The Hated Phrase

So, the good news is that Abby came home today!  Discharge actually happened pretty quickly and what we ended up waiting on was the lunch that we had dalready ordered and the respiratory treatments she was due to get at 12.  As soon as they were over, we headed out!  Caleb was surprised and thrilled that we were home (we never tell him unless we are certain because we don't want him to be disappointed if something changes), and the kids happily played together before dinner.  Then they had a puppy visit!

Unfortunately, the bad news is that the doctors don't really know why the very high respiratory rates are happening.  They were able to rule out viruses and high CO2 levels, but they weren't able to pinpoint the cause.  The pulmonologist we saw used the dreaded words, "Progression of Disease."  I seriously almost hear "dun dun DUN!" music each time it is said because it's such an ominous phrase.  It is certainly not something the parent of a medically fragile child ever wants to hear. 

So, they sent her home with the caveat that Abby will most likely need increased bipap support, needs to have a swallow study to make sure she isn't aspirating (scheduled for next week), and will have a sleep study in October (previously scheduled) to tweak her settings because she probably isn't being ventilated enough. 

It's hard to hear that your child is getting worse and there's not a whole lot they can do about it.  We are clinging to Jesus and to the hope that getting the VEPTR put back in will improve her lung functioning.  And every day, that wound is even closer to closing!!