Thursday, June 30, 2016

Yet Another Cardiology Post

Our last visit to the cardiomyopathy team seemed pretty normal. I took Buddy alone because Ryan couldn't take the time off work.  A regular visit is:

Check in and wait
Go to the echo waiting room
Echo (usually Clifford or Arthur on the TV)
Back in the waiting room
Wait for doctor
Meet with nurse and then doctor

Usually three hours. I try not to complain because we have this amazing hospital 15 minutes from our house.

This past time (about two weeks ago) the doctor said that his heart is still not quite normal, particularly something called left ventricular non-compaction. In addition, both of his aortas (aortae?) are enlarged. His heart looks a little heart-shaped.

The doctor remains concerned about what it might do and this time I got more of a feeling that there might be a concern that it actually might rather than just being cautious if that makes any sense.

Up until now Buddy has been able to run and play, running up to three hours a day in Houston summers (under a giant tree). This visit we got a form to give to his kindergarten in August saying that the doctor doesn't want him to do PE. The nurse was talking about 504s and I was just choking back tears. I couldn't think straight enough to ask more questions: could he still play at school, do soccer, swim...??? I just took him down to the ground floor of the hospital to see the enormous collection of toy trains.

Ryan flipped out. He wanted to know more. What could Buddy do? What would he do during PE time? Ryan called and talked the doctor the next day, He got clarification and the doctor said it's okay to play and do his low-pressure soccer class. He's most concerned with long periods of running and not being able to self-regulate. Buddy's also allowed to have water if he needs it. And once he gets to the team sports stage they'll do a stress test.

Then there was lots of drama about getting his new dosage for his medication (beta blocker). Two weeks. I don't want to get into it other than the 9 million calls Ryan and I both made and then the in person visits I made to Walgreen's. Buddy's introverted parents will do anything for him.  And now he has it.

Next up is school and dealing with the 504 paperwork and then homework and everything awesome about that. Honestly. Next cardio appt. is in October with the fun Holter monitor.

I am thankful that we're so close to good care.
I am thankful that my boy can run and jump and play.
I will not fear the future.

In the meantime, he is struggling with the summer before kindergarten. He's ready to start. He's thrown in with the big kids, but he doesn't really want to be with the littles. His adorable north-African French-speaking teacher is helping. He's having some issues I won't share, but this is hard. He's going to LOVE kindergarten, but I think we're all ready for it to just start already.

He's now 4'1" and 54 pounds.
I can still pick him up.
The boy who had to switch swimming classes because he was afraid of jumping off a tower jumped off a diving board for the first time today. Twice.

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