Wednesday, January 5, 2011

And the Fun Continues....

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.


Renee Ann said...

Praying that "all things to work together for good" for you. Also praying for your peace of mind and your rest . . .

Patty Ann said...

I am so sorry. I am praying for you. I think this Sunday I will also fast for you. I hope all goes well and that you get the relief you need.

Rachel said...

I can't begin to imagine what a difficult time this is for you. Stay strong, there are lots of people pulling for you. As always, you remain in my thoughts and prayers.

jo said...

For he strengthens the bars of your gates;
he blesses your children within you.
He makes peace in your borders;
he fills you with the finest of wheat.
He sends out his command to the earth;
his word runs swiftly.
He gives snow like wool;
he scatters hoarfrost like ashes.
He hurls down his crystals of ice like crumbs;
who can stand before his cold?
He sends out his word, and melts them;
he makes the wind blow and the waters flow.
Psalm 147:13-18

I am praising God, because He that will makes the snow fall with a breath is the same God that can help you breath and cough. By whatever grace-filled means that is: a new machine, new medicine, by faith. Whatever, He is surely sovereign to complete a good work in you, His daughter.