Tuesday, February 12, 2013

A Change of Plans

Mia had a cardiology appointment today, she's such a good little patient.  When someone comes at her with a stethoscope she grabs her shirt and lifts it up for them, little cutie :) 

The last time we saw him she had just had an episode of SVT and he put her back on the heart med and explained that she would most likely be on the drug until elementary school. Today he changed his tune a bit which surprised me.  She's only had 1 SVT episode in over a year, he doesn't think this warrants her being on the medication long term as long as we are able to get her out of an episode without medical intervention.  He said even 2 or 3 a year is ok.  So this June we are going to stop Digoxin and see what happens.  Am I nervous??  YES.  But in 6 months her communication will be better and hopefully she will be able to tell us when she's in SVT.

Her last episode I was able to tell right away that something was wrong, but as she's getting older she's spending a little more time away from Mama.  I even left her with a babysitter last week while she was home sick for the first time, that's a huge step for me.  So what if something happens when I'm not around?  What if whoever she is with doesn't notice?  Kids can tolerate an accelerated heart rate much better than adults, an adults heart would give out well before a child's.  It still doesn't make me feel any better, the fact that this last episode came out of nowhere makes me even more nervous.

In her (almost) 2 years on this earth she's never been without a daily medication except for the first 6 weeks of her life.  We were just weaning from the last heart med when she got sick with SoJIA and we had to started an entire new set of meds.  I can't even imagine not packing a med bag on trips, not double and triple checking that they are in the bag before we leave, and then checking them again once we get to our destination. 

Dr. Ralph seems confident though that even if we do have a problem I will be able to handle it.  It's nice to know that her Dr's have as much faith in me as her caretaker as I do in them to being my guide to making the right decision for my Mia.


Cereal and Saturday morning cartoons, I officially have toddlers :)

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