Today was the last day of Kindergarten and Maria had to stay home. I did take her to school for a few minutes to give gift cards to some of our favorites and to pick up all her stuff (she had a lot of stuff!). The saddest thing I heard is that Nurse Gina isn’t going to be there next year. A nurse from another school is. We really like Gina. She’s going back to school to be an RN. Sure hope we like the next one!
We did get to see Elisa, one of Maria’s paraprofessionals. We really hope she’s with Maria again next year. She’s great with her. We saw 1 of her 3 teachers, missed the bus driver. Made it a quick trip because we needed to rush home to eat and have another breathing treatment.
Maria’s doing much better today. Both her nurse and her ex-nurse special ed teacher told me they were worried about her yesterday. She ate pretty well. Drank so-so. Good mood. Still breathing crappy.
We went to the neurologist this afternoon. He was very concerned about the aspiration pneumonia and talked about a G-tube. Not necessarily recommending it, but told me to keep an open mind about it. Some families really like it after they get it. He wants me to follow up with the pediatrician on another (damn) swallow study. He mentioned that a couple times, so did the ER doc. aaarrrgggh. He’s going to admit Maria in their Pediatric Epilepsy Monitoring Unit in July. The papers say the child stays for 2-5 days or longer if necessary. I showed him the 2 videos from school and the one we took in May 2007 of Maria having seizures and he didn’t see anything in any of the videos (even ours) that looked like a seizure to him. He did reach out and touch Maria once when she moved her arm and said that looked to him like it could’ve been a seizure. What?! Since there’s so much confusion about it, he’d like to see her EEG because that’s the only definitive proof of what is/isn’t a seizure, and I need some additional info to provide to the school next year.
He said most kids aren’t adversely affected by using generic meds. Although we bumped Maria up a lot on one of her meds, he says she’s still pretty low dosage compared to some of his other patients. The seizures could be increasing the aspiration or the other way around. There’s no specific way to determine an absence seizure vs spacing out and not paying attention. The main thing is if you can get them to react, smile, etc, then it’s not a seizure. Calling Maria’s name is not a good way to determine if she’s having a seizure or not. He’d never heard of fish oil stopping seizures, but it is consistent with a ketogenic (high protein, low carb) diet, and fish oil is good for the brain.
I think that was about it. Every time we see him, I like him better. I appreciate his approach; it’s methodical and measured and thoughtful and conservative. I didn’t ask him about the 2 new meds, dang it, so I don’t know if we should start them or not. Probably not until the antibiotic is done because holy crap we have to give her a lot of drugs these days! Ridiculous as it sounds, I’m looking forward to the seizure study because he knows Maria (and us) better than the other doc did. Their PEMU has been running for longer than the other one has (the other one was fairly new when we stayed there 3 years ago). I’m interested to get some answers and am confident that this doc won’t say “no more questions” like the other doc did the 1st time we did this…
OMG. Only 1 more full day with Manolis. and OMG Maria’s not in Kindgergarten anymore. She’s going to be 6 years old in less than a month and going to 1st grade. wow