Autonomic Instability, Seriously?!

On March 11, Maria had another “seizure” at school. They called me, said she wasn’t feeling well. By the time I got there, she was having a full-on episode, so I interrupted the nurse, who was talking to someone, and said you have to call 911 (it had been going on for several minutes). I gave her her rescue medicine, no change. Paramedics finally got there, gave her a shot of versed (after what seemed like a long time), I think maybe that worked? I didn’t have my cell phone or my purse, because I just grabbed the van and went to pick her up quick, so I couldn’t call Manolis. By the time I called him, we were in the ambulance on our way to Mendy’s Place (closest hospital). He was so upset/panicked/whatever, that he went to Phoenix Children’s Hospital, so after using the hospital phone several times, finally got him and he came to Mendy’s Place. Sue came to sit with Maria while Manolis took me to my car. I packed a few things (I pretty much knew this time we wouldn’t get away with no hospital stay) and headed back to the hospital.

I don’t remember what all happened at Mendy’s Place, except they were wonderful, it’s not nearly as “beautiful” as PCH, and they wanted to send her on to PCH as soon as possible. They gave her morphine, nausea med, and Benedryl because they thought she had pain. They also did a chest xray and saw a pneumonia starting, but probably not from aspiration. They had her on oxygen and because of the seizures, she had to be transported by ambulance to PCH. I was so used to the super fantastic paramedics that show up when you call 911, that when these 2 goof balls showed up to transport her, I almost lost it. Apparently, it showed, because they told me between the 2 of them, they have 60 years experience, or some crap. Very scary to let her go off with them while I drove my own car…

All I remember about PCH is that we entered via the ER, of course, were in a room for several hours before going up to “the floor” (8th floor). She kept having her “seizures”, they kept giving her medicine, they wouldnt’ stop, they were worried about her “losing her airway”. I honest to God thought they were going to have to put her in a coma to stop the seizures. They finally called a code red or something where everyone comes into the room to quickly assess her and they decided to move her to the PICU (pediatric intensive care unit) on the 6th floor. I remember seeing a super cute guy in the room who wasn’t doing anything but leaning against the cabinet and watching; then I saw him again out in the hall of the PICU, standing calmly, looking concerned, not doing anything. I didn’t ask anyone who he was because I’m convinced he’s one of Maria’s guardian angels sent down to keep me calm. It really did help when when I’d look over at him.

Finally Wednesday morning they hooked her up to an EEG, of course, she had no episodes until 4:30pm and guess what? Not seizures. Definitively not seizures according to the EEG. What? On rounds, I overheard them say it was Autonomic Instability, a term which does not exist in Google. Here we are a month later and I’m still trying to find out what that means.

While Maria was in the hospital, they added gabapentin to her med regimen. She tested postive for Human Meta Pneumo Virus, which she had 3 years ago and was in the hospital for 10 days and out of school for a month. This time only 5 days in the hospital and out of school for a month. Tomorrow she’s going back for the first time since Mar 11.

We’ve been to the physiatrist, who wasn’t very helpful with the new diagnosis. She thinks Maria’s in a lot of pain from muscle spasms because her wheelchair is such a piece of shit that doesn’t fit her or support her back at all. Went to the GI who thinks it’s constipation and maybe reflux, but not chronic pancreatitis (one piece of good news). Went to the eye doc who says her optic nerve is again a bit worse, but has no thoughts about all the other stuff we’re dealing with. Went to the pediatrician, who agrees that this is puzzling, she’s not herself, but isn’t sure what to do because she assumed (as did I) that the neurologist would have answers. Got results back from genetics that she does not have either Rhett’s Syndrome or Angelman’s. She didn’t test for mitochondrial disease, which is what I thought she was testing for, so we have to go back again. Her wheelchair is at Nu Motion, but they’re still making adjustments and it should be ready sometime this week, but they don’t seem too concerned at how poorly her wheelchair fits her now. Thursday is our last appt with Dr Shrader, ortho, because he’s moving back to Louisiana, which I’m positive is a result of politics because he just opened his gait lab and his CP clinic was up and running. Bummer. Dunno if he’ll have any answers for me, but neuro said to look into ortho-related pain that could be causing the shaking episodes. Oh, and if we want to, we can do a 3-day EEG in the hospital this summer. (what’s the point if they’re not seizures, right?) So, bottom line: Nobody knows what it is. Nobody wants to take responsibility for figuring it out. Everybody suggests we go to somebody else to come up with a reason. Awesome! Thanks guys! You Rock!

And among all this, I had a bad infection in my belly button (where else?), which caused me to miss even more work, was very painful, and very scary (doc sent me to a surgeon that day; I still have to go back to him and he still might have to do something to it.)

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