*Breathe*

"Breathe" is the title of my *new* weekly post for what is going on with Brett medically and his life with Cystic Fibrosis. I have decided to post something either about Brett's health or about something CF related every week.

It will usually be posted on Monday. If it's not on Monday, it will be on Tuesday that week. They'll be labeled so you'll be able to find them easily if you miss one or two. And as usual, if you have a question, please comment on the post and I will answer it!

Brett in the pool with Daddy

I was having a hard time knowing how much or how often to talk about Brett's health and CF, because it's important and you want to know, but I also didn't want it to be the focus of this blog, the same way it is not the focus of our family. Rob suggested I update you on Brett once a week, and if there isn't much to tell I'll do a feature on something CF related. That will give you a Monday update, a Wordless Wednesday pic, and another couple of family-related posts throughout the week. Hope you enjoy it - here goes.

Although I mentioned a few changes we made to Brett's regimen during his last doctor's appointment, I wanted to update you on his status in general. Since Brett is now free of his Broviac-Hickman catheter (or any other sort of central catheter), he can now have regular baths and go swimming in a pool. We are so relieved!! He does not like bathtime, but it sure is easier for us to clean his body. The pool, as you can see in the photo, he does like!

Brett getting his Pulmozyme treatment

Current Medications and Supplements

Here is a photo of all the medications and supplements that Brett requires right now. YES, it feels like our kitchen is a pharmacy. Especially with Mark's meds too. Mark actually uses the exact same medication with the exact same inhaler and same size mask- so it's important to be organized and keep everything separate so that Brett doesn't get any of Mark's lung bacteria. And YES, the folks at Wake Forest Drug love us as much as we love them! We feel as though Scott and Debbie are a crucial part of Brett's care team. And since last April, they've been getting a LOT more business from us LOL!

Below is the laminated schedule I keep on the front of the refrigerator to keep us all on track with what he needs throughout the day. Whoever administers the meds or the treatments just marks it off with a dry-erase pen. At the end of the day I wipe it clean and start all over the next day. Whenever his regimen changes, I just change the document and print out/laminate a new one. This is also helpful to take whenever he is admitted to the hospital. The nurses are very good about keeping to it so that he doesn't get off schedule during his stay.

Daily Medication Regimen

In addition to this daily routine, Brett has a physical therapist come to the house once a week, a feeding therapist once a week, and a developmental therapist either once a week or every other week. That's 2-3 hour long appointments each week. Whenever he has a central line, the nurse also comes out once a week. Thank goodness they come to the house and I don't have to get him ready and go out. He gets these therapies from companies who work with the Raleigh CDSA. He's been getting physical therapy since first got home from the hospital in August 2009. He has come a long way - he's actually crawling now! More on that next week.

Current Meds:

Creon (digestive enzyme)

Albuterol (bronchidialator)

Flovent (inhaled steroid)

Baclofen (muscle relaxer)

Pumozyme (mucus thinner)

Ursodiol (helps control bilirubin level & liver enzymes)

Prilosec (prevents reflux & helps enzymes work better)

Current Dietary Supplements:

CF Vitamin Complex (A, D, E & K)

Jarro-Dophilus powder (probiotic)

Instant Mashed Potatoes (Stool Thickener)

Zinc Sulfate (to increase enzyme performance, for growth & fighting off infections)

MCT Oil (Fat, fat, fat!!!)

Table Salt (to make up for excessive salt loss)

Total hours spent daily managing CF:

about 3 hours

This is probably the least amount of hours it will ever be, so it's good right now! Relative to how much more intense the regimen has been at other times and what it could be in the future, it's not too bad. I choose the schedule for the medications and the times aren't as strict as IV antibiotic times, so we don't have to break ourselves to stay on the schedule to the half hour and don't have to get up in the middle of the night several times to give meds. With that said, it is still of utmost importance that all this gets done and gets done throughout the day. We can't do it all in the morning and have it all done for the day, and we can't save it all until evening, either. And we *never* skip the treatments. CF never takes a day off, so we can't either!!