Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, May 12, 2011

The Details

Shriner's Hospital in Philly called today. (yes, I just talked to them yesterday.) This phone call was to go over any last-minute questions we have before Axel is admitted on Sunday afternoon. We also discussed the details of surgery day:

What to bring:
Comfort items for Axel. He doesn't really seem to have anything that his is attached to, but he does have a couple stuffed animals he likes that I think I'll bring along.

Button-up shirts: Pull-over shirts will have to be pretty big to go over his halo if he gets one. We don't know what hardware he's going to have until the surgeon can open his spine and visibly see his bone. Yes, that creeps me out a bit to write that. Anyway, he'll either have a pinned halo like this one.

Or the new, non-invasive halo like this one.....

Or a customized cervical collar similar to what he's been wearing, only it will limit his movement far better. He can still do his "Stevie Wonder" head thing in his current brace, which is not acceptable after surgery.

So, Sunday afternoon he'll be admitted to the hospital, and the I.V. started that night to insure he is well hydrated. (they might even give the mom a sedative! It could happen.) They'll also do labs and verify that the blood products ordered for him last month are ready. 

Monday morning is the big day!  He'll be taken to surgery sometime between 6:30-7:00 a.m, once he is under anesthesia, if they determine his bones are not adequate they'll put him in a halo right then before they even make the first incision. Otherwise they'll determine that afterward. They'll open his spine and take measurements, then they'll use those measurements to take the appropriate size bone graft from the iliac crest in his hip:
I'm told by my friends who's children have had this procedure done that the hip portion of the surgery is more difficult to recover from than the actual spinal fusion!

Using screws, wires and plates, the bone graft will be attached to his spinal column. Ouch.

The surgery will take from 7-9 hours. He'll come out of surgery with a drain in his hip and his neck. I've had those drains, the are not fun. They're not super painful, just very annoying since they're stitched in and those sutures sometimes pull. 

He'll spend a couple of days in the Intensive Care unit before being moved to a regular room. The trick is to get him up and moving quickly, partly because better circulation helps the bone graft develop attachments sooner. You know, make the kid move when we've just cut apart his hip and screwed stuff into his neck!

I'm nervous. Very nervous. Not scared nervous, just "I want to get this done and over with" kind of nervous. 

Angela is going to be with us when Axel goes into surgery so she can say goodbye to him. She'll hang out with us for a bit until my friend Colleen comes to get her. They're going to have a fun day together, which will be much better than hanging out at the hospital all day! Also, Angela is not allowed in the ICU the night of surgery since Axel will be very uncomfortable. But the next day she can come in for periods of time. Dean and I will be taking turns sitting at the hospital with Axel and keeping Angela busy. Thankfully the Ronald McDonald house (if we can get in there!) has plenty to do!

So that's what Sunday and Monday will look like. Have I mentioned I'm nervous?


Jackie said...

Best of Luck Leah, thoughts and prayers for all to go smoothly. {{BIG Hugs}}

G-Zell said...

Oh man poor baby. :( I will be praying.