Welcome to the community! Four more things I don't think I've seen mentioned that you should ask your clinic about (or with number one just get used to doing.)
First, get in the habit of washing/Purell-ing your hands a lot. Get the rest of the people living in the home used to doing it, and get your CF-er used to doing it. Try to teach your CF-er not to rub his eyes or put his fingers in his mouth after touching things. (Basic how-to-prevent a cold/flu kind of things. Just amp it up a bit so you get used to it... after a few months, it becomes second nature, and you won't even notice yourself using the Purell anymore.)
Second, at our clinic, the rule is if your CF-er has chest cough for 3 days, you need to call your CF center and if your CF-er has a runny nose for more han 7 days, you need to call your CF center. CF-ers get put on antibiotics earlier than most kids (and get put on them when other kids wouldn't) to protect the lungs. Find out what your clinic's protocol is for this.
And, if your CF-er is on enzymes, that means he's pancreatic insufficient, which means that his body is not able to release the enzymes it needs to digest food. When you're at clinic, you're going to have to ask about the digestive element of his CF. Most of us here are very used to this now, but prepare yourself to talk about a lot of poop. (Really, you'll have conversations you never knew you'd be having.) There can be problems with constipation that need to be taken care of since a CF-er's constipation looks different from everyone else's (they can poop and still be constipated), and your CF-ers poop can tell you if he's having malabsorption or not (if it floats, there's malabsorption, and you should call the dietitian on your CF team to see about a possible enzyme dose change. Really, stuff you never expected.
Finally, CF-ers are asked to maintain a height and weight at or above the 50th percentile in terms of BMI. (This is to promote optimal lung healthy.) You need to know where your CF-er is at there and ask for diet advice for keeping him at the appropriate percentile. CF-ers usually eat a diet that is high in fat, protein, and calories, although your dietitian will be able to help you devise a menu that is specifically appropriate for you. (And a number of us here can help give you some pointers after your appointment, as well.)
But, just so you know, there's a steep learning curve in the beginning, and then everything becomes second nature. It sounds like he will be in good hands with you since you know enough to find out what the right questions are. Good luck!
Erin
First, get in the habit of washing/Purell-ing your hands a lot. Get the rest of the people living in the home used to doing it, and get your CF-er used to doing it. Try to teach your CF-er not to rub his eyes or put his fingers in his mouth after touching things. (Basic how-to-prevent a cold/flu kind of things. Just amp it up a bit so you get used to it... after a few months, it becomes second nature, and you won't even notice yourself using the Purell anymore.)
Second, at our clinic, the rule is if your CF-er has chest cough for 3 days, you need to call your CF center and if your CF-er has a runny nose for more han 7 days, you need to call your CF center. CF-ers get put on antibiotics earlier than most kids (and get put on them when other kids wouldn't) to protect the lungs. Find out what your clinic's protocol is for this.
And, if your CF-er is on enzymes, that means he's pancreatic insufficient, which means that his body is not able to release the enzymes it needs to digest food. When you're at clinic, you're going to have to ask about the digestive element of his CF. Most of us here are very used to this now, but prepare yourself to talk about a lot of poop. (Really, you'll have conversations you never knew you'd be having.) There can be problems with constipation that need to be taken care of since a CF-er's constipation looks different from everyone else's (they can poop and still be constipated), and your CF-ers poop can tell you if he's having malabsorption or not (if it floats, there's malabsorption, and you should call the dietitian on your CF team to see about a possible enzyme dose change. Really, stuff you never expected.
Finally, CF-ers are asked to maintain a height and weight at or above the 50th percentile in terms of BMI. (This is to promote optimal lung healthy.) You need to know where your CF-er is at there and ask for diet advice for keeping him at the appropriate percentile. CF-ers usually eat a diet that is high in fat, protein, and calories, although your dietitian will be able to help you devise a menu that is specifically appropriate for you. (And a number of us here can help give you some pointers after your appointment, as well.)
But, just so you know, there's a steep learning curve in the beginning, and then everything becomes second nature. It sounds like he will be in good hands with you since you know enough to find out what the right questions are. Good luck!
Erin