We are still on hold until the home health company brings us her BiPap machine, which is actually a ventilator. I got a call on Friday from the company who services Maddy's O2 and will be providing the machine saying they have to do a home assessment before they can bring the machine. I had to meet their Respiratory Tech at the house and answer a hand full of questions. It was all very silly but I understand why they have to do it. Because we didn't get that done until late Friday I'm not expecting they will get us the equipment before Monday, maybe even Tuesday. Which means we are suck here because the docs want her to sleep with the home unit at the hospital for one or two nights while she is being monitored before they let her go home on it.
In the mean time her latest blood test results for antibody levels came back and she is back in the "high" range. So they ordered her to start doing IVIG again. You remember IVIG right? It's that IV treatment that is like a mild version of chemo therapy. Takes quite a few hours to infuse, usually makes her have an allergic reaction and leaves her feeling like hell for a few days after! We thought the doc said she is too weak to attempt these treatments to remove the antibodies at this time. But yesterday the doctor said Maddy has improved so much in the last few days that he wanted to get right on it. Dr. Rolf came in this morning and confirmed that they will want to do IVIG monthly until we "knock these suckers down again". He is also going to consult with another doctor to see if she is eligible to do a treatment we haven't tried called Photopheresis. (not responsible for the accuracy of the wikipedia content in the attached link)
So thats the game plan now. Get machine for home, stop retaining Co2, gain weight, fight antibodies and see how much better she can get. We are going to watch the Gasparilla parade from our hospital window now.