Well, we just got back from Stanford for the final checkup on the clinical trial.
Unfortunately they are still not happy with what they are seeing. The oral meds are just not doing the job as well as the central line. It looks like the pressures inside her heart and lungs are spiking up to super systemic levels at times (she is normally systemic which is still about three times too high). One of her heart valves (tricuspid for my technical peeps) is leaking from the back pressure. And during the exercise tests she can't keep the oxygen levels in the body up as well as they would like (mid 80s on the central line and mid 70's on the oral meds. In non technical language she really does get a bit blue)
The good news is that while the docs are not real happy Josie is pretty much her cheerful self.
The plan is to increase some of her current medications and see if we can get her to a better place.
After about a month we go to the local children's hospital for another round of testing.
Increasing the medication is not a lot of fun. it can make Josie feel pretty bad. It means less sleep for Mom and Dad.
But experience says that once we get to the final dose and she gets used to it the medications won't bother her so much.
We really appreciate all the encouragement and prayers
Thanks for staying with us on the journey.
Josie playing hangman with the research coordinator....
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