Well. Here it is.  The Roth Family blog.  Lots of people have asked us to do this - and because we appreciate your interest/concern/etc. it has come to fruition.  Perhaps a little sooner than planned.  My goal, was to have this up an running for Finley's scheduled heart repair - which is/was supposed to be May 11th.  The current status of that surgery is now unknown.


Finley was admitted to the hospital this week for some routine pre-op testing.  A normal child would not have required an admission for this, but our little Finley is special and because of her blood sugar issues, she had to be admitted overnight so that she could be put on IV fluids and go without food for the anesthesia she needed for the CT and echocardiogram she was to have Wednesday.  Well, Finley had other plans.


Finley had a great day Tuesday - had her first swallow study since she was three days old and she got clearance to start baby foods and cereal! Then she had an abdominal ultrasound, as a follow up to Saturday's ER visit and the ultrasound was inconclusive.  Wednesday the fun began.  The anesthesiologists had a difficult time intubating Finley and ended up having to use a very small tube that is normally reserved for premature infants.  After the CT and the echo were done - they called Finley's ENT in to have a look at her to see if he could determine why they had problems getting the tube in.  When the doctor did the bronchoscopy, he found that he airway was 75% closed off - he believes due to scar tissue that had formed as a result of previous intubations as well as an infection.  Its a condition called subglottic stenosis.  In his words - he's never seen anything quite like this (he's seen subglottic stenosis - never quite like Finley's).  And, coming from a doctor as well known and well respected as Dr. Holinger - that is NEVER a good thing.  Needless to say, she was immediately admitted to the Pediatric Intensive Care Unit (PICU) and she has been there ever since.  So, you can imagine my shock/horror/dismay to get a call from Mike Wednesday afternoon after having expected her to come home that day and instead find out she is in the PICU, where, quite frankly, although that is where she went to recover from her first heart surgery, we associate mostly with her admission for her post surgical wound infection in her chest.  Not a good memory.


The good news is, Finley is making some slow progress.  We've not seen her gorgeous little face since Tuesday really because since she's been in the PICU she's been attached to a BIPAP machine via a giant mask that covers most of her face and which is forcing air down her throat (literally).  They are giving her this thing called heliox which is a combination of helium and oxygen - since the helium is a lighter gas than the oxygen - it binds to the oxygen particles and carries them more easily through her airway.  As you can imagine, the mask is terribly uncomfortable for her so they are keeping her sedated - she has woken up a couple of times in a fighting mood and tried to take the mask off - this never makes for a good situation because it usually results in her dropping her oxygen saturations, etc.  Fortunately, Finley behaved all day yesterday so the docs are thinking about giving her some "mask free" time today and see how she does without the heliox.


So, this is really where things are now.  We aren't certain if Finley will still have her heart surgery on May 11th or not.  It may be sooner, it might have to be later depending on what happens in the next couple of days.  There has been some discussion by her cardiologist and cardiac surgeons as to whether it makes sense to send her home if she recovers and instead just do the surgery early.  Then, there is also the possibility of her needing to have surgery on her airway.  The decision on that is on a day to day basis.


So far, Nate is handling this as good as can be expected, however, with each hospitalization, things get a little harder on him.  When Finley was born and spent  most of her first four months in the hospital, Nate had never really gotten a chance to know his sister so it didn't seem as difficult.  He has definitely grown attached to her though and know she's not here, asks questions, and does the sweetest things - like last night when we went upstairs for bed.  When we got to the top of the stairs, he went into Finley's room and kissed her IV pole and said, "I love you Finley." And then he said, "Mom, I miss Finley.  Finley is my best friend."  How sweet is that???


Well, I think that is all for now.  I've done it.  I have finally started this blog. Phew.