The day before...

Surgery to correct Ailish's huge curvature was scheduled for Wednesday March 16, 2011.  There were physician orders to be followed at home the day before.  There were special washes that I needed to use on her back Tuesday morning and evening and then the day of surgery.  I was diligent.  I did exactly as told.

Ailish attended school on the Tuesday.  She was given a big teddy bear that wore a school shirt with all the names of the kids and staff in her class and words of encouragement.  Everyone was routing for her.  In the evening she was to have a full shower.  There were highlights of that Tuesday evening that stand out in my mind.  I remember exactly where I had her in her chair as I did her waist length hair after her shower.  Because her hair was so long, thick and curly it was hard to put a brush through it and then style it so it didn't  matt.  This sometimes caused Ailish to cry as she did that night.  I remember the words I said to her as if it were yesterday.  I said "aww it's ok Ailish.  It's the last time you will have to have your hair done".  I quickly realized what I said and added "I mean for a few days".  I was horrified that the words had come out of my mouth the way they did.

I had been paranoid for the two years leading up to the surgery that Ailish was not going to survive such a big operation.  I had no basis for my fear but it was ever present.  Ailish was very healthy outside of her obvious profound disabilities but I always worried about tempting fate.  I worried that her not ever having had to "fight for her life" so to speak like so many kids who share the same or similar diagnoses that she had no stress response and that incurring such an assault to her body would throw her into a situation she was ill equipped to deal with.

The rest of Tuesday evening was uneventful for Ailish.  In knowing I was having to spend seven to ten days in hospital (though I secretly hoped for the five the surgeon hinted some kids can go home by) there was a lot of organization that had to happen not only for myself and Ailish but especially for the other kids.  I had a wonderful person moving in and taking over who knows the children well and was more than capable.  That being said the house had to be set up for her success.  This can be a big job.

Ailish settled to bed easily.  I had dressed her in the outfit she would be wearing to the hospital as she would be fasting and so diaper leaks would be unlikely.  We had to leave by six a.m. to arrive by six thirty and I needed to ensure all the kids backpacks were ready for the day, labels in place etc and that I was semi presentable. If Ailish was ready to go with exception of outerwear then I would be that much further ahead.  As far as Ailish was concerned this was an evening no different than others.

Though the up and coming patient was sound asleep unaware of what was about to occur the next morning her youngest brother was wide awake feverish, nonstop coughing with copious secretions.  He too has a condition labelled as "devastating", "unsurvivable" etc etc.  It is alobar holprosencephaly which though different than hydranencephaly also leaves the child with very little brain matter, usually facial deformities and a cornucopia of health issues.  Our little guy though experiencing some of the aforementioned is quite healthy, rarely picking up any bug going around.  If he gets ill it is more likely a urinary tract infection or aspiration.  Both can look the same for my boy.  I wasn't sure what was going on but I couldn't believe the timing.  Finally after a few hours of breathing treatments, much suctioning etc we both slept though mine was not restful.  I was going to have a full day of waiting and worrying and I wanted to get a head start in my sleep.

To be continued....