Life as a Leach

We got home late Thursday night (sorry to those of you who aren't on Facebook and didn't know that!  I'm terrible about posting here after we get home and things are crazy.)  Abby has had a relatively good couple of days, although today her respiratory rate was a bit higher.  We are trying a different technique with her vent to see how her body reacts to it.  It's called a "Sip and Puff," and no it is not illegal activity!  Basically, it's a concentrated bipap setting that gives more pressure for a shorter amount of time.  The idea is that once she gets used to this, she may be able to do this instead of spending hours on the bipap every day.  She can just "sip and puff" for 10 minutes or so as she needs it.  She is adjusting to it pretty well, but it requires you to only breathe through your mouth and that's pretty weird for anyone.  For right now, we are doing the sip and puff in between treatments and still doing the longer times on regula...

This week is going to be a busy one around here.  Abby has 2 appointments in Baltimore on Wednesday.  She needs her hearing aid mold redone (it squeals constantly!) and she has a pulmonology appointment.  Not too much has changed with her breathing--she is usually still requiring daytime bipap, and sometimes needs it twice during the day.  There doesn't seem to be a rhyme or reason to it, except that it is always in the afternoon.  We have kept the temperature in our house lower in hopes that heat will not be a factor, but the weather has really been pretty mild anyway.  I don't think our pulmonologist will change much at this appointment, since there really haven't been improvements.  I have a feeling we will just "stay the course" with daytime bipap as needed, respiratory treatments and airway clearance 4x a day, and inhaled steroids 2x a day. On Friday, we have appointments at CHOP with the infectious disease team and our orthopedic team.  Th...

Abby woke up really well after surgery and was watching Mary Poppins in the PACU.  We were happy to be able to go back to our room on the 4th floor instead of the PICU!   We are here for a few more days while we figure out Abby's breathing once again.  It's been mentioned that this respiratory rate of 80-100 breaths per minute might be the new normal, which I can't accept!  I didn't even like the new normal of 60 bpm!!  If her rate increases after every surgery...well, we can't have that. The pulmonologist reiterated the concern of her catching a minor cold being very bad for her.  Looking at her tiny little lungs on an X-ray today was disheartening. Caleb was able to go down to the atrium today for Video Game Day with Microsoft.  He was pretty much in heaven playing Minecraft for 2 hours!  I was shocked that there were open gaming systems the entire time we were there!  I thought it was going to be packed!  He also got a nice drawstring...