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!

Please pray

Asking for prayers for Tyson again please.

As you know, Tyson often coughs all winter long, and well into spring.  We usually don't panic until it turns into that wet, junky sounding cough.  His last bout of pneumonia was end of April and took 2 weeks of antibiotics to heal him.  He literally enjoyed one week without coughing and feeling really great (so we snuck in a family getaway to Great Wolf Lodge!  Woot woot!)) and a few days later he started coughing again.  We started him back on ventolin masks again last week Wednesday and he's been on 4-5 ventolin masks per day since last week Friday.  Saturations at home are still 84-90. 

We were trying not to be too terribly concerned about this new cough, but this morning I took my oldest son to our family Dr to get his knee checked out, and I thought 'Hey, while we're here, I should get Dr Cormier to listen to Tyson's lungs...." 

Uh-oh...sats of 79-83 and down to mid 70s when he tried to cough it out...the Dr was extremely concerned and said he won't sleep tonight if he doesn't get Tyson x-rayed.  So he sent us to emerg for x-rays to make sure he doesn't have pneumonia.  We at least killed two birds with one stone and had Braden's knee x-rayed at the same time.  Had a quick McDonald's drive-thru lunch, a quick trip to the Dollar store for some last-minute costume searches (more about that below....) then I brought Braden back to school and went home with Ty and Addi.  Tried not to worry, sorted through some laundry, called Sick Kids to sort out Tyson's coumadin dosing for this weekend.  Since his last pneumonia we've been struggling to get his INR level back on track, it's been up and down like a yo-yo for the past three weeks.  Yesterday his level was 3.7 so I needed advice on what doses he needs and when to check it next.  That was a 35 minute phone call because his regular thrombosis Dr wasn't in so I had to relay his past three weeks levels/doses to the thrombosis Dr on call.

Phone rings again.  It's Dr Cormier.  Tyson's x-ray showed pneumonia and the Dr isn't sure if oral antibiotics are going to be enough to clear it up this time, since it is more profound than his last pneumonia-filled x-ray they have on file from April.  So he wants to discuss it with the pediatrician Dr Murphy to decide what to do and call me back.

Dr Murphy wants to meet Tyson in ER in an hour.  So I whip over to the school to grab my kids, whip home, pack an overnight bag, try to calm my children down who see me packing an overnight bag (a practise I always do when taking Ty to emerg for x-rays.....) cancel our girls night out plans to take Kenya to a Glama Girls Party in Newmarket (manis & pedis & pizza & cupcakes compliments of Glama Gals & Starlight Foundation)  wipe a few tears from Kenni's face and promise to make it up to her sometime by taking her out for a Mother-Daughter pedicure, grab a few snacks, and Tyson and I head to the hospital.

In ER where we have to register to meet Dr Murphy, Tyson's sats are 88 and he is acting perfectly normal.  I am thinking he is DEFINITELY not sick enough to be admitted to the hospital, so Dr Murphy and I discuss which route we should go and the conclusion is that Tyson will once again be put on oral antibiotics with instructions to rest....and if he gets even a *little* bit worse in the next hours or days until his meds are totally done, or if he gets a fever, or if he stops eating or takes a slight turn downhill....we have to pack our bags and stay at Headwaters for IV antibiotics to clear the pneumonia for good.  (FYI the pneumonia was in his left lower lobe this time, last time it was the right lower lobe.)  Dr Murphy said Tyson can attend his track and field day tomorrow only if he's feeling energetic but absolutely no running events.

Tyson was absolutely wiped by the end of the day so we're praying he has a good night's sleep and wakes up energetic and ready to carry on through life hospital-free.  

Please, please, please pray that we can avoid the hospital!  We have narrowly squeaked by about four times in the past year.... please pray Tyson remains well and can stay at home.

Our family is participating in the SuperHeroes Bowl for Cardiac Kids this coming Saturday!  Click on the link to sponsor us if you haven't already :)

I have worked very hard on our costumes, we are all members from Teenage Mutant Ninja Turtles.  Tyson has raised almost $800 for Cardiac Kids and we are SO EXCITED to participate in this event.  It would really be a big disappointment if Tyson can't enjoy this event with us!

Please pray.


1 comment:

Anonymous said...

praying he woke up this morning in good spirits!! have fun on your cardiac kids event -while we do the anchor walkathon!