Thursday, June 23, 2016

Curve balls

We've had a few curve balls the last few days.  Abby had a pulmonary appointment on Wednesday and they did a Pulmonary Functioning Test.  Abby cooperated well and the test was valid...and there's been no lung growth.  She is still operating at 40% lung capacity.  :(  This was discouraging, to say the least.  We have always said that if we have to put Abby through all of this, we need to see improvement.  So it's frustrating.  

I talked with our trusted pulmonologist about what the future may look like if Abby's lungs don't start to grow.  As usual, we don't have anyone to compare Abby to.  So we don't really know.  She could need oxygen or bipap in the future when her lungs can no longer support her.  Her pulmonologist also said that she will be even more susceptible to germs, so we will have to be really careful.  Flu shots and frequent handwashing!!

The other issue is Abby's stance and head tilt, that hasn't gotten better with tons of therapy.  She stands with her knees very bent and walks that way too.  Her head tilts to the right and gets worse when she walks or as it gets later in the day.  If I get her to straighten her legs, she hunches over.  If I get her to stand up tall, her legs go weak. After discussing it with her PT, she suggested I contact orthopedics at CHOP to see what they think.  The nurse practitioner and I emailed back and forth a bit this week and I was told today that Dr. Campbell wants to see Abby tomorrow.  He is concerned about the rod placement and wants to get xrays and check her out.  

So...we're off to CHOP tomorrow, which will be exactly a month after surgery.  Hopefully, we will back on Saturday, but we know enough to pack for a few days.  None of us are thrilled, but we need to figure this out.  We would appreciate your prayers!

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