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Tuesday, November 5, 2013

Clinic Update & Sleepy boys

Yesterday I had my follow up appointment after 2 weeks of IV antibiotics. It did not go at all how I had envisioned it. I saw myself going in, blowing an FEV1 of at least 62% and getting my PICC line pulled. I would leave with a smile on my face, go home and take a long, hot shower! (With a PICC line you have to wrap your arm and hold it out of the water when showering. Makes it hard to enjoy a shower.) Then get back to work at getting my PFT's into the 70's! I was almost there with a 66% 6 months ago.

When I went in, I kind of had a feeling it wasn't going to go the way I had hoped. I feel slightly better, and my cough has lessened. Usually I feel like a new man after 2 weeks of IV's. My cough hadn't changed either. It is still a harsh, dry sounding cough and it's hard to cough sputum up. The only way to describe it is that my lungs feel swollen, or my airways are tighter than they've ever been. So, since I wasn't feeling like a new man, my cough was still harsh and dry, and I wasn't able to bring up sputum easy, I figured something was still going on and I'd keep my PICC.

I blew a 53% FEV1. That's down 3% from before I went in 2 weeks ago! I was shocked to see that I had dropped. For a brief second my heart dropped. I've been working hard the last 2 weeks. As soon as I saw it, immediately my mind starts going to things I could have done better. I blew as hard as ever trying to get that FEV1 a little higher each time. It actually dropped with each attempt. I've been doing these long enough to know that usually my 2nd, 3rd and sometimes 4th attempts are my best. Another indication to me something else must be going on.

On a good note, my weight is up to 160! Maybe my FEV1 dropped from the addition of 5 pounds of adipose tissue. :)

Sooo, after discussing with my CF team how I feel and my symptoms not changing, they came up with a plan of attack. My physician thinks maybe I'm having an inflammatory response (swelling) in my lungs. Here's the gameplan:

1. Add oral Cipro to the mix for 2 weeks
2. Continue IV Meropenum through Friday
3. Add prednisone (if the blood work does show I'm having an inflammatory response, he would treat it with prednisone. So he wants me to start it now prophylactically.)
4. PFT's in a week to see if the prednisone had any effect. Follow up with the blood work results and go from there.

Am I concerned? Of course I am. Am I worried? Yes, slightly. Scared? Maybe a little. I'm not okay with that kind of decline and am not going to accept it as "the disease running it's course." I'm glad that my team is not accepting that as the case either. My physician told me not to worry that they were going to get me better. I guess he could tell I had a million things running through my mind.

Oddly enough though, I have quite a bit of peace about it all. Jeremiah 29:11 " 'For I know the plans I have for you,' says the Lord. 'They are plans for good and not for disaster, to give you a future and a hope.' "

To brighten the day, Jace decided to have his first real belly laugh. I had just finished his bath and was drying him off and putting lotion and powder on him. Monica was feeding Jeriah in the living room. The Chase credit card commercial came on with the Katy Perry song "Roar." I randomly started singing it to Jace being silly and he thought it was hilarious!!! Every time I'd start to sing, he'd burst out laughing before I could get a couple words out. He just kept laughing and laughing and laughing! It was awesome!!! It was a textbook belly laugh, lol! Now we'll be trying to get it on video to share with you guys!

I'll leave you with a couple videos of our boys falling asleep after being tuckered out from a hard day of being a baby!

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