Wednesday, October 17, 2007

Hooray for drugs!

CCS approved Froggy's inhaled antibiotic, and they're covering it 100%.

Froggy's Grandma picked it up from the pharmacy downtown and brought it all the way to us tonight. So tomorrow, our anti-pseudomonas regime begins!


Thank you everyone for your kind words and support. And thank you Beverly for suggesting the CF study. I guess the first two months are covered by CCS, but after that, we may need to join a study to get the next six months supply.

I can't tell you how thrilled I am that it took only a few days, rather than weeks. Nothing is ever easy, so this feels a bit surreal. I think we should send flowers to our caseworker, or perhaps a case of wine, so that in the future she'll rubber stamp that APPROVAL with every new medication.

FD watched Froggy tonight, so I could catch up with my good friend "Gorgeous Hair". We went out for pasta, wine and bread (does it get any better than that?) and discussed the sad state of politics, which was far more uplifting than the sad state of our health care system. And somehow, with carbs and wine, I feel like we'll get through this. We'll eradicate pseudomonas and eventually CF. Someday!

9 comments:

Beverly said...

Hooray! I hope Froggy adapts well to the mask and all. Ella cried the first time as did her parents. After that, she was fine with it.

Out, out d*mned pseudomonas!

Casey said...

YAY!!!!!! I am so, so happy for you!!!!! What a relief - you have been on my mind constantly the past few days.

Rachael said...

Had a great time. Here's to children services. I love you.

Froggymama said...

Beverly, does Ella do albuterol and pulmozyme treatments too? I'm wondering because I can't see how we're possibly going to fit all the treatments in one day! It will be about four hours on the nebulizer, and for a toddler, it's just impossible.

Beverly said...

No, she doesn't. I've questioned my son and his wife about that, and they said that their doctor had not prescribed those for Ella. Right now the only thing that she does is enzymes and CPT.

Currado Malaspina said...

Yeah, nice when things work out the way they're supposed to! THANK GOODNESS! And phew. - Monster

Froggymama said...

Beverly, it always amazes me how not only different all the clinics are, but how even the docs within the clinic differ so much. I always get the feeling that there is no "one way" in the CF community. Our doc put Froggy on albuterol and pulmozyme at 4 months! She said they are very aggressive about preventing lung infections, rather than treating them after the fact. Which I totally agree with. Not that you can prevent everything, as we discovered this week! I know pulmozyme has not been approved for kids under the age of 5, which is always scary, but I'm hoping the benefits outway any side affects. And to my knowledge, she hasn't had any. I would definitely ask your pulmonologist about albuterol, because it's very safe and effective in opening up the passages for airway clearance.

Infidel Rooster said...

Well, the treatments have definitely gotten better and better. When I was a toddler they put me in a "mist tent", which is basically just that. A big tent that fit over the whole bed and filled the entire space with a thick mist. Besides waking up freezing my bony little a** off from being completely soaked, it turned out to promote lung infection because of the moisture.
It sounds like you all are chugging along.
Heres to science, medicine and perseverance on the part of you all.

Anonymous said...

glad to see this post!! and i'm glad you had a nice night out too. :-) jcn