Reassuring News!

I got a very reassuring phone call today from Lauren, Ty's cardiac nurse. (side note: she used to work on 4D when he was a baby. She was awesome back then and she's even more awesome now as his cardiac clinic Nurse Practitioner.) Lauren reviewed all the details of his heart and liver MRI and said that his heart function is similar to his last MRI in 2021, with no major changes or new concerns. His liver did show some increase in stiffness, but she assured me that it's still an ok range for a Fontan. This is the news we wanted to hear because given the way things were worded on his MRI report, it looked like he was heading into Fontan failure or liver failure. 

MRI report said that Tyson's liver stiffness was in the upper limits of normal at 6.2 kPA, with most adult Fontans ranging from 4.3 - 5.5 kPA, with liver stiffness >4.5 kPA in one study correlating to Fontan failure. So you can see how we would look at his number of 6.2 kPA and start to worry a little! We got the MRI results in his MyChart medical app and although the numbers were immediately concerning, we decided we'd just wait for a call from the cardiologist before we started to worry. BUT then he got sick and then he presented with (still unexplained) blood in his vomit. So I was a bit of a mess for the past few days since his incident, worried he was in Fontan failure or liver failure. We know that many Fontan livers can eventually fail because The Fontan circulation creates a lot of congestion in the liver.  When that happens, they talk about heart transplant because if they give a new liver, congestion will just build up again eventually due to the Fontan blood flow.

Lauren said that the majority of the Fontans she sees have numbers in the 6's but that can also change from year to year depending on what's going on in their life at that time. However, out of an abundance of caution, she wants a liver ultrasound done. Because his spleen was also enlarged and his platelets are low (they have actually been low for several years) but it could have also been early signs of infection. So just to be sure she wants him to have a liver ultrasound when we go for clinic in October to see if they need to refer to hematology (liver) clinic for advice.

Tyson will also be going for a cardiac catheterization (angiogram/heart cath) before leaving SickKids as part of their new proactive care plan for all Fontans graduating SickKids. They just decided on this new plan within the last 6 weeks and Tyson will be one of the first patients to have a cath as part of this new plan. The reason they're now implementing this is because they're finding that 50% of patients need a cath shortly after being transferred to Toronto General anyway. And as adults, it is done with no general anesthetic (they're completely awake.) So they want to help guide SickKids patients through their very first awake cath with teaching and explanation from a child life specialist so that they're not nervous and understand what's happening for down the road when they need a cath at an adult hospital.  They'll still use numbing creams or calming meds if needed but he will be awake for the whole procedure. They can also dilate vessels or identify any problems and fix them prior to transitioning to adult care. 

So all in all, Tyson is still within the normal limits they'd expect to see in a Fontan and there's no need to worry that what happened this past weekend is a result of a worsening heart or liver condition. Lauren thinks it's more related to whatever is happening in his lungs and that maybe he burst a vessel while he was puking. He'll be going for a chest CT and pulmonary function test at SickKids so the respirology team will try get to the bottom of it. 

I noticed in MyChart that he's already booked for his chest CT scan and his liver ultrasound in October when we go for his other cardiac tests. Sometimes we complain about our healthcare system...but we can also attest to the fact that things can also happen quite quickly when they need to. 

Brian and I are both very reassured with this news and are feeling a lot less nervous about Tyson having a reoccurrence of this past weekend. It feels like I can breathe again, I think I was holding my breath the whole time waited for that phone call! 

One other quick thing to note is that Tyson is also being referred to the orthopedics department because it's recently been discovered that he has pretty significant scoliosis, a curvature in his spine. His curve is angles 24 degrees to the right and then 22 degrees back to the left. He's been seeing a chiropractor for about a year, as soon as we noticed him walking crooked, and he is pretty sure it's a result of having his sternum dissected three times and fused back together with sternal wires. It likely wasn't noticeable until he started growing. We saw our family doctor today for follow-up appointment and he put in the referral for Tyson to see the orthopedics team at SickKids. Even though Ty is technically graduating from SickKids in just over a year, his family doc feels more comfortable having him go see the pediatric experts first, before sending him to an adult orthopedic team. It just means more appointments in his final year at SickKids, but that's ok.

One final note, if you want to receive notifications when this blog is updated, you can click the 'follow' button. I try to keep everyone up to date as much as possible and this blog really helps with that! Thanks again for following along on Ty's journey.