Day 2

Started out sort of rocky, but got IV flushed and made a trip to the cath lab to try medicine #8 which didn't work. Came back and took several walks, had some yummy lunch (thanks Dr Caroline) and even a secret brownie ... Took first dose of medicine #9 which tasted yummy (chocolate she says) and it is a tiny amount. The amiodarone was 14 ml and this is .7 ml so back to every 8 hours for meds again blah. Now, after consult with Boston came back today they are all saying the same thing. Our goal has to be to get Ava closer to 35 kg before taking her for any ablation unless she declares (like she often will) that is just not going to be safe to wait.

Our primary doc and the specialists here have said everything verbatim to what dr Walsh from Boston has now said except his team has done 10-15 of these in small children.

We might proceed with a catheter here and define the location more clearly and IF the focus is right heart. ABLATION right then which would be more safe and workable even with her being so small. If at that time it is clearly left heart defined we back out continue drugs and ablate when she is 35 kg or much bigger.

Ava is beyond tired ... We will have some labs tomorrow after dose # 3 then home Sunday - maybe stay and do cath/mapping on Tues. that is not clear yet :-(

Thank you all for checking in on us and all the love and support -
Love, Lisa