Wednesday, November 14, 2012
Trigger Tuesday (it's now Wednesday but thought of this Tuesday...)
Instead of Flashback Friday today has been Trigger Tuesday. Weird things triggered memories of the day Ailish died. This by far was one of the most stupid events of the day. This was somewhere I think between ten and eleven in the morning just a full day post op from the huge spine straightening surgery. Since wheelchairs are generally adapted quite a bit to accommodate a curving spine Ailish had to have hers adjusted to fit her now straight body.
You will notice that the child is not crying, screaming, moaning etc in agony as one would expect when being transferred after having such an invasive painful procedure. In fact it is obvious the kid is not even awake. She did not stir, budge, twitch or make a sound. I had been saying for the previous hour that this was not right that something was wrong. Nobody paid much mind. This is not normal I repeated. The seating people agreed that most kids are not like this when getting their chairs adjusted post op. Everyone just thought the child was especially covered due to good pain management.
It occurred to no one but me that what everyone was looking at was a kid in a coma.
It still infuriates me.
What was happening at this time, in this picture was pressure that was building in her head and would continue to build until eventually it would kill her that night. The only good news to this day is that at no point did she feel the pain of a head that was about to internally explode. She was peaceful all day. Even when all pain meds but tylenol and advil were stopped at my request in hopes of waking her up did she ever noticeably feel discomfort.
I snuggled with her in her bed. I kissed her. I rubbed her legs and softly patted her chest, all the things she loved. I brushed her hair, washed her face and hands and changed her gown. I begged her to wake up. I didn't have the feeling Ailish was going to die but in having a child with a "devastating" condition it is always a possibility and so as I told her every night before she went to sleep "don't you leave me".
Turns out Ailish had other plans.
Things started to go really bad at six that evening. Again....no one registered how bad things were. They should have. They didn't. I knew things were bad. I did not advocate hard enough.
Things got worse again by seven. I knew it wasn't normal and the teenage nurse either didn't know it wasn't normal or just didn't know what it was and that it was serious enough to alert the doctor. What it was was end stage breathing. I know the text book look of this type of breathing, this was different...but the same.
All hell broke lose at 9:00 pm. Ailish just quit breathing. Code was called. The large group of people and student spectators crowded into the room. They pounded on her chest, shocked her a few times, poured fluid through her veins, tried a chest tube, intubated. Nothing. No response at all.
The time of death is listed I believe at 9:32 when all efforts to revive Ailish were ceased. I know however that time of death was immediately after her last breath at 9:00.
Twenty months ago this week a piece of my heart died. Ailish took that piece days after she was born and carried it in her tiny clenched fist for all of her eleven years and when she left she took it with her.
I love you forever and always Ailish Angelia Wheatley