So - how did that trip to Stanford work out?

Goodness, I wish I could tell you.  I think the PH specialist wishes he could tell you.  Test results were just a mixed bag. . .  But lets start at the beginning.

The day started pretty well.  I woke Josie. got her dressed and medicated and did the same for me.  she got a  light breakfast - a yogurt cup and a bit of noodles, and so did I.

Pink Riding Hood

We packed up and got into the car to head to the hospital . . . and the first sign was her complaining her tummy hurt.  Oh.  In fact she made it all the way to Lucille Packard's driveway.  She lost breakfast just as we drove in.

Poor kid got a strip down and change in the parking lot.  I threw the keys down to the valet and asked him to keep the car windows rolled down . . .  and we made it in time.  Josie, being her irrepressible self recovered right away and spent the rest of the day bugging me for food.

Waiting.  Waiting.  Waiting.  But they have good kid movies.

She looked good on weight, height, O2 and blood pressure measures, then we did the six minute walk.  She pretty much rocked that test.   I'd set up Pandora with Zydeco dance music and she partied and boogied and trotted her way through it.  Her O2 sats started at 97/98, dropped to 65, but bounced back so fast if you blinked you would miss it. The therapist was impressed with her recovery.    The PH doc thinks she does this because of some small VSDs left (on purpose) during her heart repair.

Then the echo-cardiogram.   That seemed pretty routine.

After that the day started to catch up with us.  The Docs schedule was running late.  I was going to try and catch up with a couple virtual friends .. . but we were still waiting and no lunch.

Eventually we went back to a room and caught up with  our super NP Michelle, and the social worker and research worker - plus one of the cardiologists there I had never met.  Sweet lady for sure.

The research assistant played tic tac toe and drew pics with Josie.  We chatted about Josie and what challenges we were working on when we were not managing central lines.  Eventually Dr Feinstein came in and  Josie let him know that he would be a nice person, but he was to"boyish".  The doc was good with that, but staff will consider if there is a way to improve the situation.

Then we discussed test results and  .. .  um confusion.  By most subjective and objective markers Josie is doing well.  Her heart shape has improved a bit, and she is growing and thriving.

But one measure on the echo was awful - her right heart pressure looked like it had doubled.  Based on everything else this seems unlikely - but we won't get an accurate picture until Josie has her next heart cath. (for the medically inclined the bowing of the wall between the ventricles and the jetting in the remaining tiny VSD's don't look like the right heart pressures are increasing wildly.  The pulmonary valve has no leakage, the triscupid valve is leaking a bit, but that is normal considering Josie still has high pressure in the right side of the heart.)

Darn it.  It looks like Dr Feinstein will make a decision about oral medicines after the next heart cath as well.

So we didn't actually shed any light on the situation and we still don't have a clear picture on what her heart/lung  disease is actually doing.  We just know she feels pretty good.  Not that that part is disapponting.

We went to the lab for  test the PH center really wanted - and the lab had no orders for the test and we had no more time so . . . we ran out of the hospital, got the car back from the Valet and made haste to the airport.  Which was the last haste of the day.  The car rental return was slow.  The ticket agent read the times wrong and decided we had lots of time.  The wheelchair assist showed up way late.  The security guys freaked at Josie's medication setup and went through her entire supplies suitcase.  One... . item. ..  at. . .  a . . . time.  And we missed our flight by five minutes.  Honest.  Five minutes.

Southwest kindly stuck us on the next flight so eventually we got home.

Homeward.  Finally.

It did give us a chance to eat before we got on that airplane, but everything else ran late and tomorrow is school for Josie  Everyone is just a bit tired

So, we still have a medical mystery child.  Rats.  And we won't know if Josie can switch to oral meds until her next cath in January.  Oh double rats.