Pulmozyme? clinic visit

[Guest guest]

Hi all, We had clinic today, well it was early, has been sick and we

were able to get him in a week early, a lot has happened today, first

is in 108% of weight and height, he weighed in at 45 pounds and he is 3' 7.86 "

in height, unfortunately right before he got sick he weighed in at almost a

whopping 49 pounds, but this cough has taken a lot out of him. He is on bactrim

for the cough, so hopefully he will start feeling better. OK his vest has

been increased to three times a day and with each of the vest sessions he will

do

albuteral,so he will do this schedule from now on : (morning- albuteral-vest)

(afternoon-abuteral-pulmozyme- vest) and then (evening albuteral-vest). so we

are going to be busy,thats not even including his other meds.Pulmozyme is new

to us, So I am learning all about it, I can't believe it cost over 1400.

dollars a month. 's insurance should take care of it, I have a few

questions about how does one do treatments on the weekends or when your out a

lot? do

they have a nebulizer that can be carried in the car with all the adaptations?

Its funny we went from doing nothing except enzymes to all of this, Hey guess

what, did his first pfts today, his doctors actually said that it was

great for his first time, he even got a certificate for it. I am a little

overwhelmed but that's because I haven't put it down on the schedule, I feel

better when I can track it all on paper charts. so overall is doing

great.

I was concerned about the pulmozyme, I assumed at first that He must be going

to downhill because he was placed on it, but they reassured me that it was

preventive maintenance, so I am all for that. So what kind of experiences do you

all have with pulmozyme?Ok I have rambled on enough, talk to you all later.

, mommy of 5 years old w/cf/adhd and 2 years old no cf