Life as a Leach

We are home from our visit at CHOP.  I'm going to apologize in advance if this isn't my usual style of post.  I'm exhausted, both mentally and physically! Abby ended up having five appointments/tests done:  CT scan, Pulmonary Functioning Test, X-ray, and appointments with the pulmonologist and orthopedic surgeon.  We managed to get to our appointments on time on Thursday.  After debating whether to call a cab, drive, or even walk, we decided to see if we could drive in.  It ended up being fine. After the CT and PFT, we saw Dr. M, the pulmonologist.  He went over the results and shared his thoughts, but deferred to Dr. C, who would be the one doing the surgery.  So we really had to wait until Friday to get the answers we wanted. We saw Dr C this morning, who went over the CT and PFT, but then asked why we didn't get an xray.  (We were told during the scheduling process than an xray wasn't necessary...)  So, back to radiology we went...

We made it home from Philadelphia!  I didn't bring my camera with me because it was such a quick trip and I didn't want to have to worry about it while we were in the hospital (I do NOT leave it in the car!!), so I don't have any pictures to share.  But we did have some adventures! After driving 4 hours after church and hitting some traffic at the Bay Bridge (shocker) and on 95, we made it to Philadelphia with really no issues.  We stayed at the Double Tree because we didn't get into the RMH near the hospital .  Sadness.  But the Double Tree was very nice and RMH got us a good rate.  We checked in, got settled, then headed out to find the hospital so that we would know where to go in the (early) morning.  We grabbed dinner at Chipotle and brought it back to the hotel, then decided to let the kids go for a late evening swim at the pool.  After all, swimming would tire them out and make for an easy bedtime, right?   Ha!!!! I think we all f...

Matt and I decided to pursue something that we have been thinking about for a while.  It's a big, big step, but I think it's needed. As you know, Abby has a rib-gap anomaly that has caused her ribs to be in pieces.  The concern is that the ribs won't expand properly to allow the lungs to grow.  Until now, we have been very occasionally followed by a thoracic specialist at JHH.  I felt comfortable with him, but he has now taken a position at a hospital in Florida.  Sadness.  Now, our other doctors can't tell us who we should see instead.  They've basically said to just wait and see if she starts to have respiratory issues and deal with the ribs if she does. That didn't sit too well with us, so we made the decision to go visit Dr. Campbell at Children's Hospital of Philadelphia (CHOP).  Dr. Campbell is the creator of the VEPTR rib , and he is one of the only people who has actually seen what CCMS ribs look like!  Here is a  video ...