It’s been an interesting couple of weeks.
Maria developed some kind of respiratory thing, but this was different that ones she’s had before. It was bad at night and kept her parents awake, but during the day she was mostly fine. When it was bad she would wheeze and whine and do that “seal bark” cough that was so high-pitched sounded like a scream. When she slept I could see her struggling to breathe.
Cathy got her into the pediatrician the Friday before the long weekend, and it turned out to be a rough visit. 20+ minutes of Cathy holding Maria while the nurse tried to get her blood oxygen. Then 30+ minutes of Cathy holding Maria while I tried to give her a breathing treatment. Then 20+ minutes of Cathy and me holding Maria while the doctor tried to get a followup blood oxygen. By the end of it, Maria was a basket case. She was freaking out, her breathing was really weird, she was possibly seizuring, and so on. Needless to say, me and Cathy and the doctor were basket cases as well.
Her blood oxygen was around 91 and below 93 is when they put you in the hospital. The doctor said any other kid she would put in the hospital but she knows how close an eye we keep on Maria so agreed to let us take her home as long as we promised to head to the emergency room at the slightest hint of trouble.
The doctor had us give her breathing treatments every 2 hours (instead of the usual 4) and a round of antibiotics. Over the weekend we kept going back and forth about the emergency room but Maria got through.
She’s a little better but still wheezy. The doctor now has her on 5 days of steroids (prednisolone) and if that doesn’t clear it up we will go back in.
We have no idea what caused this. The symptoms are much like asthma, although the doctor pointed out you don’t call it “asthma” unless it happens over and over. For now it’s just reactive airway disorder and clinical pneumonia.
Maria hates the steroid and refused to take any of her medicine yesterday. When we have to fight with her to get the medicine in, there’s that much more of a chance of aspiration.
Meanwhile, we had a meeting with the insurance to evaluate Maria’s chance of walking, still trying to get the walker approved. There was a nurse from DDD and a representative from Cathy’s private insurance. They both seemed pretty supportive of our need but they aren’t the ones who make the decision. The PT was there and worked with Maria in the walker we want and we had lots of video of Maria walking with the PT that we gave them so they can show the medical director. We felt a bit more optimistic after their visit, but the decisions have been so nonsensical up to this point that we aren’t getting our hopes up.
In the meantime, Cathy’s been talking to her attorney about all this. She’s not an insurance lawyer but she is an advocate for special needs kids so wants to help if she can. If this latest attempt to the get this medically necessary equipment falls through we have to go to a fair hearing and we’re not sure what that involves.
June is going to be a very busy month. Lots of doctor visits and the Hydrocephalus Conference. It’s going to keep us old folks on our toes.