Screaming Banshee

Screaming Banshee
Make Sure You Laugh When There Are Days Like This!!!

Monday, November 1, 2010

When did Cystic Fibrosis get here?

I know Ginny was diagnosed when she was 3 months old. It's a genetic disease, thus determined from conception. Before we knew it was CF, there were many tests done while in the hospital to figure out why she wasn't gaining weight, had anemia, vitamin E deficiency, etc. Once diagnosed and on the correct meds, things improved and life settled in.

Over the years, Ginny has had colds, coughs, strep, ear infections, etc. Those have been easily resolved with anti-biotics. Her lung function (PFTs) has always been in the 107% - 118% - ideally, you want your lungs to function at 100% so she's been in GREAT shape!

Ginny's weight was a struggle until they introduced us to "the hungry pill" (don't remember the medical name). The goal was to have her BMI above the 50th percentile. She was usually no higher than the 20th until that medication. They had started hinting at a G-tube, but we told them to come up with something else. They did. Within 4 months of being on "the hungry pill", her BMI% shot from 21% to 49%.

Don't get me wrong.....we've had our stressors and struggles with all of the appts, meds issues, germ warfare, insurance, trying to gain weight, trying to kick colds/coughs, etc. But, after the initial difficulties, we settled into daily life with CF......

...... That is, until her PFTs dropped to 89%....... we upped her meds, increased nebs, added Cipro and were to return in 1 month to check again............ they dropped to 81%...... *THUD*.....

She was admitted to the hospital -
She was in for 1 week of IV anti-biotics, respiratory therapy 4x/day, Chest PT 3x/day, and food galore. Just as she was finishing breakfast, snack would arrive - when that was done, lunch was delivered and all meals/snacks were wrapped around all of the other therapies. She has come home with a PICC line so she can continue the IV anti-biotics. There are 4 per day and we had to really schedule things carefully to fit them in with the proper spacing between - not to mention that thing called school, maybe even life.


Guess I can no longer live in my happy, little denial about CF. It's always been there, but now it's sitting at the table.

1 comment:

Anonymous said...

Helen, I don't know if you remember me, but my name is Nels Holmgren and I lived in Sweden while you guys were there. Charlie (no doubt Charles now...) was one of my best friends. Sitting on a very dull conference call today, I started plugging in names and found your blog. Please give everyone my best!

nholmgren@utah.gov