Wednesday, April 30, 2014

Medical Update (Warning: This is Long!)

We got some not so great news yesterday. Our pulmonologist called last night.  (That concerned me right there--it's usually a nurse!). We got the results back from Abby's sleep study, and it showed "severe upper respiratory obstruction." She had an average of 12 episodes an hour where she stopped breathing, as well as 2 central apneas. . We have never had anything like this show up on previous sleep studies. Our pulmonologist is recommending cpap and /or getting her tonsils and adenoids removed--before veptr surgery! Previously, our pulmonologist was very hesitant about VEPTR. She said last night that this is all showing us that we really don't have a choice but to go for the VEPTR.

We were not expecting this sort of news at all!!  This sleep study was supposed to be just baseline information for her surgery, so we were pretty caught off-guard with the bad news.  It makes me want to sleep in her room!  We have also been told to monitor her oxygen levels continuously while sleeping again, which is something we haven't had to do in over a year.  :(

After lots of phone calls with various doctors yesterday and today, the deal is that we know that the real reason for her apneas is her small jaw, which causes an obstruction.  Her reduced lung functioning is just making it worse because she can't breathe deeply enough to get past the obstruction.  Taking out her tonsils and adenoids isn't going to help much, if at all.  What we really have to do is an extensive jaw surgery called a mandibular distraction in order to solve the problem, but that will involve a month of turning external screws.  We don't have that much time before her VEPTR surgery (it's 3 months away, but between an evaluation, scheduling surgery, recovering from it, 30 days of screws, then removal of the plates and recovering from that surgery, we don't have that much time!).  We can't postpone the VEPTR surgery either because of her lung functioning...but we want her to be at her best so that she will recover well from this major surgery.  It's a catch 22!   Basically, something needs to be done, but we don't have time to do it.

She'll be evaluated for the jaw surgery in June. If we go that route, it will probably be scheduled for after the VEPTR surgery.  But, there is also a possibility that the VEPTR surgery may be moved up out of necessity...in which case, our whole schedule and my meticulous planning will go right out the window!!  :)  We won't find that out until the beginning of June though, when she finishes her next round of tests at CHOP.

The only "easy" fix they could offer is to put her on a nasal spray and asthma/allergy med to try to keep her airways as open as possible.  She's had a constant dry cough as a result of the reduced lung functioning, so we are hoping this will help that.

I'm trying to focus on positives, and there are definitely some!  

1.  A new surgeon just started at Hopkins who specializes in the kind of jaw surgery Abby will need!  This surgery is not exactly simple either, and we want someone really great to do it!
2.  Our ENT is awesome, and I trust him 100%.  He is so protective of Abby's airway.  Today, he called back (in between surgeries!!) just 15 minutes after I called his office!
3.  The surgeon doing Abby's VEPTR surgery created the device, and is the absolute ONLY person who has ever done this surgery on a child with Abby's syndrome.  
4.  Abby is still as spunky as ever.  Her zest for life gives me so much strength and hope as we face this!

We would so appreciate your prayers, as this already stressful situation just got a lot more stressful.  I tend to worry as it is, and Matt jokingly said that God must have felt like I didn't have much to worry about right now.  I beg to differ!!  :)  We are hanging in there though.  Thanks for praying!

2 comments:

RicKim said...

We love you all! Praying!
RicKim

Raelyn said...

Julie....
I am praying!! For Abby!! For you!! For the doctors!! For miracles!! ;)
Love you later, Raelyn