We have started a six week course of treatment to fight the mycobacteria abscessus, again. She cultured it at a 3+ level (on a scale of 1-4) so that is pretty significant and her doctor truly believes it is what is causing the drop in lung function. We are using amikacin, azithromycin and imimpenim this time--she has tolerated all three of them very well. Did lung function testing on Monday and we are up to 89%--that is a great improvement from 74% in March, but only half way back to our baseline of 105%--in reality we may not get back to 105% but, I believe we can get close to that by the end of this treatment.
We are also treating the aspergillus that Emily has recently cultured. We are using Voriconazole for it and hopefully it too will be gone!
Amazingly, no other regular bacterias have shown up in her cultures which is a wonderful thing!
For so many years now, I have always felt we were able to keep all the complications of CF at bay, but in the past 6 months, I realize how quickly things can change when someone has CF. I hate that this is going to be my Emily's life...constantly battling the next bacteria that comes her way....while she is definitely a fighter, it makes me sad that she will be fighting always.....well, until that cure is found.
I am going to include some pictures from our hospital stay in this posting. We do a lot of interesting things to stay busy! :)
2 comments:
You all amaze me! Hope you get home soon!!! Much love to you all!!!
HI
My name is Jenna and I came across your site. Emily, You are an amazing, special, and precious gift. You are a courageous, strong, and determined fighter. U are a Brave Warrior, Smilen Champ and an inspirational hero.
I was born with a rare life threatening disease.
www.miraclechamp.webs.com
Post a Comment