Update from post hospital holter

Just got call from Jay (dr Campbell) our percent went from 44% to 50% the runs r shorter in duration and not as fast but more of them ...we r still ok to travel for Thanksgiving we will increase current meds upon return home and discuss what next early part of Dec ...

Heading home today ...

So far so good ... Ava has been quite busy wrapping up her work here. The nurses has included her in a large part of daily work and even a new admission, Ava was quite pleased with herself.

We are napping (ie Ava is napping) and as soon as she wakes, takes 3 p.m meds, Chris and girls will be here at 330 and off to AWANA we go.

Awesome .....
Fingers crossed we can get to atleast next summer on this regimen ... 35 kg would be nice too, but I think that is pressing our blessings a bit.

Day 3

Ava and I had a good night - Ava was in and out if her vtach but with a low rate so she seems to be adjusting fine. It is early to know if the new medicine is working but we are adding a second medicine (which she has been in before) and after 1p.m labs tomorrow we get to home and possibly make it in time for AWANA ...Ava super excited about that :-)

The feeling is quite strong by all that Ava is far to small for any invasive intervention, and essentially doing well - so we wait !!!! We wait and watch and monitor closely ...the only push to move ahead (Boston or Duke) would be if absolutely life saving necessary.

Back to life as we know on the outside soon ... YIPPEEE

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

Back in "her room"

Settling in to her room "the purwple woom" ---New plan : going to the cath lab at 9 a.m for some medicine trials and if this works we can go home on new meds if not we come back to our room and back to original plan.

Dr Kanter and Dr Wechsler were just here to explain theory and hopes for new plan to be effective.

Ava is resting and seems quite ok with her Ativan on board and all her babies in bed w her :-) all is right in the world!!!

I will post as soon as we know what the word is ....

Time to go to the indoor playground AKA Duke Univ Hospital

We are all packed and ready to head into what Ava calls "the indoor playground" --- new meds start this afternoon and we will keep everyone posted on how Ava is doing. The main prayer request is for the new medicine to work well and not "react" with the amiodarone. Even though we stopped the amiodarone last week it stays around in her system a long time, which can be quite dangerous but this is why we are going into the hospital. Ava will be on monitors and with IV access in the event anything happens the team is ready to treat and she will be fine.

Ava,Claire and Olivia had a great night last night watching The Chimpanzee and snuggling close. The girls had a nice breakfast today and acted like nothing was happening, which is exactly what we had hoped for.

Still no "official" updates from Boston or Vanderbilt. Waiting ......

XOXO

Another admission

Ok .. so i have decided that FB is toxic for me and I am going to retry this whole BLOG thing. I also thought this way if people want to be updated then they can easily log onto this and check up on what is going on with Ava and all of us ..I also can just update once and not worry who i forgot : )

We are coming in tomorrow for new meds here at Duke. The team is aware of our seeking outside opinions and we have their blessing to move forward with Boston or Vanderbilt..we are leaning toward Boston. At this time we are likely going to be leaving Olivia and Claire in Durham. I will post a schedule and send sepcific people emails for what we will need as far as help while we are away, still dont know when we will leave or how long we will be away. I have my list of those whom have offered and my mom will be the primary caregiver while we are away but will need a little help in terms of school pick up and maybe 3 hours on a Fri of help...we will see as the dates are determined next week.

Thus far we are so blessed with the care, knowledge and amazing support of our friends and family.

Let me know if you have trouble with this blog and i will see what i can do to help..i am new to this for sure ..

Lisa