Sunday, October 8, 2017

Adjusting to the New, New Normal

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 regular bipap.  The hope is that this will allow her to be off of the bipap more often though.

A lot of people have asked if we have a plan yet.  It's not a clear-cut answer.  At this point, the doctors at CHOP have decided that Abby is not strong enough to withstand such a big surgery when they put the VEPTR back in.  Because of the scar tissue, it's an even bigger surgery than before.  This was disheartening to us because we know how badly she needs this surgery, but we also want her to be safe and strong enough to recover. 

It has been determined that Abby needs to have a trach so that she can get the ventilation going straight to her lungs to help her breathe better.  Too much of the pressure has been leaking out of the nose and mouth and has a long way to travel to get to her lungs, so she's not getting as much pressure as she should be.  A trach is the best solution to get her breathing better.  (And yes, we do remember trach life all too well!)

Unfortunately, this is also not a straightforward trach and there's some question as to whether our ENT will be able to put the trach in.  Lots of doctors from CHOP and Hopkins need to talk together to discuss the plan of action.  It will be a carefully orchestrated procedure with many hands involved, if it happens.  Our wonderful pediatrician is helping us to coordinate all of that so that I don't have to be the go-between all of the time.

So while we would like to say that we have a plan, quite a few pieces of the puzzle need to fall into place in order for that to happen.  It is an unsettling place to be, and we are anxious.  We certainly never thought that we would be praying for a trach, but we would ask that you all would join us in praying for that because it is the best option for Abby at this point. 


1 comment:

Mary Lou said...

Julie....
Thanks for the update, Friend!! Hugs and prayers!! ;)
'The only thing I knew how to do was to KEEP ON KEEPIN’ ON like a bird that flew' –-Bob Dylan ;-D
Peace out, Mary Lou