My Life with Cystic Fibrosis, and Now I'm Two!

This is My Hospital. It's called Dartmouth Hitchcock Medical Center, and is located in Lebanon, New Hampshire. They have a Cystic Fibrosis Clinic every month here, and all the children, and young adults come for their check ups. I only come for my clinic visits every three months. That's because I've been doing so well.

The part of the hospital that I go to is called CHaD, which means Children's Hospital at Dartmouth. I have some good friends there, my doctors and nurses are always happy to see me! I like it when they tell me what a big girl I am now, because I FEEL like a big girl now!!

Well, here it is, the first of May, and I seem to have encountered a problem with my lungs.

I had developed a cough and wheezing with a cold that I caught. The doctors had me on three different antibiotics,Amoxicillin, Cephlaxin, and Augmentin, but none of them seemed to help at all. I was also using my nebulizer with the Albuterol, but that only help for a very short time after I used it.
After 65 days, the doctors decided to xray my lungs to see if they could see what the problem was. Well, it seems I now have a staph infection in there! (Staphalacaucus Aurea Bacteria) The xray showed that the lower part of both of my lungs is over inflated. That's due to the infection, and plugs that won't allow the air to move in and out as it's supposed to. Also on the left edge of my right lung, there isn't any air at all!! That's because of the plugs that won't let any air in. These little "plugs" of mucous are deep inside the lungs, and my precussion therapy, nor any of the medications could reach them, so they just stay in one place, causing me to wheeze and cough.

So the Doctors have me on an "intensive three month medication program", to see if we can kill this darn infection, and get me feeling more like myself. Here's what they decided I needed to try: Dicloxacillin - 125mg 3 times a day (antibiotic for the infection) Prednisone - 10 mg 2 times a day (oral steroid for inflammation) Flovent - 110 mcg 2 times a day (inhaled steroid for inflammation)Albuterol 3ml premixed, in nebulizer, as needed (dialation of airways)

This might be a good time to tell you about all the medications that I take every day, to keep me as healthy as possible. Every morning I take my vitamins, called ADEK, 1 ml. It stands for exactly that, vitamins A,D,E and K. Those are the vitamins that my body needs extra of. Then I take even more vitamin E, 1 200IU capsule every morning. Every time I eat, I have to take my enzymes. They are called Pancrease MT4. Right now I take three capsules every time I eat anything. Some days I just seem to take a whole lot of them!! These capsules are to help me digest my food. My pancreas doesn't work as well as it should, and doesn't put out the natural enzymes I need to digest my food properly, so these capsules do the job for me. They only last about half an hour though, that's the reason I have to take them each time I eat, or have a glass of milk, or a candy bar, or whatever.

That's about it for all my daily medicines, and the extras I'm taking right now for this infection. Hoping this infection clears up soon.....All the steroids have made me "puffy". My cheeks and belly are quite puffy right now from the steroids, and my voice is kind of "scratchy" sounding too. That will go away once I'm off the steroids though, they tell me. I've been having a little trouble with my bowels too since I got on all this new medication. I have to "go" an awful lot, and there was a while when my liver wasn't working they way it should. We can tell that because my stools get very light colored, and very loose. The doctor took one dose of my antibiotic away, and it seems to be helping some. It's just kind of frustrating, because just when I didn't need diapers anymore, this comes along, and I've made quite a few messes. Everyone agreed that I could wear a diaper again until this clears up, but I still try to get to my potty if I can!!

This is my friend Madison. She has Cystic Fibrosis too, so we understand each other! Madison and I were the "Poster Girls" for the "Great Strides Walk to Cure Cystic Fibrosis" this year for the Northern New England Chapter. We're both quite proud of that!

On May 20th a whole group of people gathered and "walked" for a cure. Madison and I walked three miles too, along with all those great people who are helping us. Well, I did get a ride on my Daddy's shoulders for part of the way! We raised over $5000 at our walk, and we're all very proud of all the people who helped.

Just another picture of me with my ever present nebulizer.