Wednesday, April 18, 2012

Catching up

Im discovering that I'm more of a blurker than a blogger, plus a facebooker and pinterester. But I'm willing to catch up a little. Health wise, things are not quite so good. I had a clinic appointment a few days before Easter and had been still tired and short of breath. My pfts were down a bit too, so it was decided that the oral antibiotics I'd been taking had not really done the job and I should start IV antibiotics. I asked if I could wait till after Easter and they said yes, if I start on Mon. So they set everything up with home health care. What was really nice is that I didn't have to go back up on Mon and get a picc line put in, since my port has been in for 6 months, just waiting to be used. And I, on the other hand wanted to put it off as long as possible! But now we are bonding. The nurse just had to come access it...which means sticking in a needle with tubing into my port, so I can hook up to the IV medicine. I have the big IV pole for one med and a portable little machine for another. I hook up four times a day. That, along with my regular treatments takes a chunk of my day. I had another clinic appointment yesterday and lungs sounded very wheezy, some crackles and my pfts (lung function) fell even more. Hmmm, I was not happy. I culturing a yeast fungus in my lungs. Often it is aspergillus, this time two other kinds. So they added an anti fungal med plus 60mg prednisone, which I have a love/ hate relationship with. It helps my joints (which always get worse with a lung exacerbation) and usually gives me a little more energy...but I don't sleep. Hate that part.

I have some Easter pictures to post and some flowering spring pics. I couldn't find my camera cord, but did I'll post them soon. Also, Kayden lost both his bottom front teeth a couple of weeks ago. He is barely 5 and 1/2 and just pulled them right out himself when they got a little wiggly. Perrin is almost 4. The babies are growing up...I wish I could slow it down! But life doesn't work like that. Kayden has been so torn about what he wants to do when he's grown up. He said his choices are digging for dinosaurs, hunting alligators or being a train engineer. A couple of days ago he said he thinks he will be a paleontologist. Perrin said he thinks he will be a race car driver. I needed to write this down so we can look back and remember. Fun stuff! I should really carry around a tablet and write down stuff they say, sometimes so funny...but part of it is the WAY they say things.

I checked Facebook a little while ago and found out my uncle from Florida died...he had Parkinson's and a heart condition. I feel sad, but at the same time happy that he is at peace now in Heaven...

P.S. it's after 1:30...Im WIDE awake! Maybe I'll keep reading The Hunger Games triology...halfway through the second book.


Keetha Broyles said...

I never like to hear that you are struggling physically in these ways. I worry 'cause I know a bit about CF.

Those Hunger Games books are really making a big splash these days. Funny since they were written several years ago but just NOW seem to be becoming uber popular.

Anonymous said...

thanks for sharing your days with us...through you, I am learning things......patty in California

Colleen said...

Thanks for the update. Get better, feel better.


Buttercup said...

Stopping by from Blessed Mom's. Keeping you in my prayers.

blessedmoms simple home said...

I hope the antibiotics are starting to kick in and you're feeling better. I'm not much of a blogger lately either! Pinterest is just too fun, and then there's Instagram, where I have lots of fun with photos :)
Not even 2 minutes ago, one of my twins just came in with a tooth he pulled out, and then I read about the same thing here, lol :)

cindy baldwin said...

I HATE prednisone! It makes me into a horrible insomniac. I was on it for about a month last fall and I felt like I didn't sleep a wink. I hope that you feel better soon! Also, I am currently curating a CF Blogroll ( - would you like me to add your blog to the list?