CF Clinic Visit

This past Monday was clinic day. Our last couple of visits to clinic have been relatively quick (under 2 hours) and uneventful. I was expecting the same for this month as well. I left Kai with some friends (thank you Kelly!) and arrived 5 minutes early for our appointment. Finn weighed in at 17 pounds 15 ounces and was 27 3/4 inches long. I was so, so proud of him. Those measurements are the exact same as Kai's 12 month measurements. That means that Finn is now 2 and 1/2 months ahead of Kai! Considering 8 months ago he was 3 pounds under Kai's weight at the same age, we really have come so incredibly far.

I should note that going into the appointment, Finn had been off for weeks. For at least two weeks, he has not been sleeping like he should and his eating had become a bit sporadic, but not bad. About 2 weeks before his appointment his diapers had begun to look like he needed an increase in enzyme dosage. So, we changed his dosage from 2 capsules per meal to 3. Two days later, at his 9-month well visit with the pediatrician, we discussed possible reflux symptoms and increased his Prevacid dosage as well. So, in a short time of two days, he went from taking 15 pills a day to 22. Yikes, poor kid. Add in the fact that we all came down with colds at that time, we permanently dropped his 3rd nap, and my sister and her fiancee were visiting, well....poor Finn was trying to adjust.

So, at clinic we talked about the normal things--sleeping habits, eating habits, activity level, etc. He is doing absolutely great. There's always a question I truly dislike, though, and that is "Does he have a cough?" I never know what to say. In the past the doctor has said that her rule is 10 times a day. So, in general, no he doesn't have a cough. But lately his occasional coughing has started to sound more like gagging/hacking. We've seen some heads turn and have gotten some looks. I don't know how to tell people that he's not sick! So, I mentioned to the doctor, the RT, and the nurse that he doesn't cough 10 times a day, but he does have a bit of a loud cough. They felt that this counted and that since I have reported that he's had a cough for a while, it is time to try something else. We now have our first prescription for Pulmozyme. There are many, many more to come I'm sure. Pulmozyme is a nebulizer medication that all CF patients take daily starting at age 5 (according to our clinic team). His doctor thinks we should try it now to see if we can shake this cough. If we can clear it up, we can stop. (really crossing my fingers on that) The doctor said to try it through to our next appointment--his annual visit at Childrens' Hospital. In addition to this new prescription for a nebulizer and Pulmozyme, I also had to resign some paperwork for a clinical trial he's participating in (a national CF registry), and I spoke to the some of the team about insurance woes we are having. They have been trying to help us out, and I'm so hoping that someone can fix this. All-in-all, we were there for over 3 hours! Poor Finn was so tired that he passed out in his car seat before we ever left the office, which is something that he hasn't done in a long time.

I left the appointment feeling overwhelmed and, admittedly, a bit defeated. The thought of going on this new medication just did not, and still does not, sit well with me. I always envisioned that the kids on the nebulizers were really sick, and Finn isn't. I felt as if I had failed him in some way, even though I feel that most of the time I'm doing the best I can. And mostly, I worry that I'm the mom who "cries wolf". I worry that maybe I'm making more out of it then there really is. I worry that they are putting him on these medications just because I'm paranoid. I worry that I'm making mountains out of molehills. I expressed a small bit of this to the nurse and she told me that wasn't the case and that they were the ones who had asked the question. True....I wouldn't have said a thing if they hadn't asked the question.

Two days later, our care nurse from our insurance company called and I talked through some of this with her. She has made me feel much better about things and has reassured me that I'm not one she would think is "crying wolf". I'm glad she thinks that, but I still am not so sure.
We have received our nebulizer, but we have yet to receive our medication. Don't even get me started on that one.......But I'm ok with that for now. We have years of nebulizers ahead of us. I figure a few extra days of normalcy isn't a bad thing.