The Daughter Chronicles

Tuesday, May 16, 2006

The crazy lady at the hospital

I have a bunch of stuff to post, so I might be busy here for a few days. I know, I say that a lot, but I can think of at least four things I want to write about, including this post about the crazy lady at the hospital.

Yesterday I received a phone call from Phoenix Children's Hospital. The last time Mia saw her neurologist (Friday 5 May, two weeks ago), he suggested she get another EEG. She has gotten a few since her accident, just to check her seizure activity and see if her medication needs tweaking. This is another of those. He said the scheduling department would call to set up an appointment. That is why they called.

I knew we were in trouble when the crazy lady (CL) referred to Mia's neurologist as a "she." He's quite a manly woman, apparently. That may have just been a pronoun mix-up, but it signaled the craziness to come.

The CL said that she had the Sixth of June open (she had some appointments next week, but my mom will be in town and we'll be very busy, so Mia couldn't make it). Fine and dandy. She had a 9:30 a.m. appointment, but I told her Mia would not sleep if the EEG was done at that time of the morning. Long-time readers will recall the importance of sleeping during an EEG (anyone who knows anyone who's had one will know this, too). So CL looked in her appointment book and asked when Mia usually goes down for a nap, and I said about one in the afternoon. She said they had an appointment for that time, so I said that was groovy.

At this point, CL had not done anything truly crazy, and I should have simply gotten off the phone and all would have been well. The last time Mia had an EEG, however, she had not slept and it wasn't terribly successful. So I said, "I can't guarantee that she's going to sleep." Boy, was that a big mistake! CL told me that she had to be sleep-deprived before the procedure. I told her that Mia had gotten EEGs before and I knew she had to be deprived of sleep, but I still couldn't guarantee that she would sleep. This woman seemed to think that if you tell a brain-damaged three-and-a-half-year-old to sleep, they will simply drop off. If you tell a non-brain-damaged three-and-a-half-year-old to sleep your chances of success are sketchy, and with Mia, those odds go way up. CL said to keep her up until 10 the night before and wake her up early. I said she usually goes to bed around 8 and we'll do our best to keep her awake, but if she falls asleep we're not going to smack her to wake her up. CL said to keep her active, and because I didn't want to lose my temper (I wasn't angry throughout this exchange, and was laughing a lot as I explained this to her), I didn't point out that Mia is often inactive because she can't do a lot. I repeated that if she wants to go to sleep the night before, I'm not going to keep her up. She asked when she wakes up in the morning, and I told her we'll wake her up at 5 or so, and that made her briefly happy. But then I said that even if we keep her up until 10 and wake her up at 5, there's still no guarantee that she'll sleep in the EEG room. I said, "You put all that goop in her hair and attach all that stuff to her, and she has to sit up through it all - it's a lot to deal with." She kept repeating that we needed to deprive her of sleep, going so far as to compare it to a surgeon telling someone they can't eat before surgery. I said denying her food is one thing, but if she is literally falling asleep at 9 o'clock at night I'm not going to stop her. She mentioned something about writing a note to the doctor that the parent was not going to cooperate and deprive her of sleep, which almost (almost!) made me lose it. I laughed again and said I would do all I could to keep her awake, but that's still no guarantee that she'd sleep. It was like I was a wayward student and they were going to put something in my permanent record: "Father refuses to help doctor track his child's brain activities." Sheesh! Does this woman even know anything about children? Every day Norah rubs her eyes and whines because she's tired, and then we put her in her crib and she rolls around for an hour struggling to stay awake. Kids are weird.

So I finally told CL that I would do everything within my power to get Mia to take a nap during the EEG, and that seemed to placate her. I got off the phone and just stood in wonderment at the conversation I had just had. Is it any wonder some people go up in bell towers with high-powered rifles?????


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