Friday, March 30, 2018

Bad Clinic Appointment and ICU

My CF likes to keep me on my toes and for no obvious reason my last clinic visit (one week ago) was an utter disaster. Weight was down (just a bit) and my lung function tanked. I had been very short of breath, but I didn't feel sick. I could manage my day to day life and although I was a bit more tired and very breathless I really didn't feel like I had a major exacerbation. And yet my lung function was a pitiful 26%. Yeah, pitiful! A few clinics ago I was on top of the world at 38% so to drop so significantly without having an obvious infection or any kind of virus was pretty shocking. Needless to say, I wasn't going to mess around and I agreed to IVs and a quick stay in ICU for desensitization.

Just like my last desensitization after several days (3 to be exact) of waiting for a bed to open up I was admitted in the evening, but there were no plans to start the process until the next day when the allergists would be in. After a lot of frustrating issues with meds (I really hate being on any floor that isn't a designated CF floor) and a very late start to treatments I was told I was being moved to isolation. When I inquired about isolation I was told something about a potential issue with  a nontuberculosis mycobacterium. Not the news I wanted to hear!! NTM is one of those bugs (like MRSA) that I just never wanted to deal with. (Later I looked up my new cultures which included 4 new bugs, but none of them seemed to be a NTM. I did have a few that were labeled "concern of infection control" so maybe that was the issue. I am still not completely clear except that when my doctor found out I was in isolation he was kinda upset and said it was absurd that they have to put me in a negative pressure room due to any of my bugs).

The next day I had my desensitization in my isolation room and by the time I completed the process (which was basically the same as last time) I was released from isolation and was told I would be moved once again as soon as a bed on the CF floor opened up. After more issues with meds including the nurses losing my Orkambi and the nurses refusing to give me more enzymes because I had my prescribed "3 times a day" dose of enzymes already I was finally moved to the CF floor. As I was being wheeled into my regular floor I felt so much relief to be around people that actually understood CF.

By Saturday afternoon I was released to finish my course of IVs at home. I was relieved to be out of the hospital and back in my own environment, but of course as luck would have it, the drama was just about to begin!

Thursday, March 29, 2018

CF College Scholarships

We all know that CF can come with an insurmountable amount of challenges. Navigating all of those challenges on your own for the first time is no easy feat. Throw college into the mix and it gets even more challenging. Luckily, AbbVie understands that on top of all those challenges money should not be a factor.


If you have CF and are going to be an undergraduate or graduate student (and have CF, of course) for the 2018-2019 academic school year please check out this link below:


https://news.abbvie.com/news/abbvie-is-now-accepting-cf-scholarship-applications-from-students-with-cystic-fibrosis-for-2018-2019-academic-school-year.htm



Sunday, March 18, 2018

Scars

Spring was starting to appear in all the trees and flowers, and skies filled with birds. But the chill of winter was lingering and as the day started to fade to evening, Kaylee and I snuggled close together under her covers to stay warm.

Kaylee held the book in her hands and she sounded out words and read the pages to me. A new skill learned in kindergarten. As the evening grew later she started to get weary, "Can you read now?"

I took the book from her hands and sleepily started reading where she left off. She listened quietly for a few moments when her little pointer finger came up and traced the inner parts of my arm. Interrupting our bedtime story she asked,
"Are these freckles mommy?"
I looked to where her little finger hovered over the marks inside my arm. Old PICC line scars that were long forgotten.
"No, those are all the spots that the doctors used to give mommy medicine when her lungs needed help."
"Oh, like your port?"
"Yes, similar to my port."
A few moments passed as she touched each scar, looking intently at each one.
"Look, these spots look like Orion's belt. Your spots make a constellation! How lucky!"

And just like that my scar covered arms became beautiful skies sparkling with stars and constellations.

Thursday, March 8, 2018

Our Family Grew

There has been a lot of change going on in our household. I hope to post more about those changes soon, but I wanted to start with one that is coming about 2 weeks late!

Kaylee has spent the last few years begging us for a cat. Two weeks ago we finally gave in and Kaylee's dream came true. We knew going into the search for a cat we didn't want a kitten! After we took home a stray (and quickly adopted her out) when Kaylee was one we swore that if we ever got a pet we would opt for one that was out of that adorable, but oh so naughty kitten/puppy stage. We ended up visiting the SPCA and two local pounds before we found our sweet orange and white tabby. He is 2 years old (they think) and is a ball full of energy! Although he was labeled as a stray at the pound we are certain he was someone's pet before he came to us because he knows not to jump on counters and prefers to be in whichever room is the most occupied.

Kaylee spend a long time thinking about names and finally decided she wanted to name him "polka dot" after the markings on his back. The only problem is that Kaylee thinks "polka dot" is said "coca dot" and so he is now affectionately called, "Kokee" (spelling courtesy of Kaylee and her preference of Ks over Cs).

One last random detail. The first time I did may Vest and nebs he totally freaked out and ran to a bedroom to hide. Now two weeks later he is completely used to it and frequently comes over and sits near (or walks on) me while I do my treatments.

Sunday, March 4, 2018

Kaylee Chatter Part 9

I have been so bad at writing down all the funny things Kay says, but here are a few I managed to get on paper.

Kaylee has a boy in her class with Type 1 diabetes. His mom came in to bring awareness to diabetes and explain to the kids what he does to care for his health. A month or so later Kay was asking why people get diabetes. After a quick explanation I then added:
"just like Mason in your class."
Kaylee: "No, Mason doesn't have diabetes he has diabetes awareness!"

After seeing a weathervane on someone's roof,
"Look!! East, South, West, and .....New York!"

"When I grow up I want to have a baby girl. If I have a boys I am going to pass them around to people that want a baby, but don't know how." (yikes!)