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Thursday, August 19, 2010


I thought I’d update a bit more on our discharge. Ben’s PICC line was pulled pretty easily without tears. They just had to hold his arm still then gently pull the catheter out. Look like he’ll have a bit of a scar just like the spot on his ankle from his first line. He did have some skin irritation in the area where the tape was. He still does have some sensitivity to tape.

We are going home on Hyper Sal and TOBI. Our prescription hasn’t arrived so B’s had a few days off of HS and his cough seems to be subsiding. If his cough flares back up when we start HS we’ll talk about switching him to Pulmozyme. We will be doing 25 days of TOBI then culturing him on the 17th. Ben will need to have 3 pseudo free cultures before we are declared pseudomonas free. We will be doing on/off 28-day cycles of TOBI until then. Keep your fingers crossed for good news. If Ben can’t get rid of the pseudo we will be talking about starting a new antibiotic called Cayston. For some reason I can’t create a hyperlink to Caystons website, so you can read about it here: This is a couple months away if at all so we aren’t putting too much thought into it.

Ben is having some trouble getting back into our routine. For two weeks, he got to eat what he wanted, got his paci 24/7, watched endless amounts of movies, had new toys given to him daily and didn’t hear the word “no”. So it’s been a bit of an adjustment, getting back to our normal routine. Our CF team warned us that it may be hard for him but just to give it time. I hate having to discipline him so much, he’s usually such a good boy. It’ll just take some time and patience on everyone’s part. When I took him to Gymboree yesterday, he ran all over the place. He wanted nothing to do with any organized activities (parachute, song time) but I figure it’s his time to do what he wants. I’m not going to force him to sing songs with me. Anyways, he has 2 weeks of pent up energy to get out. We’ll be keeping our fingers crossed that things get easier for him in the next couple days.

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