GUESS WHAT CLINIC WE SAID GOOD-BYE TO TODAY?!?!

Did you guess correctly? That's right, the haematology/thrombosis clinic!! We're ecstatic to report that after 11 long years, Tyson is officially OFF of coumadin!!!!!

His cardiologist Dr. Emilie says he can start taking a low dose aspirin instead. This news both excites us immensely and scares the crap out of us at the same time. How can we be sure that he's fine being off the anti-coagulant that he's been on for almost his whole life?  

Well, remember that study Tyson participated in a few years ago? There were 3 drugs being studied at that time - rivaroxaban, apixaban, and aspirin - all comparing their risks and benefits vs. coumadin.  Because of the findings of that research study, SickKids has decided that aspirin is as good as coumadin to prevent stroke in Fontan patients. Health Canada has finally approved the use of rivaroxaban (aka Xarelto) and apixaban (Eliquis) in children, so from now on SickKids will be prescribing one of those to Fontan kids INSTEAD of coumadin! They'll take that for approx a year while the risk of clotting is high, and then transition to low dose aspirin after a time (except in rare cases of history or risk of blood clots/stroke.) Tyson doesn't have those risk factors so Dr. Emilie is confident that he will do great on aspirin. She thinks that soon prescribing coumadin for anyone will be a thing of the past!! This is such good news for Fontan kids!! 

What does this mean for Tyson and for us as a family? It means:  

• No more INR level checks (finger poke and/or blood work)
• No stressing about out-of-wack levels when he’s sick or doesn't eat a consistent diet
• It's not as serious if he misses a dose
• No more spending hundreds of dollars a year on test strips
• No more nosebleeds 🤞
• Better appetite 
• Less risk of heavy bruising
• Less risk of brain hemorrhage (still slight risk but it’s greatly reduced)
• No limit to what plant medicines he can use
• Don’t have to accompany him to every school field trip
• No more bone density scans to monitor for low bone mass (brittle bones)
• No more thrombosis clinic appointments at SickKids!

If you've been following Tyson's story for a while, you'll know how much I hate coumadin. I don't use the word 'hate' very often, if ever. But when it comes to coumadin I truly do hate it. It's the reason for so many decisions we've made over the years; why we had go to every sports game or field trip with him, why we never went skiing until last year, why he wears a helmet and shin pads when skating, etc. 

All of this comes just in time because our CoaguChek machine was on the fritz and was no longer reliable. We crossed our fingers and said a little prayer every time we used it for the past few months because it would randomly turn off in the middle of the test. I was going to ask for a prescription for a new one today but we won't be needing one afterall!

Overall his cardiac tests today looked good. His heart function is unchanged from previous ECHOs and he's gained 5.5 kilos since this time last year - that's 12 pounds! I can only imagine how much my grocery bill will go up now that he's no longer on coumadin. (To that I say, BRING IT!)

Dr. Emilie Jean-St-Michel

Today we said good-bye to Jennifer, our thrombosis clinic nurse of many, many years. She's the one we report every INR level and bounce ideas around about how to get him back on track if we miss a dose. She's more than just a nurse to us, she's like family. 

Good-bye Jennifer, we love you!

Tyson also had a long MRI today (it turned out to be 3 hours long...) He fasted from 8:30am, had tests and clinic appointments all morning, and then the MRI started at 12:30.  He wasn't too thrilled that he had to have an IV for the contrast dye, but was brave nonetheless.  

What does a 13 year old boy do in an MRI machine for three hours? 

Watch Harry Potter, of course!

Going in!

Finally eating at 4:00 pm

Tyson came out of the MRI machine quite stiff and sore, with pressure marks on his behind from laying so still in one spot for so long. He literally wasn't allowed to move an inch, not even to adjust his legs. I'm thankful they have movie goggles to keep him distracted. 

Ok, one final detail and then I'm signing off. We don't have the results of the MRI yet, but as long as things look good, Dr. Emilie is going to present Tyson's results to the cardiac team to see about the possibility of closing his open fenestration. Maybe.... Depending on results... 🤞🙏... We don't want to get our hopes up too high, but this would mean there'd be no need for aspirin because he'd no longer be at higher risk of stroke. AND it would mean his oxygen levels would get closer to 100%. 

All in all, a very long, emotional day.  We left at 5:45 and weren't back till 6:30pm. Tyson and I are both exhausted (my eyes are starting to close...) but all of us are extremely excited for NO MORE COUMADIN!  

Chow for now,

Melissa

PS If you're on Instagram, check the Reel I made with highlights from our day.

https://www.instagram.com/reel/CW9p2coA0Cu/?utm_medium=copy_link