Big Exhale

Day to day is so different.  Bella is doing well.  I am so grateful.  Her nitric is down to 1 (!!).  Her FIO2 is at 60% and her PEEP is at 9.0.  She is sating in the 90s (!!).  She has only bradied  once.

We went down to have our Upper GI – required before the              g-tube/fundo.   Transporting a child on a ventilator and Nitric (even of only 1.0) is a process.  It takes some serious time to get ready.  Everything goes with you – every inch of that bed was covered with equipment and supplies.  They take everything they might ever need, in case they need it.  She was given a little paralytic for the procedure and trip.  She decided she had had enough once we arrived in the diagnostic imaging room.  She had to be bagged and she did come back up.  I am so glad that for whatever reason we get the anesthesiology fellows.  They know this sedation world – and I am grateful.   She had to have a breathing treatment and she got several doses of sedation during the procedure.  It was a bit scary to watch the procedure.  Not the Upper GI – nothing scary about that, but to watch my sweet girl and the monitor.  I wondered about Bella.  She has had so many good days in a row.  Then I start thinking, yeah, she is doing so well, let’s move forward.  And then I see how very delicate she actually is.  She is still very ill.  We have been trying to schedule her surgery.  It takes a while to get everyone together – general surgery, ENT, and anesthesiology.  Watching today I wondered if she’s strong enough.  AND I realized why they don’t let parents watch their children have surgery.  I wanted some versed for myself at the end of the GI series.  What would watching my child getting cut apart do to me?  Anyway, I will meet the surgeon tomorrow probably.  We are looking at next week sometime.

Rest well, sweet girl.