We finally got home this afternoon at 5ish. Last night they moved us from the PICU to a regular room. Much less nurse presence (of course), restroom down the hall, similarly uncomfortable bed, much more noise. The 1st night I didn’t get much sleep because the monitors kept going off (and there was that pesky 64 pulse ox reading that got them stirred up until Maria sneezed and went back into the 90s). The 2nd night I didn’t get much sleep because Maria was awake and pulling at her tubes and wires. Once I saw her with one of the EEG wires in her fingers, and I kept thinking she was going to start pulling the NG tube out while the milk was dripping in (she was on continuous feeds all night). Last night I didn’t get much sleep because they moved us at midnight and Maria was awake until about 4am.
This morning Maria wiggled one of her IVs out. She almost sneezed the NG tube out once, she almost pulled it out a couple other times. They had her arms in soft splints sometimes to keep her arms straight and prevent her from pulling things out.
She was more awake and alert today. Drank her milk when I gave her a bottle. Wasn’t much interested in eating until we got home. Didn’t get the Rx for rectal valium, not sure why; so now I’m still a little confused about our revised seizure plan. It’s not the same as what I discussed with the doc yesterday.
This little incident was pretty serious. Many people in the ER were thinking the worst. I didn’t allow myself to go there. I sure as hell hope it doesn’t happen again. It was not a good thing to come home to paramedics in the house and Maria hooked up to tubes and wires and still having a seizure. I did get some video of it to show her neurologist, not sure I want to watch it though…
Hell of a couple of weeks.