We had our MRI appointment on Monday morning. For a child who remembers the exact clothing an acquaintance of her parents wore to her house a year and a half ago, she has said almost nothing of what happened, which makes me truly hope that she does not remember anything.
Which is wonderful, because I have a much more vivid memory of what happened.
It started with an irritated, irritating child in the large surgical waiting area. (There are decorative walls throughout the space, but overall it feels too large of a space for such an intimate waiting experience. OK, so I'm not saying I want to be in a closet with 15 other parents of varying socio-economic backgrounds, but it just doesn't feel right.) We had to check in at 8:00 for her 9:30 procedure. Her last meal was at 6:30 the night before, and she was acting accordingly. And I thought this was maybe going to be the worst part of the whole thing.
We were called back relatively quickly to have her vitals taken, then sent back out to wait. 8:30. 8:50. 9:12. 9:13. 9:20. Hello? Bueller? Then at 9:27 we were buzzed (you literally hold a pager like when you're waiting for a table at a restaurant) and we were led downstairs to the MRI center.
I'm not sure what I was expecting, but it was not what happened next. We walked into a small waiting room, and then were led through the door to… a waiting hospital bed. Literally two steps in from the waiting room. At the top of the bed was a large plastic piece with a head-shaped cut out - it was clear they expected her to lay into that. Everything after this happened so fast. The guy who had taken us downstairs had asked her in the elevator what flavor she wanted in her "special mask," to which she answered, "watermelon." As soon as we got in the room, one of the nurses opened up what looked like a lip gloss container (doctor friends: do they really just use Bonnie Bell to scent that shit??) and asked her if she liked the smell. I think she agreed, and then before I knew it we put her on the bed, and she immediately started struggling. There were two other nurses and the anesthesiologist standing around the bed, clearly ready to get this shit show on the road. Bug was screaming and kicking and thrashing. The mask was held over her face as she threw herself around and I turned away and said to Matt, "I can't do this," and started to cry. The messenger guy just sort of stood there (man, the shit he probably sees!). The kicking started lessening a bit, and I turned back around but hid behind Matt's body and held her hand. It is the most disgusting thing to watch and listen to your scared, screaming, protesting kid slowly be sedated. After a few seconds (years?!?) she was down to just some ragged breathing. Her eyes were open a slit, and they told us we could give her a kiss. We kissed her face, and we were immediately led out, back through the small waiting room, up through the elevator and back to the large surgical waiting area on the main floor, buzzer in hand.
In times like these, I don't want anyone to touch me or talk to me or look at me. It was the same way in the PICU, during her surgery, every time shit goes down like this. Matt was trying to be all comforting, since he is the nicer one of the two of us, and it was all I could not to scream at him, "DON'T F-ING TOUCH ME." I think I staged whispered it instead.
We sat outside then came back inside to wait out the rest of our hour, and all I could think about was how grateful I was she wasn't having surgery, and how much more freaked out I was going to be in two weeks. We were buzzed back to the desk pretty promptly, and then were led down to recovery. When we got to her space (C13!) she wasn't there, but literally two minutes later we could hear her voice arguing with the nurse wheeling her bed.
For once she wasn't mad as a hornet while waking up. The nurse was asking her what flavor popsicle she wanted and what kind of juice and she could barely talk. Each minute that passed brought more clarity to her words (although she still sounded drunk). She ate the popsicle like it was a hot dog. The apple juice should have been put in a beer bong so she could have put it down it even faster.
Because she was eating/drinking, we were out of there pretty soon after that. No "fatty, greasy or fried foods" we were told, so of course we drove straight to Con Pane and let her eat an entire cinnamon roll by herself. No barfs! Win!
Even pointing out the marks on her chest from electrodes and on her hands from the IVs brings up nothing more than "these are from when I was at the doctor." She does talk about the "watermelon mask," but doesn't necessarily show fear. We go back again in less than two weeks for an LP (spinal tap) … we'll see if going through the same motions again that morning brings more of her memory back. I know it will for me. Gross.
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Today we had a visit with her ophthalmologist, and, you know, the FUN CONTINUES. She's doing different stuff now with her eyes, and we have no idea why. I told her doctor that I thought, perhaps naively, that since we had done the surgery we were done with anything new, and he said that this surprised him as well. When this man is surprised, or at a lack of answers, it's not something to be taken lightly.
(Interesting tidbit from today: She was asked to watch the movie on the screen across the room so he could watch how she held her head. He asked her who was on the screen. "Anna," she said. "How do you know it's Anna?" he asked her. "Anna has two braids in her hair, and Elsa only has one braid." It stopped him almost cold. In the hundreds of children he has asked that question to, not one has answered that way. He had to look himself because he had never even realized there was a difference in their braids. It's fascinating how telling it is of how she may see the world. In the same way a color-blind child would probably not describe the difference between two objects in terms of the color, she has chosen another piece that is most obvious to her. We don't think she has the ability to recognize faces as well as an average person does (this is perhaps why she remembers people's hair or clothing or accessories more than anything else) … and it's just amazing. It's amazing how children see the world, and what an absolutely unique and wonderful and fascinating perspective ours in particular has.)
So now "we watch her." We go back again in two months. In the world of pediatric ophthalmology, two months is the equivalent of, "I'll see you back here in a week." Shitballsshitshitshit. I fear another surgery. I fear that is where we're headed. It took almost a year of observations and measurements before her last surgery. I fear that we won't know enough about this new behavior before we move next summer.
Everything is open and on the table again. We got one new official diagnosis from genetics (of the non-mitochondrial variety) a few weeks ago, and whatever progress I thought we had made in getting all this jell-o nailed to the wall has been thrown in the trash can. It's easier to solve the mystery puzzle when the puzzle at least stays the same. Enough people look at it and maybe one or two can find an edge piece. It's impossible to solve when the puzzle keeps changing.
Big IEP meeting to find out results of all the assessments and the decision on her placement change tomorrow. Oh, you know, nothing really going on this week at all. If you need me, I will be face first in a pile of white chocolate.
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