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!

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! :)

Emily Update

Well, I talked with Emily's doctor yesterday. Since she has been on oral antibiotics since early November, and she is still not "clear", and we have had a slow decline in PFTs and she has lost some weight . . . we are going to do a bronchoscopy. It has been two years since Emily has had one, so the doctor thinks this may help us find something we are missing. We may start IVs at that time as well, depending on what they find with the bronchoscopy. She will probably go in on this Friday, but we will finalize the plans on Monday. I have already talked with Emily about this as she likes to have a full grasp of things that are going to happen to her (after all, this is the girl who since the age of 4 has refused to look away when they draw blood). I am apprehensive as we have not had to go down this road in so long, but I try not to show it in front of her. It will be a long week back to school with all of this looming ahead, but I know in my heart that we need to do something to get her back to her baseline. I will follow up from there . . .in the meantime please pray.

A Bit Delayed

Had to laugh when I logged on here. Okay, was it really April when I started this???? Well to make a long story short, I was promoted to principal shortly after that and well let's just say life has been very busy.
So, Emily's PFTs have slowly declined from 126% in April to 105% in December. Now, don't get me wrong, I know that 105% is really good, I just have this mindset that if we can achieve 126%, then that is where we need to stay. In my heart I know that when a "cure" comes along it will make a difference in Emily's life, but it will not undo any damage that has already been done.
So, with today's report it wasn't the best, or the worst. We have done 3 weeks of bactrim--two week off--got sick again, 3 weeks of clindamycin, and still not where she typically is after a couple of rounds of antibiotics. So, we are going to do two more weeks of clindamycin and see what happens from there. Emily's weight has dropped to the 35%ile--so we are starting Scandishakes to get her some extra calories.
It was a long day up to UNC, as always, but well worth the drive for the care Emily receives. Hopefully we can get her back to where she can be in PFTs and weight in the next few weeks . . .

Simply Amazing

In my original post yesterday, I said I was going to recap Emily's diagnosis, however, Emily had her three month check up today and I couldn't wait to post the results.
This was the most amazing visit! Emily's PFTs were 126%! The average PFTs for a seven year old with CF is 95%! So, you can understand how exciting this news was for us! It was her best EVER! Also, for the first time EVER, Emily moved to the Outstanding category in terms of her weight! Nurse Sheree told us it was like getting an A+ on an AP English test. I couldn't agree more! Now, I pray and pray and pray that we keep her here! While weight and PFTs were phenomenal we did have a lengthy conversation about the Ph probe test results from two weeks ago. The data showed Emily is having many episodes of reflux, even with 30mg of Prevacid twice a day. Dr. Davis is consulting with the GI specialist and will let me know on Monday what we will do to address this!
'Til next time . . . .
Cheryl