Got a call from Ann Arbor today, and they want me to go to their pulmonologist Friday morning BEFORE I see the neuroogist and have pheresis. They're going to do another ABG (arterial blood gas) and try to do some pulmonary function tests (which is almost impossible without a cuffed trach). SO, we (Doug, Jacob and I) will be headed down tomorrow afternoon, mid-lake-effect snow storm, to stay at a hotel so we don't have to get up at 4AM to get ready and drive down Friday. It would WAY too long of a day for me, let along Jacob. Who knows, maybe we'll leave early enough and get to go to Cabela's or something. Doubt it. But whatever.
So. They need more pulmonology info so the insurance company will pay for the cough assist machine. This is the only immediate step before the last step they are suggesting: putting me on ventilator at night to rest my muscles and stretch out my lungs. Sounds just great, except for the fact that this is what I've been fighting for the last 4 years because in order to do this, I would have to have the Shiley trach. (Just think of shoving a sharpie-sized marker with a swimmie on it through a hole in your neck. Then every time you turn your head you cough and hack and need suction. Oh, and there's the lovely 1 inch padded band that has to go around your neck, to hold the monstrosity in place.) Talk about reduction in quality of life. Yes, it really is that bad.
But what about the Rituxan, you ask? Ah, yes....the wonderdrug that may take 6 months to kick in (which I was aware of, Cellcept is the same way). The docs don't think that I will improve quickly enough to feel any better until it kicks in, and that would mean I would be susceptible to respiratory crisis at any moment. And I can't live like that. My family can't live like that.
So I am asking that you would please pray that I get this cough assist thing, and that it works. My only other option will be that horrible Shiley trach. I haven't been sleeping well...I'm exhausted already....
The GOOD news is that Ann Arbor is sending a referral TODAY to the homecare place so hopefully by next week I will have access to the Medical Social Worker. SO. I'll keep ya posted.