Today is day 23 here at the hospital. In some ways, it seems like it's been much longer and in other ways, not so long. Maia is still adjusting to the rehab unit routine. Her sleep patterns are a little out of whack and she's having to work pretty hard. 90 minutes each of physical and occupational therapy daily with 30 minutes of speech.
Yesterday, Maia did well with physical therapy. She seemed to struggle more with occupational therapy. Speech therapy is pretty unremarkable at present. I asked the OT and ST if my perception was correct and they both did agree. These are harder areas for Maia and she is more motivated to participate in things she does well in. I think she may be fighting a little bug or something because she took 3 naps yesterday.
Today's therapy didn't go well at all. I wasn't here for the morning sessions, but when I woke Maia up from her afternoon nap, she was NOT a happy kiddo. Screaming and agitated. Her right ear and the side of her head seemed to be really bothering her. She was not interested in working with PT at all. The doctor did come in to see her. Looked at her ear and said that it appeared a little red so he was going to order some numbing drops, but he couldn't get a clear visual. Maia eventually calmed down with some pain medication, but was not herself for a couple of hours. She did eventually cheer up, although we had another meltdown when the nurse had to do site care on her PICC line and again about 10 minutes after she fell asleep this evening. Her Ativan and Oxycodone continue to be tapered so this may play into how she's feeling as well.
On the positive side, the first two of her nasal swabs have come back negative so if the third one comes back negative, Maia will be able to come off the isolation precautions. Although it doesn't have a huge impact on us, it will make things easier for the nurses. She's eating well also. We've got to work on her fluid intake. The doctors want a minimum of 1000ml/day for several days before they are willing to remove the feeding tube. Maia wasn't drinking that much at home before so this will be a challenge. However, we really don't want to have to go home with a feeding tube if it's not necessary.
It was nice to spend some time with Matthew last night and this morning. It's hard feeling torn between the two kiddos. And I miss my hubby, too. Will be glad when we are all home together again.
I know this is a pretty boring post... it's late and my mind is kind of fuzzy so I'm going to quit for the night. This weekend should be quieter so I can share a little more of my heart here (hopefully). I'll leave you with a pic of the sleeping princess.