Life as a Leach

We met with Dr. C this morning.  He had had a phone conference with our Ent and pulmonologist at Hopkins last Wednesday.  Together, they decided that putting the VEPTR back in on the right side was the best option.  He checked her wound today and doesn't feel that it is healed enough to do another major surgery.  The incision he will make it any in the same place, but there's always a higher risk of that new skin tearing if it's not fully healed. So....he will do the surgery, but not yet.  We made an appointment for January and he will reevaluate then.  We just need to keep her healthy until then.  We don't have a tentative timeline yet--we will discuss that at the next appointment.   We are thankful that he is now willing to do it--we just wish it was going to be sooner rather than later.  But we will hunker down for the winter and get that back completely healed!

Our little family spent the afternoon doing something fun in Philly for a change!  Today is Abby's 7th birthday, and she has an appointment tomorrow morning at CHOP.  But today was all ours and we came up after church.  We decided to make a trip to the Philadelphia Lego Exploration Center.  It was a lot of fun!

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...

There's no way to sugar-coat this.  Abby is in respiratory failure.  Her health has declined over the last few months to the point that her tiny lungs can no longer sustain her.  None of the "bandaids" they have tried have done much, including oxygen.  See, it's not an oxygenation issue....it's that her lungs are more or less deflated.  Giving her oxygen doesn't really help that. They're using it to get her levels up a little higher when she is sitting, but it doesn't seem to be helping at all when she is walking.  We haven't even attempted stairs yet. We have had lots of serious conversations with our team here and at CHOP.  Their dedication and sensitivity in all of this has proven to us once again just how blessed we are to have two fantastic teams working with Abby.  Because our plan hasn't been finalized yet and seems to change every time someone walks through the door, we aren't quite ready to share publicly.  Once there is a solid pl...

Well, we're still here.  Abby had a great night and I was very encouraged.  But then she had high rates throughout the day, including a respiratory rate of 95 after walking just halfway around the unit.  We are going to try stairs tomorrow to see what she does with that.   But they can't figure out any rhyme or reason to her high RRs, as they sometimes happen when she is hustling lying in bed.  The one pattern we have identified is that she does better right after a respiratory treatment, but that is to be expected.  I can't limit any movement to only immediately after treatments!!   I'm hoping for answers tomorrow...and to see our pulmonologist.