Tuesday Morning Update

Good morning! It's 7:15 am and shift change is in motion. Ivey has had a relatively good night.

As of now her heart rate has increased and is fluctuating in the 90's.  We would like for it to be a little higher, but is great improvement over the 50's and below yesterday.  Ivey's respirations have also improved.  Her numbers are floating between 13 and 20.

As Ivey's  heart rate began dipping into the 30's yesterday, she was also only taking about 9 breaths per minute and they were very shallow and labored.  This was the time that she created a little scare.  She was on a high volume of oxygen and at one point they needed to bag her to assist her breathing and were prepping to intubate her.  The concern of getting the tube down due to her surgery was there and a back up plan of re-accessing her trach site was discussed.  All cart was pulled into the room and the PICU doctor and teams were moving into place.  Yes, that was the point my switch flipped back into a mode that hasn't been needed in awhile.  She had a room with the doctor, full of nurses, respiratory and more waiting in the hallway.  Seeing the chaplain move into the room was, well, there are no words.  It's comfort and paralyzingly fear all rolled into one.   With work, they did get Ivey stabilized.

During the night she held her own.  She only has a canula and they are lowering her O2 levels now.  It seems her pain is being managed. We can gear that by monitoring her seizure activity and heart rate. She did have several seizures during the evening, but we seem to have them at bay for now.  Ivey's CO2 levels are okay.

As for the surgery itself, it went well.  The cranial-facial surgeons (4) came in last night and this morning and gave a good report.   She did have bleeding in post-op that required her cranial facial surgeon to be called in. The maxilla bones were cut and now screws are holding it in a stable position.  The hardware is running under her skin.  On either side of her face just in front of her ears near her top teeth area, there are wires protruding from her skin.  They do look a little like antennae.  These are the distractors that we will turn to move her upper jaw forward.  Turning will begin on Wednesday.

Ivey's surgeon did give us the 3-d copy of Ivey's skull that he used to decide where he would make the cuts.   Seeing her skull is amazing.  To see it truly clarifies how this surgery will be a positive for her in the long teem.  Her breathing was compromised and would be more so as she grows if this was not done.  Ivey has never stood a chance at chewing or swallowing properly.

I'll update if anything new comes up.  She is very swollen and bruised.  There is still a good bit of blood draining from her nose, mouth and old trach site.   The blood is on her but it's not worth the pain to move her to clean her up completely.  Matt actually described her to someone as looking like  Rocky after a fight, which is pretty accurate.  But she is still our beautiful girl.

Looks like we are giving up sleep for Lent.

And please say a prayer for a family just a couple of doors down that lost their 9 year old son yesterday.  They need support now.

G.