Wednesday, April 29th

Tyson had his appointments today at SickKids. He had an echo, ecg, holter monitor and a meeting with his new cardiologist Dr. Emilie St-Jean-Michele.  The good news is that his echo hasn't changed since November which means his heart function hasn't changed, so that's very reassuring. Dr. Emilie says it's possible that the Fontan pressures may have changed and an echo doesn't pick up on heart pressures so she wants to run a few more tests, specifically a stress test and an MRI. The stress test is the best and least intrusive indicator but with COVID, they aren't doing stress tests right now (it's too risky for staff because it involves mouth pieces in patients' mouths and with droplet precautions, they've discontinued stress tests for now.)  She sent Tyson for some blood work because that could also give some indication of his pressures changing.  Depending on the results from today's blood work, the stress test and MRI could be a couple months away.  If she finds something alarming with his bloodwork, the tests will happen sooner than later. 

As you know, the COVID outbreak at SickKids is a concern for us but I have to say that the safety precautions at the hospital were very good.  We felt extremely safe with the extra measures that they're taking to stop the spread of COVID there. Security at the entrance, health screening, new masks given to everyone (even though I had just put a brand new one on!) only 3 people in elevator at a time, everyone was wearing masks, and all Tyson's appointments were done in the same room to minimize movement around the hospital.

Dr. Emilie has also referred Tyson to the Fontan clinic at SickKids which  specializes in post-Fontan care and complications. This clinic offers more expertise because they stay more up to date with Fontan research and they specifically see only single ventricle kids like Tyson.  This is very reassuring as well because we know he will be seen by doctors who know a lot about his particular physiology and there is less chance of something (like liver issues or PLE) slipping through the cracks. Dr Emilie is actually one of the physicians in the Fontan clinic so thankfully it won't involve any extra appointments for Tyson. She specializes in heart function and Fontan dysfunction so she assured us that Tyson is in very good hands with her.  She sounds amazing.  The one thing I noticed is that she gives a lot more information than our other cardiologist did, I found myself having to ask a lot fewer questions today :) 

We are home now. Tyson has to wear the holter monitor for 24 hours.  He has done this test before and it's always a bit of a challenge because he gets SO itchy from the tape and it's uncomfortable to sleep.  I fully expect him in our bedroom in the middle of the night. Thankfully it's only for one night! 

So while we do have some good news today, we have to wait till Tyson gets these other tests to find out if there's more going on.  For now, we rejoice that there doesn't seem to be a decline in the actual function of his heart and we will keep you updated as we hear more. 

An Extra Visit to SickKids

We will be making a trip to SickKids with Tyson next week on April 29^th.  He normally only sees his cardiologist annually and wasn't scheduled to see him until December 2020, but Tyson’s energy has been declining and he has some new, concerning symptoms that require further investigation and cannot wait until December.  He missed more days of school this year than he did last year, not because he was sick but because of nausea and headaches, generally just feeling tired and in his words, “I just feel so crappy.”  We’ve also noticed that normal everyday activities tire him out more easily, and he has more frequent periods of cyanosis with activity (his colour is more blue) his eyes are dark and tired looking and his oxygen levels are dropping slightly. He's also had some unusual issues with his bladder which we ran tests for and had a phone consult with his nephrologist (kidney doctor) but came up with nothing.

I've been procrastinating writing this update for a while because we've always wanted Tyson to be treated as normally as possible and especially don't want him singled out among his peers at school.  It's hard enough for him to have limitations because of his heart, we don't want anyone feeling pity for him and treating him differently. But since he's schooling at home and doesn't see anyone these days anyway, this is as good a time as any to update. 

Normally Tyson sees his cardiologist in the winter and his pediatrician in the spring.  We time it this way on purpose.  When we saw his pediatrician earlier in the month, Dr Murphy also confirmed that Tyson needs to have some more tests run.  He says that given the symptoms we’re describing and the fact that Tyson has been growing well lately (3 kg and 7cm in one year) he wonders if his left pulmonary artery and pulmonary veins which were problematic a few years ago might be not growing quite as quickly as the rest of his body.  The good news is he said his heart sounds the same as it did last year ( so I don't think he is suspecting heart failure at this point - you can usually hear that.) 

I'm guessing we won't have any immediate answers on the 29th because SickKids will likely send him for an MRI to gather clearer images, because Echos don’t give a very clear picture of the pulmonary veins, and he will need to have an MRI of his liver soon anyway because of wear and tear on his liver and something called “Fontan Associated Liver Disease” which he is being watched for.

This upcoming appointment has been weighing extra heavy on our minds, not only the fear of the unknown of what is happening with Tyson's heart, but also in light of  COVID-19.  We have done very well at keeping our family extremely safe and secluded and now we have to go into a hospital!  SickKids has some very tight restrictions in place and only one parent is allowed in the hospital building with Tyson.  Brian is coming with me but he will be waiting in the van (or if the weather is nice he will find a spot and sit in a lawnchair outside?)  Also, we normally move from room to room in the hospital for all his tests, and sit in all the waiting rooms, but they want to minimize movement within the hospital so he will have all his assessments and tests done in the same room.  He will be having an ECG, echo, holter monitor and a meeting with our new cardiologist, Dr. Emilie Jean-St-Michel (who we'll call Dr. Emilie from now on because that is way too hard to type ;) 

Please keep us in your prayers and pray this is nothing too serious,

Brian and Melissa 

Picture just for fun.  This is Brian helping Tyson with his schooling at home. 
Brian has only been home from work one day so far and he thought it was pretty neat to see all the kids working