Friday, December 01, 2006

I Know Why the Caged Bird Sings

Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away all the same, knowing she has wings.

--Victor Hugo

At the moment, I'm in the hospital. I've been here since the day before Thanksgiving. So far progress is a little slow, but I'm confident that with the continuing doses of IV medications, and some forced bed rest, I'll rebound soon. I'm certainly not going to push it though. Since this is my 3rd hospitalization since the end of June, I'm determined to let my body rest as much as I can.

My pulmonary function tests have yet to improve enough to suit me (and the doctor). The other thing we're working on is getting some of the nasty toxic antibiotic flushed out of my system. My kidneys got a little bit spooked with the colistin, so we discontinued that med for awhile. Now I'm drinking water like it's going out of style. Then of course there's the added bonus of all the exercise I'm getting from taking so many trips to the bathroom!

Most of the nurses have been okay. It's been a typical mix of people who have at least a working knowledge of CF and those who are painfully ignorant of it. Some days I've been just too tired to try to educate them on the specifics. One of the most difficult things is that some of them just can't grasp the concept of pancreatic enzymes. This has been the case almost every time I've been an in-patient. The nurse will come by at 7am, noon and 6pm (the "typical" mealtimes) wanting to give me some Creon. I try explaining that the medication is not time bound, but has to be taken whenever I eat anything at all. In order to avoid frustration and conflict, I bring my own bottle of Creon and keep it bedside.

For the most part, my stay has been uneventful. There was an issue with my portacath, but that was resolved eventually. For as old as that sucker is, I'm really thankful that it works so well. I can't imagine ever going back to PICC lines or peripheral IVs for long term. Ick.

Even though I was getting a bit more energy back yesterday and today, I'm still not quite ready to fly off this perch on which I'm resting. When the time is right to wing my way back home and work, I'll know.

Current mood: optimistic
Health-O-Meter: 40% of baseline
Current snack: whole milk and chocolate chip cookies
Emotional Weather: scattered clouds, mostly clear

Please know that you are in our thoughts and prayers. Sarah was just discharged yesterday. I have updated my blog if you want all the gory details... Although, you may want to skip the medical details and just read about the wonderful spiritual experience I had in the midst. You have no idea what you mean to us. You are our personal symbol of hope amidst this disease that ravages.

You may also be interested to know that Dan is doing a report on cystic fibrosis for school. She is citing your blog as a resource. I hope that helps to make up for that "C".

We are sending love and envisioning light to you and your family. Special prayers to Brad.

Love and Light,
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