Breathing Deeply: My Life With Cystic Fibrosis

Just because I'm in the hospital doesn't mean I can't have my very own little celebration for the 4th. Tonight I ordered cheeseburgers and ice cream for dinner, topped it off with a cold ginger ale and half a pint of milk. Mmmmm, tasty. I don't know if I'll be able to see any good fireworks from my window, but that's okay. I usually associate this holiday with fun family time, and since I got some of that today with Brad and my Dad's visit I'm a happy camper.

I really like when my dad comes to visit. I guess I'll always be daddy's girl. Actually, it's nice to have a mature, adult relationship with each of my parents. My dad always has a way of imparting some "life knowledge" when we have a conversation. My mom is the care taking type, always bringing or sending along a "care package" of sorts when I'm in the hospital. Tonight that included a fresh nightie and some lipstick to help me feel more like a girl. Brad came this afternoon as well as is typical for him. He helped Dad with some computer stuff and then after Dad left he spent a few hours with me just hanging out talking and sharing a snack.

The weird part of my day was when my port-a-cath seemingly sprung a leak. It happened prior to my afternoon dose of CPT (chest physiotherapy.) I looked down to move my tubes out of the way so that the respiratory technician could pound on my back and I noticed quite a pool of blood under the dressing. Yikes! We don't know what started it off, but the blood was coming from somewhere. It wasn't getting into the line itself, so all we really needed was a dressing change and not a whole new needle. What a freak thing to happen!

This afternoon I managed to get a nice nap. It was the sort where you're sleeping rather lightly but still are able to awake feeling rested. It was just a pinch warm in my room which is probably what facilitated such an event. Of course, the pain medication I'm on makes me a bit drowsy as well. I'm thankful for naps. They help make the time pass more quickly. The days still stretch a bit too long and the nights are too, but for the most part I'm doing fine and have had a decent experience so far.

I'm looking forward to Tuesday which is when we will repeat my pulmonary function tests (aka PFTs) to see how well I'm progressing. All the docs seem to think we're working more on an infection now and not so much waiting for my rib cage to heal. That may be what brought all this on, but I no longer think it's the root cause of what we're fighting against. Please continue to pray that I can regain lung function and that I'll be able to go for longer walks with less of a need for supplemental oxygen.