It doesn't matter how old your cardiac kid gets or how well they're
doing, I think as parents we will *always* be nervous for the cardiology
follow-ups. The 'what ifs' can be haunting. Tyson has been doing really well, seeing cardiology every 6
months, and he has yearly cardiac MRIs to check on his heart function
and monitor the status of his narrow pulmonary veins. His heart
function has been (very slowly) regressing and his pulmonary veins are under
careful scrutiny. Every year when I ask the cardiologist for a copy of
the MRI report, he willingly emails it over. It gives me time to read
the findings, work my way through the emotions that come along with any
changes, and then know which questions to ask when we see him for
follow-up. This year however, when I emailed our cardiologist for the
report, he said he is "reluctant to forward a copy of the MRI and echo
reports until I have reviewed them with you and also examined Tyson."
!?!?!
This happened the third week of April....and I have been on
pins and needles ever since. I haven't had horrible anxiety like I used to years ago when Tyson was much younger because now I have some wonderful essential oils that help me with this, but even still it's not easy waiting and wondering why he would suddenly decide not to send us the reports. The 'what ifs' are sometimes consuming but if there's one thing we've learned in this heart journey we're on, it's to always look at the 'now.' Right now, Tyson is doing great and from a lung-health perspective, he's had his best winter ever! Only on antibiotics ONCE all fall/winter/spring! That is amazing progress!
Still, even though Tyson is doing well and there
haven't been noticeable changes in his activity level, I'm still feeling
nervous. Today is the day we find out if there really is something to be concerned about, or if Tyson's cardiologist was just being "Dr. M."
I will keep you all posted by adding to the bottom of this blog post.
Melissa
So today's news is good and .... well I'm not really sure if the other news is considered 'bad' news. At this point I don't know yet.
The good news is that there is relatively little change in Tyson's heart function. The same concerns with the shunting, kinked SVC, leaky mitral valve, and severe pulmonary vein stenosis are all still there. We didn't really think they'd go away ;)
One thing that was noticed on the MRI in April that may be a concern is that Tyson has a cyst/mass in his right kidney that they want to investigate with
nephrology. The cyst was there when he was a baby, I remember, but
apparently then it was very small and not a concern. At his last MRI a year ago it was 12 mm in size and is now
22 X 22 X 24 mm. So Dr. M wants Tyson to have an ultrasound of his kidneys and then a follow-up with a nephrologist to investigate if intervention is needed.
At this point I have no idea what this means, but when I asked if it was possible that it was a cancerous tumour, Dr. M said it's highly unlikely but that he's not a kidney specialist he's a heart specialist. I do know that 24 mm seems to be a fairly large mass to be on such a small kidney. Tyson will have an ultrasound and appointment with nephrology in the next few weeks and we will update you when we know anything more.
Just add another specialist to the list of departments we visit at Sick Kids, no biggie ;)
Thanks all for your thoughts, prayers, texts and emails throughout the day. We feel your love.
Melissa
