Miss Maia woke up at 4:30am today, so by the time she finished breakfast and therapy was ready to work with her, she was cranky and ready for a nap. So, she slept for about 45 minutes between OT and PT, had lunch, and slept for another hour before starting therapy again. Was still cranky and not too eager to work with the therapists this afternoon. I left for an appointment with Matthew and she took another nap while hanging out with daddy. Had some visitors and was heavy-lidded when they left. Thought for sure Maia would find sleep quickly. Nope, she's been fighting it for a couple of hours now. She's more alert than she was at the beginning of the night. I'm sure it didn't help that someone came in to empty the garbage and linen bags (UGH!! Note to self... tomorrow, make sure they are emptied earlier or put them by the door myself). Now, the nurse is in giving medications (she gets something every two hours) so sleep is delayed again. Hopefully, the melatonin she just got will help since the Ativan at 8pm didn't do a thing tonight. Just does not want to give in. That stubborness is what makes Maia such a warrior in this fight! Please pray that we can figure out a routine that works to balance sleep and therapy, but still allows for her to sleep at night.
Can you tell who else is cranky??? Matthew's appointment was difficult and we found out this morning that Maia's stay will likely be longer than we originally anticipated, so I'm feeling a bit stressed. Mark offered to stay with Maia tonight, but I said "no" because I want to be here in the morning for the twice weekly "team rounds." So, I plan to go home tomorrow night. It will probably do me good to have a little break.
I don't mean to be a downer, especially after this morning's post. Just venting a bit... now, I'm off to spend a few minutes in prayer. Perhaps the quiet and dark will allow Maia to finally relax and sleep. Her body needs the rest.
On a positive note, she is doing well eating and docs think that the feeding tube may be able to come out in a few days. She also held on to a maraca (sp?) with her left hand during therapy this morning. Maia is also starting to bring her two hands together on her own which the therapists say is a step in the right direction. Drug levels for one of her seizure medications was low and this will be increased over the next few days. Because of the need to recheck that medication level, she will need to keep her PICC line in place longer. But, I'd rather have that than trying to get a blood draw by the regular method. Maia's veins just do not allow for that.