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!

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!

Clinic Visit

Our clinic visit was yesterday, we were excited to see how high Ty's PFTs (lung function) were. We were also going to get his PICC line removed since the doctor allowed us to keep it for an extra week. Ty did his lung function test and could only get up to 44%.  He struggled with pushing air out and would start coughing pretty quickly. He turned around and looked at me and said he didn't have any air in his chest and that it was hard to breathe.   That hurt.

From that point until the doctor walked in I knew that we were in big trouble. I could hear the doctor talking about Ty in the hallway, saying he had never seen anyone drop half their lung function in just 1 week. He even went and talked to the PFT guy to make sure he had done the test right. Ty was given 4 puffs of Albuterol and the test was repeated. His 1st blow was his best @ 51% and he went downhill from there.

We were immediately admitted into the hospital and a few things were added to our treatment schedule. We're now doing oxygen, prednisone and tobramycin.


Confession time:  I've always seen our CFers with oxygen on but let me tell ya, it takes on a whole new meaning when you see your own son with it. It hurts, it ties my stomach in knots and it gives me a much deeper appreciation for fellow CF families and patients.

Overnight Ty's oxygen level dipped to 88 and 89. With the oxygen he's back up to 97.

That's all for now.