PFT Results

My PFT results did not really change from my last one I had almost a year ago. They still noted some mild restriction and bronchodilator responsiveness. For the infant PFT they figure a FEV .5 not a FEV 1 and that was 82%. My total lung capacity was 73%. This was up 2% from my last test.

The chloral hydrate really had some side effects this time around. I vomited when I was forced to wake up before going home. The nurse had to do all her vital checks and make sure I could drink something. I was not fond of this wake up process and cried. Mom said I was equivalent to hanging out with a drunk, determined 2 year old when we got home. I could not stand well and kept falling down. I was determined to play with my cars. I did not want to sit on the couch. After falling a few times Mom moved me up to my room so I could be cushioned by the carpet. Eventually she tried to put me to bed and I just cried. Me crying is not a normal occurrence because I love to go to bed. Mom climbed into my crib in hopes this would get me to sleep. I thought it was so fun I jumped on her like a horse and kept laughing and falling back to hit my head on my crib rails. Finally, she left my tired, silly self to go to sleep. I had been up since 4am. I slept for the PFT that was about 1 hour and I slept for maybe 20-30 minutes on the way home. I was so exhausted and loopy by the time I finally took a nap.

The doctor is not going to change my medication routine. I will just continue my daily list as usual. I am not a big fan of doing the vest lately, but Mom makes me compliant. I get to watch anything I chose. I am a big fan of watching Thomas the Train these days. I am pretty sure I have seen all the episodes On Demand about 25 times.

I love going for bike rides with Mom. I ride in the bike trailer on the back and just play with my cars and eat snacks.

Yesterday I had my last seasonal dose of Synagis to protect me against RSV. Two pokes, one in each thigh. I have two more doctors appointments coming up. The short gut doctor in May and Dr. Nasr in the beginning of June. Once those appointments are over I am looking forward to an appointment free summer of fun!

The CF great Strides walk is less than a month away! Please sign up to walk and donate what you can to help me in my fight against CF. We are losing precious lives to CF daily and there is no better time than now to find a cure. You can donate by clicking on the Great Strides link on the right hand side of my blog.

Please send positive thoughts and prayers to 7 year old Conner and his family. Conner is a CF Warrior who is at war with his CF. You can read about Conner on his blog: http://www.notsobrightandshiny.blogspot.com

Together we can fight CF!

Ben

Swallowing my enzymes like an adult!

Well I am now swallowing my 5 Creon 6 enzymes like a super big boy. No more sprinkling of the beads on the applesauce. This will help Mom and Dad while we are on the go...a few less things to pack. No more spoons and jars of applesauce. I am still amazing those parents of mine every day.

April 13th I will have my second Pulmonary Function Test (PFT). It will be just like the first one I had. Wish me luck!

I am obsessed with trains lately. We live a block from the train tracks so I hear them go by all day. Daily, I ask Mom and Dad, with my hands up in question, "choo"?

Choo Choo,

Ben