Another CF Update

Today we had another appointment with the CF clinic. We've been going there every two months, and now that Madeline is one year old (!), we'll start going every three months instead. Our visit today was positive overall, but as usual, we'll be adding a new trick to our routine that is sure to make life interesting for a couple of days until we settle into a new rhythm. This time around I actually feel very calm about the change, so I'm hoping things go well when we start tomorrow.

Should I explain what's going on? I thought so. Madeline will be starting Pulmozyme, which is a mucus-thinning medication. She will inhale it through a nebulizer once a day, and it will likely take 10-12 minutes each time. We'll add this to our other treatment time, but I'm not sure yet if we'll do it in the morning or the afternoon. I'm guessing the afternoon, because she gets pretty hungry in the morning and I don't know if she could handle another 12 minutes. Then again, she gets pretty tired in the afternoon and I don't know if she could handle another 12 minutes. I guess we'll find out what works the best within the next few days!

M. probably would have started Pulmozyme within a few months anyway, but the impetus for the change at this point is that she has a really, really nasty cough right now. She's been sick for about a week with a double ear infection and something else, and her cough is simply awful. The pulmonologist said she probably has RSV or some other virus that has a really long name [hMPV]--both of which are really going around right now--and the Pulmozyme should help her clear out the mucus and get over the virus much sooner. Not to mention help her avoid getting lung damage and all that great jazz.

The day before we started the saline treatments back in November, I realized that Madeline would probably never spend another day in her life without doing some type of a nebulizer treatment. It just comes with the CF territory, and the ability to do those treatments and make such a huge difference in a child's health is really a miracle by itself.

Still, knowing that once we started the treatments we would never go back hit me really hard. It was just one of those moments when CF seemed very real and intense, if that makes sense at all. I think that is partly why starting the treatments was such an emotional time (in addition to Madeline simply needing to get used to them), and now that I'm past that hurdle, adding one more medication doesn't seem like too big of a deal. Pulmozyme is supposed to do an amazing job of breaking up the mucus and clearing out the lungs, so I'm kind of excited to help Maddycakes out that way.

Nebulizer time has actually being going fairly well during the past few weeks, even though Dave's school schedule is a little more rigid this semester and I have to do the treatments by myself 80 percent of the time. About a month ago Madeline started getting really into books, so most of the time she'll sit there fairly calmly while we read books together. Of course she does her fair share of shrieking and wiggling and trying to dive out of my arms, but if we spend about half the time reading and half the time singing funny songs, she's really quite a champ.

Something interesting about Pulmozyme: Madeline's dose costs $2500 for a 30-day supply! Yikes. Thank heavens for good insurance. And I'm also very thankful that Madeline learned how to deal with a nebulizer with a cheaper and less important medication.

Wow, I've really managed to go on about Pulmozyme for a long time! Other than that change, the visit was very routine. Everyone was VERY impressed with Madeline's weight gain, which I love to hear. She actually lost a whole pound this last week while she was sick, but she still managed to have a really healthy weight in the end. We were happy to hear that.

And there you go. Another CF update.