Hi friends, thanks so much for all of your support on my CF Clinic visit post and on Facebook! It means a lot to me :) In the meantime I'm just exhausted with all the balls I'm juggling at the moment. Part of it is all the stuff going on with Mr. Charlie, part of it is my new workout schedule (530am- fucking YAWN), part of it is working full time and negotiating a job move, part of it is a graduate class I'm taking, part of it is finishing up my book (yay!), part of it is meal planning/grocery shopping/laundry/bill paying and part of it is stupid daylight savings time. Just an awful lot of stuff going on at the moment, but I did get a chance to work on a scrapbooking layout last night for the first time in a few weeks and that was fun! It'll be up on the Noel Mignon blog Wednesday so go check it out, mkay?
My point was actually to do a quick Charlie update and not have a big bitch fest!! LOL, I really love being busy so having a lot of balls in the air is a good thing for me but every so often it becomes the perfect storm and I get tired, ya know?
I last updated briefly yesterday. Basically Charlie's symptoms have been this: 2 weeks ago he had a fever of 103, which came down to 100, and has been hovering between 99-100 since then. He's been lethargic, no appetite, complaining of tummy aches, and he lost 4 lbs as of last Tuesday. Last Tuesday he went to the CF Clinic, they figured out he had ear infections and prescribed Bactrim. A couple days after starting Bactrim he developed a REALLY bad cough. Worst I've heard him have EVER- both frequency and junkiness. So we started sick plan (this means treatments go from 2x per day to 4x per day) and kept him on the Bactrim per the doctors recommendation. His cough/fever/fatigue lasted all through the weekend and he lost yet another hard earned pound so today we called it in.
Initially they prescribed an oral steroid to deal with the inflammation (Charlie has CF related asthma) and to continue with the Bactrim. This made no sense to me as the Bactrim obviously wasn't working as he was on Day 6 and kept getting worse. So they asked us to come in for a visit. I had 1 hour to get to a doctors appointment that was 1 hour away so we hustled our asses out of our pajamas and headed to the CF Clinic.
SN: I didn't get poked by the mysterious tree branch this time but Charlie did tell me to stop singing "Let It Go" at the top of my lungs which I thought was kind of rude as he wasn't contributing much to our hour long car ride himself, unless you count the coughing. "Frozen" is more fun than coughing and boogers any day.
To make a long story short- Charlie had a bunch of freak outs in the exam room but our Dr. did agree that we could pull out the big guns since he's been unwell for so long. So we got our prescription for levoquinone and headed the hour back to the pharmacy to pick it up. If he doesn't show improvement by Friday they'll do a 2 week course of IV antibiotics, but the combination of levoquin and prednisone worked like a charm back in November so hopefully it'll work just as well this time! I have high hopes it will so I'm not super worried but I still don't appreciate the way CF forces me to be patient when I don't want to be :p Although I will say I am NOT looking forward to Charlie being back on steroids. Ugh, the tantrums.
So now he's doing a crap ton of nebulizer treatments: pulmicort (inhaled steroid for the asthma), albuterol puffer, pulmozyme (DNAse to break up the DNA from dead neutrophils in his mucus), and TOBI (inhaled antibiotic) for a finally tally of 7 nebulizers per day plus 4x 20 min Vest treatments. The amount of nebulizer parts this accumulates daily is unreal.
And after all that fun, this is his nightly medicine line up (is it wrong that my first thought was "eh, could be worse"). A can of Pediasure 1.5, digestive enzymes, appetite stimulant, reflux medication, two different types of vitamins, steroids, and two different antibiotics. It's amazing to see Charlie take all of these medications, he just does it. No muss no fuss, just sucks 'em down. He's so awesome.
That's where we're at for now! Like I mentioned, I think he'll start feeling better soon with these new meds but I'll keep you guys posted :) In the meantime I'll leave you with this meme which made me giggle. I feel kind of weird saying "giggle" because I feel like I'm too old. So I dunno. This meme made me guffaw? Oh god, LAUGH. This made me LAUGH. I forgot the word laugh. Man I need to get some sleep.