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Medical Update

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You know that vent weaning we were so excited about?  Well, that's on hold for a little while.  :0/

Abby has an infection and has been on an antibiotic for a week.  It's a 10 day supply, so things should be pretty back to normal by now...but they're not.  So they're going to start her on another antibiotic for 14 days that is put in through a nebulizer directly to the trach.  Our doctor wanted us to start it as soon as possible so that we could start to see some improvement.  If only she were able to just give us the medicine herself...

I found out tonight that it is incredibly expensive (read:  $4,500!!!) and there is no generic. I have a feeling my insurance is going to balk at that one, so I hope Medicaid will pick it up.  Of course, that will require a pre-authorization, and the state offices are apparently closed for the rest of the week...awesome.  We're talking Monday before the request even goes across the desk, and then a few more days for them to hem and haw over it, if history repeats itself.  So "as soon as possible" may be Wednesday, November 30th.

Our doctor won't do anything with the vent weaning--not even turn down the rate--until Abby is done with this new medicine.  Her vent rate has to be at zero (she's at 6 right now) before she can go to MWPH for the final weaning...so stopped singing the "All I want for Christmas is the vent to be gone" song. 

I won't lie--it's a little frustrating.  But I don't want Abby to be set up for failure, so I'm willing to wait until the time is right.  I just hope that time is soon!
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Anonymous said…
I am blown away and concerned of the red tape BUT we have a suggestion Julie. Our daughter in law advised recently of nearly all drug manufacturers having a web site and w/in the site, there is an area which says something like "Can't afford this medicine, click here" and/or get the phone number and call and explain your situation. This has worked for her w/her Crohn's disease over a similiarly expensive course of treatment she must administer every month and recently I applied her advice to an expensive medicine I must take. In each of our cases it has been free and hers ongoing for the rest of her life. Go for it and good luck!
November 23, 2011 at 8:50 AM
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