Life as a Leach

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...

We went into this pulmonology appointment today so nervous and anxious about what would be discussed.  As you all know, Abby's respiratory status has really declined with no indication that it is going to improve.  It's more obvious to us every day that the rib-to-rib VEPTR is the key to Abby's lung volumes improving, but that won't be able to be done for quite some time because her body has to heal from the trauma of the last year.  We discussed that today with our pulmonologist and she is hoping that she can provide support to Abby as a bridge until the rib-to-rib VEPTR is able to be put back in--whenever that may be. The question is, how much support is Abby going to need?  She's needing additional bipap during the day now and seems to decline after every surgery...and she has another one next week.  What will she be like after that?  The bottom line is that we aren't sure how much more her little body can take, or how long she can continue with such l...

For those that are not friends with me on Facebook, our visit to CHOP yesterday included cultures of the wound and new twice-daily cleaning and debriding procedures.  Since we live in a rural area with limited access to home nursing resources, this lovely job will fall on me.  Every morning and evening, I have to remove the bandage, wash the wound with soap and water that stings, and then dig out any infected tissue using sterilized scissors, tweezers, gauze, and applicators.  This is a painful procedure that Abby naturally hates, and her screams and cries break my heart every time.  I feel awful for having to hurt her.  But by stripping her body of the infected tissue on the outside of the wound, she can heal from the inside out.  I have to cause immense pain in order to help my daughter to finally be rid of the infection that has caused her so many hospital stays and surgeries.  What a hard thing to put a six-year-old child through. But then ...