update again once we hear something from Dr McCrindle about the plain for Tyson.
Thanks so much to everyone for your prayers, love and support. They mean so much to us!
Mel:)



5 comments:

Aunt Rita said...

Wow....Thanks so very very much for the blog and keeping us posted in GOOD detail about what Tyson has to go through (AND MOMMY AND DADDY) in his little life.
Our prayers are continually for him and you all.
LOTS of luv, n kisses, Aunt Rita and Uncle Jerry

Aukema Family said...

Prayed all day yesterday ~ looked over and thought of you all often:) David commented a few times about how much this little boy has been through, we all decided HE IS A WARRIOR for sure. What a trooper. Thanking God for giving you the strength you needed yesterday. Prayers go up ~ blessings come down :)

Janna Douma said...

We understand a lot more of what you are talking about having gone through some of it but cannot imagine having to watch your child go through all of this. We pray that you and Brian recieve the strength each day to trust in God's plan. Also hugs and kisses for your other children. Must be hard for them too.
Uncle Bart & Aunt Janna

Jen said...

Thanks again for the Ty-update Melissa! As I'm reading about Ty's cath day and then got to the end, I breathed a sigh of relief. Woo! What a trooper he is!
Thinking of you guys...
Jen S.

Jenna said...

Hi Tyson
My name is Jenna and I came across your site. U r and amazing, courageous, strong and determined fighter. U are a brave warrior, smilen champ and an inspiration. U are a super hero, a super trooper and a tough cookie. I was born with a rare life threatening disease. http://www.miraclechamp.webs.com