Wednesday, April 27, 2011

Continuing to Fight M.A.

So we are expected to get out of the hospital in the next day or two.  We are both ready to go home (haven't been there since Apr.7)--Emily misses Scooter terribly as well as her dad, brothers, and friends, of course.
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! :)

Thursday, April 21, 2011

Hospital Stay #3 for 2011

Hopefully this is the last time the words "hospital stay" will be in the title of my postings.  After a few days in Va visiting with cousins and grandparents, we returned to UNC yesterday to do a pH probe for 24 hours to determine if Emily could be having silent aspirations which could be causing some lung function issues. 
After the team talked at length about Emily's cultures-she is still culturing the mycobacterium abscessus and aspergillus--it has been decided that we will treat the m.abscessus again because her right lobe is still filled with secretions and her PFTs remain in the 80s. One of the antibiotics will be changed this time, but it does mean another six weeks of IVs.  Needless to say Emily wasn't thrilled with this news, but hopefully this time will do the trick and we will get her lung function back to where it needs to be.  Emily continues to amaze me every day--she, and all those that deal with CF, have a strength in them that is beyond any strength the rest of us have or ever will have! 
On a happy note we had a great time in VA--picnic, miniature golf, and the roller skating fundraiser at Rollerworks (Hugo's to those of us who grew up in Fauquier County). This event was to raise money for our Great Strides Team for the walk in May.  It was a great night--enjoyed seeing a lot of old friends and family as well!

Monday, April 11, 2011

Hospital Stay #2 for 2011

So, we arrived at UNC Children's Hospital on Friday, April 8. Emily started her day with a bronchoscopy--since nothing had shown up on the cultures and it had been a couple of years since she had a bronchoscopy Dr. wanted to make sure we knew exactly what was going on. The bronch made for a long weekend of fever (and some nausea), but by Sunday evening she was feeling a lot better. The bronch revealed that her lower right lobe is filled with secretions and there seems to be a lot of infection which explains the drop in PFts to the 70s/80s (she is normally well over 100%). We have started on two IV antibiotics--tobramycin and timentin--two new ones we haven't used before. These may change depending on what the cultures reveal tomorrow from the bronchoscopy. We will be staying at least until Friday, maybe longer, depending on all the variables--lung function testing, culture results, etc. Dr. needs her here to do everything we can to get her numbers back to where they were. And we pray that we can make that happen. Emily is in good spirits--she always seems to crack a joke or give one of her infectious smiles...even when she is feeling bad--so many of the kids here seem to be that way.....guess we could all take some life lessons from them! :)

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 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!