CF Update

Yesterday we went up to the CF clinic for another appointment. We've been going up there about once a month, and now we're moving to every two months. When Madeline turns one, we'll switch to a three-month schedule that she'll stay on the rest of her life. Yesterday's visit was great because everyone was simply wowed by how fabulous Madeline looks. They couldn't stop squeezing her thighs and saying, "She looks so good! She doesn't even look like a CF baby!" For the record, she is now 17 pounds 3 ounces (36th percentile) and 26.57 inches (40th percentile). The reason her weight even matters, by the way, is that healthy growth is associated with better lung function.

When we first started going up to the clinic, we had a few appointments that stretched to six hours by the time lab work and everything else was finished. It was pretty exhausting. Now our appointments last about two hours (which is standard, I believe), plus we know what to expect most of the time so it's not as nerve-wracking. As in, no nerves wracked at all. Our appointments usually go something like this:

We check in. (It's the one doctor's office where I've never had to wait more than two minutes, by the way!) The nurse's assistant weighs Madeline, measures her length, and checks her blood pressure. The nurse then does a throat swab, which they use for a throat culture that checks for any dangerous bacteria in Madeline's throat and lungs. Certain types of bacteria that are no big deal for healthy people can be very dangerous for people with CF, hence the standard check. So far Madeline has been completely fine.

Once these preliminaries are taken care of, we go to the exam room and wait as a slew of people come to us. First it's usually the pharmacist. He goes over a list of Madeline's medications to make sure the clinic knows everything she's taking and to adjust any dosages as necessary. Then we talk to the social worker. I felt like a real winner the first time we had to talk to a social worker, but it's really no big deal. She just makes sure we have the financial and family support we need, gives us information on insurance, tells us about CF support groups, etc.

Somewhere along the line a respiratory therapist comes in to check Madeline's oxygen levels. Madeline always does really well on this; yesterday she was between 99 and 100 percent the whole time, for example. If we have questions about Madeline's chest physical therapy (CPT), we ask the respiratory therapist, who gives us additional training as necessary.

Since I last posted about it, Madeline's CPT has been bumped up to twice a day, for half an hour at a time. We try really hard with the CPT because it's so crucial for her lungs to stay healthy, but right now this is the only part of her care plan that is seriously hard--not because I mind doing it or don't have the time, but because Madeline is the master wiggler! It's not really surprising that an eight-month-old baby (as of yesterday) would want to be moving around, but wow. She's always trying to dive off my lap and it gets interesting. I've learned to be creative as I try to occupy her with activities that she can do (1) with her short attention span and (2) while she's being relatively immobile.

Okay, back to the clinic. We also see a dietitian each time we go. The dietitian tracks Madeline's growth to make sure she's growing quickly enough and reaching a healthy weight. She also gives us advice about which foods Madeline should eat to consume as many calories as possible. Since we've been introducing solids, the dietitian has talked about which foods we should start with and has told us to get Madeline going on meat as soon as possible because of the protein. The dietitian simply couldn't be happier with how well Madeline is growing. She's on the high end of weight gain and is catching right up to where she's supposed to be.

Last of all, we see the pulmonologist, who is the head of the CF clinic. She listens to Madeline's lungs (they sound great), checks on how the enzymes are going in case we need to adjust the dosage, and answers any other questions we've got. Sometimes Madeline will get a chest X-ray afterward or have some lab work done, but yesterday we didn't have to do any of that.

So, that's a CF clinic visit in a very large nutshell! Hope you enjoyed.