Pre-Op Day Went Well!

It has been a long 24 hours!

Pop Pop arrived last night around 8:30pm and had to hit the ground running...I had typed up the week's schedule of kids' activities, given him lists of names and phone numbers and carpool information, had entered many locations on my car's GPS for him, left lists of meals I had left in the freezer, and gave him the quickest possible briefing on what the week would hold for him and my big kids.  Not the normal reception I give to beloved family members who come to visit; I had to preface everything when he first came through the front door with "welcome to my world!"  I should have added "...hang on tight!"  Speaking to him throughout today, he is doing fine.  The worst thing so far is that he can't get our TV to work--but that's part of my world, too.  The big kids are faring just fine--even though I miss them terribly--and I am so thankful to know they are in good hands.  A stretching experience for all of us, for sure.  Thanks Pop Pop!

Once we had given the rapid fire list of instructions to Pop Pop, we loaded Tom's truck and hit the road around 9:30pm.  We made it about 2 1/2 hours and finally stopped to sleep.  Lilly, thankfully, fell asleep before we even were out of Niceville, and slept the whole drive.  Up early, we were back on the road to Birmingham by 7am.

Our day at Children's Hospital began in the radiology department, where (in order to avoid general anesthesia two days in a row) Lilly was to undergo a CT scan WITHOUT sedation or anesthesia--a change in plans made yesterday, when we were still under the impression that they were going to put her under in order to guarantee a successful CT image.  Lilly rose beautifully to the occasion--what a trooper.  She managed to successfully hold still and hold back her tears and fears for the CT scan.  On a roll, she then--for the first time EVER--managed to undergo a battery of lying- and standing-x-rays without a single whipmer or tear.  Amazing how far she has come, and what a great God we serve--I know he is hearing the prayers of so many of you! 

Following radiology, we were back to neurosurgery to talk to Dr. Oakes about what he saw on her 3D CT reconstruction of her spine and what his plans are for the surgery tomorrow.  Here is my non-medical take on what said: he sees no bony or cartilege structures forming any kind of a "septum" between the halves of her split spinal cord, which is a good thing.  He suspects there may be some "meningocele manque," or "false nerves," which don't show up on MRI and are basically fibrous membranes that could be acting to restrict the movement of the spinal cord.  He plans to look for those by inserting a very very tiny scope through her sacrum and look as far up as her T10 vertebrae.  If he sees them, he will remove them, and will work his way up as far as he can with the scope to ensure he removes all of them.  He does not feel that he can look any farther up her spinal canal than that with the scope, and does not feel the risk of actually cutting her farther up and opening up her spinal column is worth the risks.  He readily admits there are many unknowns and he (and we) will have to take things as they come tomorrow.  He could be done in as little as an hour, but it could also take many more hours, depending on what he finds with the scope. We are praying for the best. 

With no rooms available at the Ronald McDonald house, we are "roughing it" at the nearby Hyatt place, which could also act as a recovery room for Lilly if things are easy tomorrow.  She will spend tomorrow night in the pediatric intensive care unit (where we are not permitted to stay overnight...my mama brain cannot get wrapped around that one yet), and then from there either get moved to a regular hospital room for 3 more days, or perhaps get discharged to lay flat in our hotel room for 3 more days to prevent any spinal fluid leaking. 

So, we had a lovely dinner at a place called "nothing but noodles" which Lilly loved, and are now bathed and getting settled in for the night after checking in with Pop Pop, Jared, and Anna. 

Early morning tomorrow--6:30am show time, with surgery likely to begin by 9am.  Thanks for your prayers for Lilly!  We have a wonderful support team.  Thanks for the many facebook messages and e-mails from many of you. 

Stay tuned on facebook for brief updates, and more details here as time allows.  Night night, all.