CF Day

Today was CF day for Bethany. We spent a large portion of our day at the clinic for her three month check up. Her numbers were down a little from her last visit -- about 3%. Since her numbers were also down a little on her last visit, her doctor is a little concerned that she is possibly growing something. She usually doesn't grow much -- just staph and last time H. parainfluenzae. So they cultured her and the results will be back next week. I am hoping that she is not growing pseudomonas. 

One good thing was that she had actually gained weight. I have worked so hard to get her to eat lately. She is almost never hungry and when she does eat it is always so little. Gaining weight can be a problem for kids with CF. But, she had gained almost three pounds. I was really surprised. 

Her chest x-ray looked fine and we have to wait for the results of her blood work. Her doctor decided that since she was blowing lower numbers this time he would start her on ACBT (Active Cycle Breathing Technique) and Huff Cough. So he went over that with us and we have to do this each day as she does her vest treatment -- start the vest and then stop after five minutes to do ACBT and Huff Cough and then start the vest back up for five more minutes and then stop and do ACBT and Huff Cough again and then continue to do this for the entire treatment. Getting her to do it properly is a little tricky right now, but I'm sure she will get it down after a week or so. It definitely does make her vest treatments longer and more work, but hopefully it will help her lung function. 

So, she now gets five nebulizer treatments each day and uses the vest three times a day -- up from two times a day. She gets Pulmozyme once a day, Albuterol two times a day, and HyperSal 7% two times a day. Hopefully the extra CPT (chest Physiotherapy) will help when she goes back to the clinic next month and they check her numbers again. I also pray that when we get the results of her culture she will not be growing pseudomonas.