For the first 2 months we had Charlie home, everything went pretty smoothly. We went to therapy and a few random doctor's appointments...some were regular check-ups, some were with specialists. But it was generally calm.
Lately though it seems like everything is going wrong and it's happening all at once.
First Charlie started "jerking" so we did long-term monitoring and they said they found no seizures and that the jerking was neurological and not normal, but not cause for concern. I put that out of my head until the jerking became harder and harder and eventually she was flinging her arms forward too. I thought it looked a lot like infantile spasms, which is a really devastating type of seizure. She had also started having other seizures almost everyday. I called the neurologists and they said to increase her meds which I did. Her seizures went away for about 4 days and then came back. We saw the neurologist yesterday and she didn't think it was seizures (I showed her a video). I don't see how it's NOT a seizure. She goes rigid and stares off into space. You cannot snap her out of it. In the meantime, her jerking episodes have gotten better, so he neurologist thinks it's probably not IS though she can't say for sure.
Anyways, during her LTM, they decided she needed a sleep study, which we all know how that came back. Last week we started pushing for a pulse-ox and oxygen at home. Charlie was just struggling a lot and I ended up taking her to the doctor, who sent her for a chest xray, which showed that she did not have pneumonia. Yesterday we were going to the hospital anyways for an appointment so we had her checked out in the ER. Her stats were low and she was blue around her mouth. They took another xray...clear again. They diagnosed her with asthma and gave us an inhaler for her. While we were at the hospital, the order for the oxygen went through so they brought us a tank and the pulse-ox while we were there. When we got home, they delivered another tank and a concentrator.
She has her appointment with the ENT tomorrow. Then she's going to see the endocrinologist. Then a pulmonologist. Then a nutritional specialist. Plus we have to go back for a follow-up with neurology and probably do another LTM.
And there's still the possibility she'll need a trach. And they are concerned with how much she vomits so maybe a jtube or a fundo/nissen.