Moving up in the world, real clothes, a visitor, and dreams of home.
Today we moved out of the PICU!!!!!!!!!
The day started with Mallorie having a short period of agitation which resolved without any medication. And ended on the 10th floor (Neurology floor). All this time I thought we were going to the PCU (intermediate care/monitoring floor), but this is a nice surprise. A great view, a spacious room that feels like we're in a hotel, private bathroom with shower, and a bed (couch) only for me (& Hannah). And lots of privacy. It feels so amazing, and even better than the PCU where we've been before, because with only minimal monitoring (her pulse ox), no one has issue with us closing the blinds to the hallway.
Then we got a visit from Kenzie, and in all that time, I forgot about getting a picture! Here's some picture evidence that she was here, and Hannah and I are enjoying the steaming cups of tea from what she brought. I can't believe she remembered about my love for Twining's orange pekoe tea!
We don't know how long we will be here. Mallorie's not all the way back to normal, and of course, she will continue for awhile on some seizure medication, since she didn't do well with weaning her off seizure medications before. She's still not really alert, although each day shows improvement, but I just asked the neurologist who came into the room about Keppra. I remember a mom telling me when her son was able to go down to just one seizure medication, the neurologist asked her which would be her first choice, and it was Keppra. So I assumed it was a less sedating choice, since going to just that one medication meant her son "woke up." The neurologist told me that one of Keppra's side effects is sedation. So how do we know when she is waking up more and improving, if she's sedated by the med? A shrug.
One frustrating thing about neurology, according to the night nurse, is that - unlike with cardiology - there are a lot of vague unknowns. Unanswered or incompletely answered questions. There is a lot of drawing conclusions from things that can't always be measured or that don't always show up on EEGs. I see what she means. I hope to remember tomorrow, when the attending and fellow come through on rounds, to turn the tables a little and ask them to give me the summary of Mallorie's illness, just to see what the consensus was. Tonight's doctor did mention that she understood that Mallorie hadn't had a seizure for 3 days ... and that means they are counting what happened this weekend, when she required Ativan to calm her so her blood pressures came down, as seizure activity. I think. I'll take the gifts wherever they come from, because somehow I thought I'd still have to play the game of prefacing any request for treatment of any serious agitation with, "I'm not saying this is a seizure or anything, but ...."
On the other hand, if things continue as smoothly as today went, and Keppra is effective for Mallorie, then maybe we don't even have to be concerned about any of that. :)
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”