In less than 48 hours, Miss Maia will be home from the hospital after 38 days. Unbelievable to think that we have spent over a month here. Truthfully, I have mixed emotions. I am glad that she will be in familiar surroundings (and that I will be, too) and hopefully thrive. I am discouraged that she will be returning home so "different" than before. I had hoped for a bit more progress before her discharge and I am concerned about her intake.
Maia vomited at breakfast and lunch today. Small amounts both times, but she is so "urpy" and "burpy." Docs ordered simethicone to see if this helped, but I didn't notice any difference after she received it at lunchtime. Food and fluid intake has continued to gradually decline. I did see that one of the new seizure medications can cause mouth and throat irritation. I don't see any evidence of this, but did mention it to the docs today. Although I would love it if Maia was able to eat her regular diet, if she needs to "live" on liquid nutritional supplements for now - that's certainly manageable. My bigger concern is that today she didn't maintain enough fluid intake, either. Docs are aware, no answers.
The OT and I gave Maia a bath this morning. We put bath blankets in the tub and sat her on those. She did pretty well, but definitely needed guarding to make sure that she didn't hit her head on the edge of the tub or the wall. Still trying to sort out what our best option is for bathing. Thank goodness right now, I can just wash her head with a washcloth since her hair is so short. It is growing... one of my friends said, "Well, it's almost like when you brought her home." Yep - it was awful short then, too.
While we were working on the bathing, Mark had the chance to talk with the rehab doctors. He asked about Maia's prognosis and why she was not responding as well as they had anticipated. Dr. N explained it this way. If a person has a stroke, the injury is localized to one area of their brain. The brain is able to rewire working around that area. Maia's injury was to the entire brain which makes rewiring a lot more difficult. Mark said the doctor tried to be encouraging, but conceded that she may not return to her previous level of functioning. I want to believe in miracles and claim complete victory for her (as many of you are doing), but for now... I may just have to rely on your assurances. My heart feels like it is trying to prepare me so that I am not devastated if that doesn't happen.
Maia is staring to make a few more sounds which is encouraging. She definitely has more spark and life in her eyes than she did last week. The PT said that she felt like today has been Maia's best day so far.
We had a fun visitor at lunchtime today. Dr. Jack came to see Maia. She was so excited when he came through the door. Loved seeing her smile!! This pic isn't great, but I don't have my camera cord to down load from my camera to the computer so the pic from my phone will have to suffice for now.
Maia made it through a small dinner without vomiting which was a positive. On a humerous note, I did wear a brown shirt this evening in the event that bowel care was as exciting as last night. I managed to keep my clothes clean this time, although I still should have worn gloves - lol!!
I've gotta quit for tonight, I am struggling to keep my eyes open in spite of everything I want to say. Hope you all sleep well!