March 2017 update . . .
I held off on this update because Josie and I were scheduled to go up to Stanford /LPCH to let her PH specialist look her over. We did that trip at the end of February.
In preparation we slowly increased the oral medication (the one that replaced her central line as part of the clinical trial). We were able to add almost 20 % more to her daily dose (It wasn't fun, but we got it done). We thought we were seeing good results, but were waiting to see what the Doctor thought.
I am happy to report that everyone at Stanford/LPCH was pretty happy with with what they saw.
Josie has gained a few pounds (good for her), and in her walk test she increased her distance slightly while still being able to keep her Oxygen sats in the mid eighties. Her echo did not show the concerning spikes in internal pressures.
The summary is - overall the oral version of her medication is now doing the job as well, or even slightly better than, the medication through her central line. I am pretty excited - This is what I hoped for, but I couldn't see any reason it should work that way.
We have apparently achieved stable for now.
The oral meds still have their own downsides - mostly the dose is not realy consistent. 90% of the time things remain in a good balance. Sometimes they don't and I get to carry Josie out of a store because she can't walk any more, or we spend and hour or so with headaches and nausea.
Overall we think that is an OK trade off for no central line.
We are in the process of scheduling a follow up heart cath over the summer to see how it is really going on the inside. But for now we are just going to groove on getting to a good stable place and just try to have a fun summer!
If you want some more . . . I did a longer update on Ms. Josie for the 28 Days of Hearts project that features hearts kids adopted from China. It was done just before we went to Stanford.
We really appreciate all the encouragement and prayers
Thanks for staying with us on the journey.
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