Clinic Visit

We had a clinic visit yesterday. I felt like we hadn't been there in ages, when in reality it was just over two months. I hadn't had to call or make one visit there since our last appointment because Drew's health has been so good. It was pretty remarkable that he went that long without getting sick or having something happen that would at least merit a call to the clinic, but it happened.

The doctor thinks he looks and sounds great. The head cold that he's had for 3+ weeks now was diagnosed as a sinus problem. Apparently most people with CF end up with some degree of sinus disease. Just how a cold that gets into the lungs has a hard time getting out, so does a cold that sets up shop in the sinuses of a CF kid. What for Ella or Lily would have just run its course as a runny nose, for Drew turned into inflammation of the sinuses and extra mucus production creating an infection that he wasn't able to clear on his own. We ended up on a nasal steroid and some oral antibiotics for 14 days to get that cleared up. Very luckily, nothing had moved to his lungs at all and hope is that remains the case. They did do a throat swab to check for bacteria in his lungs, and we will have those results back by the end of the week. I asked what our course of action would be if he was growing pseudomonas or something again, and the doctor said that based on his awesome clinical appearance, nothing would need to be done until after Christmas. What a relief to not have to worry about squeezing in extra treatments over the holiday weekend!

I talked to the doctor also about the hunger strike that Drew is on. It was a damn miracle that the boy gained any weight between the last visit and this one because his diet consists of whole milk and an occasional corndog. He refuses almost everything, and yet somehow he continues to gain weight. Because weight is such a huge issue for many CF kids, it causes a lot of anxiety for me when he won't eat. I fear that he will end up with a g-tube feeding him overnight just to get in enough calories. Its not the end of the world if that happens as its the reality for many folks with CF, but with the good weight that he's always been able to show us, I would just hate for things to turn that direction. The doctor and the dietician both think that his weight is great and I shouldn't worry. He's in the 90th percentile and the goal for CF babies is to make it to the 50th. If he loses a couple of pounds we'd still be in good shape, but I just feel like if we allow this sort of behavior now that it could eventually turn into a problem. They recommended that we meet with a behavioral psychologist who specializes in eating issues in kids with CF. I spoke with her for a few minutes before setting up an appointment to come back, and she suggested that for kids his ages, its simply about control. They can't control much, but he knows hes got my attention with his mealtime antics, and she can offer some suggestions for making meals a better experience for all involved. We'll see what happens.

The other thing that Drew's doctor mentioned was the feedback that they had received on the presentation that was done on him at the NACFC. Here is the link to it - http://nacfcdl.cff.org/Documents/Wyatt.pdf . She said that the presentation provoked a great deal of conversation, and that a group of doctors and researchers wanted to further expand on this presentation with more studies and research. How cool that Drew started a conversation about malacia and airway abnormalities in CF that could lead to more research on the disease?!

Finally, some more great news out of the CF world just posted today. Kalydeco, the drug that's currently going through the approval process in the FDA, is now available at participating clinical sites throughout the country for people with the G551D mutation who have highly limited lung function and may benefit from treatment. The drug that may just change the game for us as we too have a class three mutation (though not the specific one tested) is already being used to change the lives of people who are critically ill with CF. What a great Christmas gift for the people who will benefit from this drug!! Hopefully it works for them and will work for us when it becomes available soon.