Friday, February 12, 2010

Confessions of a Chronic Cougher

I received a great question by a mom over in the CysticLife community that I wanted to take the time and answer over here on RSR. Here is her background story with (bolded) questions:

levi has been sick for about a week and now he is to the point where he is coughing while laying down, running around and basically on and off all day. its a wet junky cough and i swear i have been using my stethoscope for the past 3 1/2 years and i never can tell what the heck im hearing if its a wheeze if its not? so anyways the last three times he has been in over the last few months with colds he has not cultured anything not normal so the doc has been going back and forth as to whether or not to admit him so i really dont want to push taking him in because id hate to see him go in at this age. last time he was a champ but he was a little over 2 and honestly would get poked and then forget about it but now he is older and brighter so he knows whats coming he still does really well and isnt afraid of the doctors or anything like that but we want to do what is best for him. he usually gets a cold and starts with a runny nose then he starts to get a wet cough and then he starts the wheeze so most of the time he starts an oral antibiotic and then prednisone. he already does albuterol 3 times a day and his vest 3 times a day for 30 minutes. we started that after his last hospital stay because they did it 3 times a day when he was in so we thought is three better than 2 and they said yes so why the heck wouldnt we continue that if it is better so right now he is doing his vest 3 times a day for 30 minutes and he doesnt mind it at all he actually likes it because that is the only time we let him watch tv that way he looks forward to it and an hr and a half is enough tv in my option for a 3 year old. so anyways he is already doing that all the time so is there anything else you think we could be doing to help him. its hard to because he totally wants to play and run around but then he just coughs more. i usually let him play until he decides its too much or if hes coughing a ton we just do something else like draw or something more calm. anyways i just totally rambled so we are at that place of not knowing what is best. any suggestions or insight to how you feel when you are going through something like this. its hard because he can only tell us so much of how he is feeling. we know his body pretty well but only externally from what we see we see and hear but we cant tell how he is feeling. basically we do all that we can he never misses a treatment well i shouldnt say never (well maybe 2 or three when we go to disneyland or the beach or something fun but basically we are all over his health and do all that we can to keep him healthy. so any advice would be awesome! sorry for rambling. k the boy is off the vest gotta run. we will be in touch. have a great night!

First of all, I can't stress enough that it sounds like you're doing a wonderful job in raising your boy! It sounds like you've found a nice balance between his life and his cystic life. A couple things I would say to you however...

One, coughing does not always mean sick. I'm a chronic cougher. There, I said it. No seriously though, I cough all of the time. I've coughed since I was his age and I continue to cough now. I coughed when my lung function was over 100 percent and I cough now with it in the 60's. Point is this, it's important to look for other signs that your child is giving in order to determine an exacerbation or not. You can check mine off the list every time I get sick. I'm more tired but I sleep less. I have to force myself to eat. I wake up in the middle of the night coughing; all night long. I usually wake up more tired than when I went to bed. I have a REALLY tough time motivating myself to exercise. My stools float more. They're stinkier. I'm generally nauseated. And I can't get my mucus to ever be clear at any point of the day. Whew!! I know, quite a list. But, it's important to note, that that is MY list. As a parent, you want to make mental notes about some things that ALWAYS happen when they are really getting CF sick. For me, coughing isn't one of them. I'm always doing it.

It sounds like you have your son on a very strict treatment regiment. Here's a couple of things I would try to switch it up. Have you ever thought about hand pounds? For me (apart from running), nothing works better at getting the mucus up and out. Ultimately, that's what is important. Getting the gunk out of there. If you can manage the mucus, you can manage Cystic Fibrosis. Is there something that ALWAYS gets your son coughing? It sounds like it may be just running around and playing. I would suggest having him do that more. There's nothing magical about the vest, I hate to break it to you. I mean, it does a great job for most people in doing it's job, but it's not the only horse in the race. We as a community have to figure out what works best for us at clearing out our lungs and forcing us to take deep breaths. You, as his mother, have that responsibility for your young son.

Also, to get back to what you hear when you listen to Levi. You may never hear him wheeze. In my 30 years, the doctors have told me that they have heard me wheeze less than 5 times. In fact, 9 out of 10 times, even while in the hospital, they say I sound "pretty good". Maybe it's because of all that coughing I'm doing :)

Last piece of advice. Use your instincts as a mother. There's no guide out there written specifically on how to manage your son's CF. We're all different. Sure, we can take bits from some and pieces from others, but like I say to people all of the time, "You're CF has NOTHING to do with anybody else's CF". The proverbial different strokes for different folks. Don't ever make decisions based on being the mother of a child with CF; make decisions based on being the mother of a child.