So here, it is the last day of January 2011 (actually it is February 1st now). Here we are back at the Hill. The ol' m.abscessus has reared its head again, and Emily has officially had her 6th PICC line placed. She did well today....got a little upset with the IV to sedate to place the PICC, but over all, she showed, once again, what a tough and brave girl she is. (Mom won't lie though....my heart hurts every time I see her get upset with all of this!) So, there's a national shortage with the amikacin right now, so we are trying a new drug, tigecycline (along with imipenem and clarythramycin). Hoping this does the trick.....it's a six week battle to hopefully get rid of it for good. So many unknowns still with this bacterium.
I hope and pray this is the last PICC she has to do for a long time....three times in a year is a bit much, although I know many CFers endure much worse, so I guess we should just thank our lucky stars that we have only had 6 PICC lines. I guess in the big scheme of things, not so bad...that's an average of once a year since she was diagnosed six years ago. The hard thing about the m.abscessus is that it is a six week treatment, so it's double the time for most other bacteria we have treated.
Em's spirits are good. She loves to joke with and talk to the nurses and other staff. I love her spirit! Even when she knows her favorite things like playing soccer and horseback riding are on hold, she doesn't let it get her down! I love this girl!
Saturday, January 8, 2011
So, we have made it through the holidays and stayed fairly healthy, until recently. Emily had her check up on December 7 and we recently found out the dreaded mycobacteria abscessus is back! Why oh, why? We are waiting for sensitivity testing right now--to find out which drugs will be an option to treat this once again. It is a hard regimen with three antibiotics, usually a couple IV and one oral...and the last time we did this for six weeks. Em was actually hooked up to IVs for 4 1/2 hours a day! So, for now we wait--Em's actually feeling bad this weekend, been real congested and running a fever. Calling for snow on Monday, so looks like we might have a long weekend for her to rest up.