Wednesday, April 6, 2011
IVs Round 2
So, Emily finished her last IVs for the mycobacteria, only to go back to UNC to get her picc line out and discover that her PFTs were in the 70s (she has NEVER been this low). So, did cultures which didn't show anything and went back again to find we were still in the 70s. So, she started Pulmozyme for the first time.....returned to Chapel Hill yesterday and we are now up in the 80s, but her normal is over 100! Did a CT scan of her lungs too and sbo the doc wants to put her in the hospital to treat staph and pseudomonas. As you can imagine Emily is quite tired of all of this, but at the same time....we will NOT accept that this is a new normal for her. So we fight, and we fight hard. I think that is the hard thing about CF--you fight hard every day to stay healthy. It takes a resilience and determination beyond just about anything I've ever seen. And one of the hardest things in the midst of this fight is that people don't really "see" CF. So many times I've heard..."she looks good" or "she doesn't look sick"....for the most part, it's on the inside, so no, she won't look sick even when she might be.....and while that is a good thing...it makes it hard for people to realize how hard Emily fights every day. Ten medications each day, 4 to 6 pills each time she wants to eat and and 90 minutes of treatments a day is what it takes to keep her breathing and maintaining her health the way she needs to....she is a fighter and always will be....because we WILL beat CF! And as I end this post to my blog I realize this little excerpt leads right into Great Strides....won't you be a part of Emily's Team? Help her fight the fight of her life? Join our team and help us raise some funds or make a donation if you can't join us! Let's do it! Every penny counts! Click here for Emily's Team! The walk is May 14th!