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!

Silly Antics Means He's Feeling Better And Ready to Go Home!
Ty slept super well last night and didn't need any O2 at all.  His O2 sats stayed 83ish or slightly higher all night.  Sats monitor was allowed to come off today to free up a finger, with 'spot checks' every 4 hours to make sure he's maintaining good saturations.  The Dr saw him this morning and said he doesn't sound a whole lot better yet so we'd better stay a little longer.  That's ok, Tyson is having an ok time.  His IV line is only connected for the duration of his med infusion.  Because he's eating and drinking well, he doesn't need IV fluids so he doesn't stay connected.  It sure is nice for him to have free hands to move around and the ability to take an occasional short walk around the hospital.

I called our medical/travel insurance company today to inquire about how Tyson's hospital stay would affect his coverage for our upcoming trip to Florida next week.  The representative told me that Tyson would still be covered for all his pre-existing health conditions that are stable and controlled - including his heart condition - with the exception of pneumonia.  So if he catches pneumonia while we're down in Florida, we won't be covered, but if anything else happens, we still have coverage!  WE ARE SO EXCITED TO HEAR THIS!  IT MEANS WE ARE STILL GOING TO FLORIDA!!!  :D Once Tyson gets home from the hospital, he will remain on oral abx for a few days and based on past experiences, he will be the healthiest he's ever been in a long time by the time we're ready to leave!  So we shouldn't need to worry about pneumonia....and I'm pretty sure that warm Florida sunshine will do him a world of good!   (And boy am I ever looking for a nice holiday after the past week I've had.)

A Visit From Banner Reporter Alex - She Brought Captain American!
Today we were supposed to meet with a reporter from the Orangeville Banner.  Since we couldn't meet at our house as planned, Alex decided to come visit us at the hospital!  And Tyson loved her because she brought him a Captain America action figure, which he hasn't put down since he got it! 
Last night Tyson's Aunt Joni came to visit and she brought him a Ninja Turtle colouring book and a brand new pack of markers.  Today when I told him that Grandma was coming for a visit, Tyson asked me, "Is she bringing me a present too?"  LOL  Spoiled much?  Grandma did bring lunch and his sister Addisyn....whom he loved teasing and the feelings were mutual.  *sigh* those two....

They Love to Hate Each Other

Hey Look!  They Aren't Fighting In This Picture!
This afternoon I ran into another friend in the hospital.  She and I are both Heart Moms from small-town Shelburne, and we met on a Cardiac Sick Kids support group on Facebook.  Once we discovered we both lived in Shelburne, ON we instantly became FB friends and started chatting, with intentions to eventually meet up together.  So far I have bumped into her twice - and BOTH times were in the hospital!  The first time was in the halls of Sick Kids while we were visiting one of Tyson's heart friends earlier in January, and then today we bumped into each other at Headwaters.  We have to stop meeting at the hospital and try to get together for tea sometime, once everyone is healthy again!

Hopefully tomorrow we will get to go home?!  I am trying not to get my hopes up, because we really truly never know....but Tyson is going to start doing cartwheels out of his bed soon if we're not careful ;)

Another Visit to Headwaters

Tyson caught a bad head cold last weekend which developed into every symptom you can name under the sun.  Headache, sore throat, stuffy nose, cough, sore tummy, fever, fatigue, etc.  At first we thought it was just viral so we kept him home and tried to manage it with essential oils and lots of rest. 

We kept him home from school at the first sight of the infection to keep on top of it instead of trying to play catch-up like last time.  We oiled.  We flu bombed.  We used chest rub and veggie caps regularly.  We did ventolin masks and chest physio and deep breathing.
On Saturday, we realized the veggie caps were upsetting his tummy and he wasn't keeping food down.  His sats took a nose-dive, his INR sky-rocketed, and we *needed* to get something into him that would stay into him so we started him on the oral antibiotics hiding away in our kitchen cupboard, tucked him into bed, and prayed for better health in the morning.   As always, a good night's sleep can go a long way.  We continued to flu bomb and use chest rub and do everything we possibly could to keep him out of the hospital.

Sunday morning we saw some improvement and his sats were stable so we continued to try keep him at home. Monday, even more improvement and even a smile or two!  Tuesday, he was almost back to his normal self again, but still lots and lots of coughing and the O2 sats lagged behind, especially at nights.  We figured the oral antibiotics just needed more time and Tyson needed more rest (tv watching and Xbox playing) and he'd eventually get better. Even walking up a flight of stairs caused a lot of huffing and puffing, so we just kept him quiet and tried not to overwork him, just trying so hard to  avoid another hospital stay. 

Watching his Dad and siblings playing hockey on the outdoor rink is not nearly as fun as being out there himself!
I brought him in to the family doctor today because although his mood had improved and he is being his normal goofy self, the cough was still very junky-sounding and his saturations had been hovering at 80-81 for three days straight, even lower from time to time when he was too active, and especially lower overnight.  His sats have been too low for too long and there should have been more improvement by now.

O2 saturations at the doctor were 78-79 (on both his sats monitor and mine) and the doctor didn't like how his chest sounded...so he sent us off to emerg for chest xrays.

ER Dr ordered chest xrays and surprise, surprise, Tyson has pneumonia again.  Six days on oral antibiotics at home, and all the essential oils we've used did nothing but keep him from getting worse.  They allowed him to plateau but didn't kill the pneumonia.  His bloodwork was ok, INR ok again, but the ER Dr was not comfortable sending us home with just another dose of oral antibiotics.

In light of the fact that we are supposed to be leaving for our Florida vacation, I begged the Dr to just give him a bolus of IV meds, send us home, then we could come back again tonight and then again in the morning.  He did discuss it with the pediatrician but they both agreed that they rarely send a healthy child home on IV antibiotics, let alone a child with a severe heart condition.  *I tried...*


Hospital PJs are so cute!

So we are here until his sats improve and his chest sounds a lot better.  The pediatrician (Dr Oyefeso) doesn't think we'll be here for too long but didn't want to take any chances with his heart.  Having low sats like that for too long can have serious impact on his heart.  I get it.  But I just wish he could have pulled through at home.  It was not for lack of trying.

So are we still going to Florida next week?  We'll likely make it home in time....and Tyson will likely be the healthiest he's ever been in his life by the time we have to leave....
But our health insurance policy states that those with a pre-existing condition must be hospital-free for 90 days prior to departure day.  Once Tyson is well again and we are home, I will contact the insurance company to see if they will still cover Tyson because he was admitted for something unrelated to his heart condition.  Perhaps asking for a note from the pediatrician confirming this.  But who knows what they will say.  For now, we take one step at a time.  Get Tyson better and kick that pneumonia OUT!
Pneumonia, be gone!

The nurse on shift tonight just came in to give Tyson his ventolin mask and after he complied and hardly even acknowledged that she was there, she turned to me and said, "No child should ever have to be that comfortable with medical procedures."