So we are back in the hospital again. The blood work did not hold as the doctors were hoping and the liver levels jumped up indicating the liver was in distress. So yesterday night the team called us in for more vacation time at UNMC! She is doing daily plasmapheresis again while we work on a different treatment because the last one didn't work. There is a drug that they wanted to try last time but couldn't becuase her body was in such a bad state. So now we are going to run it, but it takes some serious insurance work to get going. I spent the day on the phone with the company who makes the drug, Tri-Care and the Hematology Nurse. We should get our answer in the next day or so. It is a rather new drug that takes 5 weekly doses (each takes 30 minutes) and then bi-weekly doses for the rest of her life. It also runs VERY expensive for each month. Talking to everyone today, it shouldn't be too hard to get approved if we all do our part. If not then she has to do the plasmapheresis every week for life. Once the insurance and details are worked out it takes about a day to make and ship the drug and then they will administer it. The next day we should escape again if everything goes well. Really hoping this is all done by Friday night at the latest.
She feels okay for the most part. A little more tired today than usual but that is because the body is losing hemoglobin and red blood cells again. I spent the day with her but I was mostly bothering her with all of the phone calls.
I came home toninght and the kids and i just finished up dinner. Kids are doing well. Just hanging in there really. I'm fine and actually going to be doing some school work tonight. Aside from the medical roulette we play, life is pretty boring!