I am the mom of a 10 year old son with Cystic Fibrosis (Ty) and an 11 year old son without CF (Bran). This is my journey as I balance Ty's needs while giving Bran the love and attention he deserves.

Friday, August 13, 2010

My Return To Work

is coming up on Monday!  I've been out with Tyler since June 10.  Wow!  It's been a long and tough summer!  I work in a maximum security (adult male) prison.  My co-workers have blessed our family beyond belief during Ty's recent hospitalizations.  Many of the officers don't even know who I am, yet they gave from their hearts and prayed many prayers for us. I am so grateful to each and every one of my family, friends and co-workers.

Ty's cough seems to be disappearing except for an occasional bout. I have to remind him to cough to keep it loosened up.  He is still able to cough mucus up and out so I am pleased with that. We've gone from doing treatments, IVs and medications nearly 'round the clock to only three times a day. I keep thinking there is more we're supposed to do and have to remind myself that this is it!!

The Prednisone has his face puffy and he's beginning to sneeze and fill a kleenex when he blows his nose. It also has a little blood in it so I'll keep an eye on that. Bran, my non-CFer has also been sneezing so it must be something in the air or "seasonal". It usually takes a few days, but Claritin works wonders for Bran!

Well, that's about all the news that is news for now!  The heat continues this weekend so everyone keep cool!

Saturday, August 7, 2010

Back in Business!

It has taken me a little bit to get my page working again.
But now I'm back in business!

We went back to UNC on Thursday and had Ty's PICC line removed.  His lung function increased from 60 to 68%.  We've stopped all IVs, Zyvox and Septra.

The doctors did a "test" with the Prednisone to see how Ty's lung function would react to 5 days of 50mg tablets. I'm thinking he responded well with an 8 point increase in his FEV1.  So now we're doing 40mg of Prednisone every other day.

We also stopped TOBI and are back on our 28 day off/on schedule.

We're still holding off on the Hypertonic Saline as well.  I think the main goal is to get Ty's lung function back up and then try the Hypertonic to see what it does to him.  It may be that the 7% is too harsh and he needs to bump back down to the 5%.  We'll cross that bridge when we get there.

A big issue for me, this weekend, is spending time with Bran. I promised him that we would go get school supplies, just me and him.  We all know that it is really important to him that he gets "Bran" time since we focus so much attention to Ty's illness.

We signed Bran up for soccer and boy is he excited!! To tell the truth, I'm pretty darn excited about it too!  I love being on the ball field.... I'm not prejudice over the type (football, baseball, softball, basketball, soccer, etc)... I love them all!

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