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