Myla update 9:55 p.m.

Myla is resting well right now. She came to PICU around 5:45 and we were excited (and mommy a little tearful) to meet her in the hall. I was glad that Ethan, Nicholas, and Zoe were all here to see her briefly. She looked so good considering she had been laying face down for 7 hours. Our first 45 minutes in PICU were rough as she had 5 nurses around her getting her situated, hooking her up to machines, and :( looking at her incision. WOW, I'm not an expert but it looked great. With an extra dose of pain meds she was resting nicely for a little over an hour. She is on a continual feed of pain meds but can bump it up as needed.

She woke and was restless but was somewhat entertained by the infamous Ipad. She love the matching game and despite her medications she did quite well. After 3 other brief forms of entertainment, she became quite restless and was close to needing arm splints so she wouldn't pull on her IVs. She just couldn't understand why all those things were in her hands and foot. OWWWW she said, "hurt"!! But we made the call to give her some anxiety meds and she is now resting peacfully.

On to the doctor's report. I typed all this once but lost it-thank you blogpress! UGH, so I am sure I will miss something this time. But here it goes. Overall, YES the surgery was a success. Praise the Lord!! The doctor was able to do all he needed to do. Her neural monitoring was great meaning they feel good that no nerves were affected today. We will only know this 100% when we see it functionally, but are thanking God for the good news already that there is no new nerve damage. The not so good news is that there are 2 areas of nonfunctional nerves one mid back and one lower in tailbone area. The doctor feels that these areas are directly related to some of Myla's limitations. One being her mobility-difficulty with coordination when running, and leg weakness. Although he says these nerves will never be functional we are praying that God our healer will revive these nerves.

She has a very large opening in her spine where they drilled away the bone to get to the bone spur causing the split. He feels he got good closure of the dura, but emphasized the importance of watching for leakage of cerebral spinal fluid. So continue praying for that. She did receive blood not because she lost a lot but because she was dehydrated. They gave her IV fluids and in doing so watered down her blood to where her counts got too low.

With regards to her surgery in China, the doctor saw no indications at all that her surgery was more than superficial-on the surface. His words were, the area was "undisturbed". We don't know but it is possible that she had a cyst or lipoma that was removed. To me, that is great news as the more you mess with the spinal cord the more chances of damage! Her existing nerve damage just came with the package of her diagnosis he says. So the official name is diastomyetomelia! What a mouth full!

Praises

Surgery 7 hours not 8-10 like we thought it could be

He was able to do all his work without moving the spinal cord or having signs of neural damage

She tolerated procedure and has no side effects from anesthesia or medications, not even nausea

That the time passed fairly quickly and we had huge amounts of peace

That friends and family have been amazing and supportive

Requests

No cerebral spinal fluid leakage

Manage pain and she would be calm

That everyone would get good rest

That she wont fight laying flat- so hard not to pick her up when she was reaching for me!!

No infection

No fevers

That she will eat tomorrow or later tonight

No constipation from all the meds

That I would get 100% over this awfull cold I have had for two weeks-sorry all these prayers are so amazing I had to slide one in there for me!

That's it for tonight, I want to add pics before computer dies