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.

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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