A Year of Good Health and Some Very Memorable Events

Happy New Year and welcome to 2023! We are excited to be celebrating another year surgery free and hospital free for Tyson.  If you remember from my update last year,  Tyson was being considered for open heart surgery at this time last year, so last year we rang in 2022 just a *little* bit stressed. This year however, we are rejoicing over another year of good health and no talk of surgery right now.

Tyson graduated elementary school in June and was able to attend an overnight trip to Fair Glen with his Grade 8 class. He had a ton of fun, came back sick and very very tired, but thankfully we were able to get him caught back up on sleep and nurse him back to good enough health so that he could make it to his brother's wedding that same weekend. 

Braden's wedding was an enjoyable day and Tyson even had a place of honour in his wedding party. He started the day feeling quite well, but unfortunately a stomach bug went around the bridal party and Tyson got hit with it in during the ceremony, so he was feeling rather unwell for the rest of the day. He managed to work his way through the day, and was exhausted by the end. You can tell from the pictures when he was feeling well and when he wasn't. 

Tyson's boutineer being pinned on by the only person in the church who knew how to do it, my Mom

Tyson walked the flower girl and ring bearers down the aisle.

Three brothers - Merrick (best man), Braden (groom), and Tyson (page)

The whole family

As if that wasn't enough excitement for one summer, Tyson graduated from Grade 8 the next week. We are so thankful that God has blessed him with good health to be able to attend and do well throughout his years in elementary school.  His first few years started off a little rough with lots of absences and even some hospital stays as well, but overall his health has been good. 

Grad day!

He got a Guerrero jersey from us as a grad gift

Tyson and his cousin Mikayla were baptized on the same day back in 2008 

and now they've graduated Gr 8 on the same day as well. 

Blessings from the Lord!

Mikayla and Tyson with their grandparents

Tyson started high school in September and so far he is LOVING it! He's settled into a good routine and has found a really great group of friends. In November he was able to have them all over for the weekend and then they hung out on New Year's Eve as well. 

In November our family was hit with a bad respiratory bug that took some of the kids down quite hard.  By the time the cold had completely gone through the house, our family had been sick for over 4 weeks, one after the other. We're thankful for natural tools in our family's toolbox that we were able to overcome it without the need to see a doctor, even Tyson. 

Tyson had his annual appointments at SickKids in November as well.  Because he's doing so well and carries on with much of his life as a normal 14 year old would, sometimes we forget the severity of what is actually happening on the inside of his body.  Reading the reports from his cardiologist on his heart and liver is a stark reminder of everything he's endured in the past and how unique and fragile his heart really is. His blood is still shunting through his fenestration the opposite way as it should, and his pulmonary veins have been a concern this whole time, but by the grace of God, this has been working for him for the past 12 years since his Fontan surgery. 

The regurgitation happening in his mitral valve is mild to moderate, and "may need repair some day." The narrowing in his pulmonary veins is more severe than before and "may need repair some day." 

His aorta is enlarged and compressing the LPA and trachea and "may need repair some day." 

Through it all, Tyson carries on because God is holding on. He continues to take the long bus ride back and forth to school every day, and he carries on because God is holding on. He continues to be active in sports and other day to day activities, because God is holding on. We serve a faithful God!

Tyson also had an abdominal ultrasound to monitor a few of his other organs because with the Fontan blood circulation, it puts extra pressure on other areas of his body, particularly the liver. His liver and spleen are enlarged because of this pressure, and he is experiencing mild cirrhosis of the liver, but it is still within the normal Fontan limits. We are thankful that he's followed by a specific Fontan clinic because they know what they're looking for in the heart and the liver. He also still has the cyst on his kidney which is stable.

Tyson's new cardiologist Dr Anne Dipchand is wonderful and explains everything just as well as Dr Emilie Jean-St-Michelle did. The older Tyson gets, the more the doctors talk to him instead of me, because soon he'll be getting ready to transition to adult care at another hospital. 

Pretty soon they're going to need longer beds in the ECHO department

Tyson is growing taller than Stephanie, 

the cardiac nurse that's been with him for 14 years

After his appointments, Tyson had to wear a holter monitor and blood pressure monitor for 24 hours. I didn't take any pictures this year because Tyson was absolutely miserable and would have been so mad at me if I tried. I felt so bad sending him to school the next day but it's pretty imperative that he engages in as many normal activities as possible to get an accurate reading, even if it's uncomfortable. I can't believe he was even able to walk, let alone participate in Phys Ed, etc. The holter has 5 leads attached to various parts of his chest, each with a wire that connects to a small monitor that he has to try and stash in his pants pocket.  One of the worst parts for him is the adhesive they use to stick the 5 leads to his chest, but this year they coated his skin with something to protect it first, and that really helped prevent the itching. 

And the blood pressure cuff was exactly what they use to take his blood pressure in the hospital, a large cuff with 2 long tubes (LONG tubes!) that he had to wrap around behind his head so they didn't drag under him while he walked, and those tubes were attached to another monitor which he had to try to stash in his other pants pocket. He was so so uncomfortable. I'm surprised that with all the modern day technology available to us that they're not able to do this wirelessly by now! He was SO worked up about how he was going to hide all those tubes and wires from his classmates, and he was literally walking around like a robot. Poor guy cried so bad and begged me to give him the day off school. He's in a new school now where not everyone knows about his heart condition and he really doesn't like to stand out in the crowd.  Unfortunately, because they need an accurate reading of his heart during physical activity, we couldn't let him stay home because sitting around moping all day wasn't going to give a good reading. We finally convinced him to just be honest with his friends about his heart and why he was wearing the monitors, rather than trying to hide it from them. 

So he went off to school in tears, he was so angry and annoyed. There are times having health concerns takes its toll on him emotionally. But thankfully he was able to take the blood pressure cuff off at 1:30 that afternoon. I then drove to his school so that at 3:30 I could take off the holter so he could enjoy basketball practice wire free. Lesson learned: when the cardiologist gives you a choice between doing the holter and blood pressure at the same time or alternating between the two each year...choose to alternate and do them one at a time!  Lesson learned for next year. 

Tyson celebrated his 14th birthday in November. He had some friends spend the night after school one weekend, and we were able to celebrate with a gourmetten meal with family.

We feel so blessed that Tyson is doing so well despite all that's happening with his heart. We never take his health for granted and we know he truly is a walking miracle and a testimony to a good and faithful God. He's doing so well right now that we thought, hey let's ask his cardiologist if he'd ever be allowed to fly to a Caribbean island somewhere for a family vacation. And guess what?! His cardiologist said YES, his heart is stable right now so we should definitely go now!  So we jumped at the opportunity and booked a trip to an all-inclusive resort in Cayo Coco, Cuba for a week in March! We never thought we'd ever get to do this as a family because many years ago we were told that we could only drive to Florida or somewhere where they have a good cardiac center nearby.  So to be told that yes, his heart is stable enough to fly and visit a Caribbean island is amazing and we are SO EXCITED to get to spend some time soaking up the sun. 

That's the update for now, thanks for checking in!

Till next time,

Melissa