Final Bronchoscopy Results and Great Strides Kick Off Meeting

Well, after allowing Emily's cultures to grow out from the bronchoscopy for several weeks I finally had confirmation that she grew no bacteria! This is amazing news, at least we know there is not a terrible bacteria that is responsible for her slight decline in lung function. So now when we go back to the dr. next month we will discuss what could be causing this . . . like I have said previously her current function is not bad, it is just not as high as we have had it in the past.
On Thursday we had our kick off meeting for team captains for our Great Strides walk on May 30th. There were several new faces/teams--Donnie's high school National Honor Society is going to have a team, there was a mom of a one year old who was just diagnosed, and a 19 year old girl with CF who is walking in Great Strides for the first time! It was an exciting meeting to know we are going to grow our walk this year-it is only the second year we will have it in Monroe, NC (Union County) and I am so excited about the prospects!

Still Waiting

As of Thursday, nothing has grown out on Emily's cultures. The nurse did say that it can take a couple more weeks for some organisms to grow out. I know this is so because last April Emily had an excellent report and then two weeks later they call back and tell me she has ORSA--it took nearly three weeks for it to show up. So, for now we wait and wonder. A part of me wishes she would culture something so we could treat it, especially since we are baffled by her decline in PFTs--at least if she cultured something there would be an explanation for this.
I have been sick most of the weekend--I get these stomach attacks that have all the symptoms of gall bladder disease--and it takes me a few days to get over it.
Douglas won another basketball game yesterday. He had eight points himself--I didn't get to see it, but I got a nice recap from the boys.
Well, need to go work on tax stuff, so have to go for now!

Some Good News

Well, Emily had her bronchoscopy yesterday. The doctor reported that her lungs actually looked really good--not as much secretions as they thought there would be. So, we did not do an admit and IVs at this time. We will wait for the culture from the bronchoscopy to find out what she may be growing down there and then make plans for our next steps from there. We went ahead and stayed the night up there with my folks (they already had a room booked)--that way we had some time to rest before we traveled back home. I got home today in time to see Douglas' basketball game. He had a great game with many assists and his team won 42 to 29--they lost to this team the last time they played in a double overtime so today's was an exciting game!
Will post again when we get results!
Have a wonderful rest of the weekend.

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.

New Pictures

Today I picked up the pictures of the kids. We had them done a couple of weeks ago. It has been 4 years since I had their pics done all together. I have posted a few of my favorites below.

Memories

Well, I was able to upload my one true media video of Emily to YouTube. You can access it on my page. As I watched it I took a little trip down memory lane, so to speak. Most of the pics and video clips are from Emily's first stay in the hospital at UNC when she was diagnosed. I remember how little I knew of CF then, and how scared I was. Those three weeks in the hospital were the longest three weeks of my life as I educated myself about cystic fibrosis and as I learned how I had to care for her. During this time one amazing story comes to mind. . . . a week before we headed off to the hospital we visited the local library. Emily was insistent on checking out a book called Philadelphia Chicken by Sandra Boynton. Okay actually she threw a fit about getting it. It is basically a book of songs with the accompanying CD. I was reluctant to check it out as we tend to misplace CDs at times. Emily pleaded and pleaded and finally I gave in. We started listening to it in the van--it had some catchy tunes--and basically she loved it. We all did and it actually created some happy fun-loving times while traveling down the road singing at the top of our lungs during this very emotional time. When we went to the hospital a week later of course the book and CD had to come with us (never mind we would owe a late fee by the time we got back). About a week after we had been at the hospital I was perusing some materials the nurse had given me from the CF Foundation. One item was a newsletter--a particular article caught my eye . . . I quickly discovered that Sandra Boynton was donating proceeds from the Philadelphia Chicken book and CD to the CF Foundation. I immediately began crying as I thought back to that day in the library when Emily insisted we check out the book--it was as if she knew she needed this book to help her (and all of us actually) get through the coming weeks--a time when she had just been diagnosed. This book had carried us through a very hard time and it was obviously meant to be! I found the author's website and emailed her my amazing story of how Emily just knew she had to have this book and all of the joy and comfort it brought her during the time fo her diagnosis and first hospitalization.
Here's a link to the book if you are interested. It sure can make you laugh, smile, and sing on the worst of days. http://www.amazon.com/Philadelphia-Chickens/dp/B0001ADB6Y
You can listen to some of the samples too!

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 . . .