Surgery tomorrow---we hope

 I carried the phone around all day, expecting the normal call from the anesthesia dept......nothing.
Once, they did not call until the evening, but I decided to call the office.  Of course they stop answering phones at 4, so I got machines, that I was afraid would not be checked until Wed.
So finally, I got the Dr. on the phone.  He said he did not recall seeing Avery's name on the schedule....but would check.
I scheduled this surger about 2 months ago---AGHHHHH!
They never figured out what went wrong, but said to show up at 5:30, and they would do the surgery.

 It's a good thing, or it might have gotten ugly.  Don't mess with a moma and her schedule!
A 2" incision will be made in Avery's hip, and a portion of hip bone removed.  That bone will be placed in her upper jaw, where there is currently no bone because of her cleft.  All this is done so that there is a complete jaw bone to attach implants to, in years to come.  She will have a pump in her hip for pain, at least the 1st 24 hours.  They said occaisionally patients go home the next day, but usually stay 2 nights.  Based on Avery's track record, I am planning on being at the hospital til Saturday.
                                           Please pray for her, and DH, who will be taking care of things at home.
 After the surgery, there is to be no "P.E." for 2 weeks---ugh!
                              Notice the tail contributing to the droopy skirt, and the ears.
An important call that I DID get today, was from genetics.
We have to go in Monday, to discuss AJ's condition--no surprises there.....I knew there was an issue.
He has mosaic trisomy 8.
The mosaic part means that only some of his cells are affected....35% to be exact.  Babies with this in all cells  result in miscarriages, always.
The trisomy 8 part means he has 3 #8 chromosomes on that 35% of cells.
Anywho....every single thing we had noticed about him, and questioned Dr's about, is on the list of symptoms.  He has over half of the 59 symoptoms.  They include absent corpus callosum, heart defect, developmental delays, mis-alligned eyes, bone problems, jiont problems, and the list goes on.
At our appt next week, we will go over long term effects and expectations.
So, while none of this matters in some ways (because God made AJ, and we love him regardless), it is important info as well.

AJ was at the ENT while we were outside, therefor, no pictures of him.
Good news on that, no infection, wax removed, hearing test to be repeated soon.
AJ still has to see the neurologist next month, and a bone specialist.

Also in medical news, Waid has an appt with the low vision specialist next week, and he can finally get some new glasses!!  He has had 3 sets of lenses, and super glue is holding one arm on.....so we are very excited to be getting new glasses.
Next month Wes sees the endocrinologist, and Waid will have his normal exam under anesthesia.
Then HOPEFULLY we are done with doctors for a couple of months.

1 comment:

  1. Praying this morning for sweet Avery!