IEP, the ER, and ABCs

I meant to update the other day with the results of Namine’s first IEP – not to be confused with a preliminary IEP – but we had to bring her into the ER. Things have calmed down a bit now, though, and I can finally catch you up.

Having been somewhat active on the blogosphere and twittersphere, both Jessica and I have heard many stories of IEP meetings gone horribly wrong. So we like to think that we were prepared for the worst – for teachers, therapists, and psychologists all looking to screw us over and deny Namine the extra help she needs. Truth be told, it wasn’t that bad. In fact, it wasn’t bad at all.

After about two and a half hours – and it was mostly just the different people taking turns giving their evaluations of Namine – we arrived at what Jessica and I feel is a reasonable plan. Namine will attend school for two and a half hours on each day she attends, which are Tuesday, Wednesday, and Thursday. Speech, PT, and OT will be given at school, but not for her feet; that will be left to the third party therapists Namine already sees. (This, of course, hinges on what insurance will allow – so even though the plan is, as far as we all are concerned, pretty much set, things may still change.)

It was my intention to post about this that very night, but that night Namine’s sats dropped drastically. She’d had a cough, as I’d said before, ever since the bronchoscopy. Well, it got worse, so much so that her sats dropped down to 70. (She’s usually around 88-92.) So we brought her into the ER, where we sat until 3:00, maybe 3:30.

But things are never just that simple, are they? Of course not. The nurse attempted an IV on Namine twice, once in each arm. Neither was successful, only successful in making her scream and cry. They still needed blood for tests, and they eventually settled for a finger prick. She didn’t like that either, but at least they got what they wanted.

Namine’s sats were still in the low 80s by early morning, when doctors decided (who effing knows why) to send her home. This made both Jessica and I uncomfortable, since we no longer have any oxygen at home. If she needed it, we’d just end up coming back to the ER again. So I called Namine’s special needs doctor, Dr. Gordon, and he called the ER doctors and straightened things out. He felt that we were right to be concerned, and agreed with us that Namine should be admitted for that night for observation.

Time proved us wise. Up in the ICU room, after having had her nose swabbed, Namine threw up bloody boogers – and a lot. After that, she started satting in the high 80s again.

The next day (yesterday) they discharged Namine around 4:00 in the afternoon. Namine has been home – and more importantly, has stayed home – since. Even though she’s still coughing quite a bit, she’s starting to get her appetite back. Being able to take a bath each night is such a pleasure for her, and I love to give them. She asks me to do what I call “rock the boat” (kind of like this), and laughs and laughs.

Namine is getting better and better at saying her ABCs, as evidenced here.

3 responses

  1. What is she sick with? What kind of health problems…if I may ask…

  2. She had a bronchoscopy done, and now she has an upper respiratory infection. The bronch was a checkup of sorts, because she has a small airway due to being born with Pierre Robin sequence.

  3. Michele Eiche Avatar
    Michele Eiche

    You forgot the most important thing: your precious girl, who’s life was in question before she was ever born, juat celebrated her third birthday! !

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