We had our clinic appointment on Monday and the labs from them came back okay. No pseudomonas (WOOHOO!), no staph, a little Haemophilus grew, but that should be covered by the Omnicef he's on for his ear infection, so we're proceeding as though that's gone now. But this morning he woke up and he just wasn't breathing right. When he's struggling, his nostrils flare, he pull in around his ribs when hes breathing deep, and his breathing is quick. This all comes with a very non-productive cough that's near constant. Think about how you feel when you can't catch your breath - you cough, you take lots of deep breaths, its exhausting. We did his breathing treatments this morning but they didn't seem to change much. This oppressively hot weather doesn't help any.
We had plans for Gymboree this morning. I was nervous about taking Drew there. Its like a little mini gym for toddlers and kids up to probably age 5 I would guess. I knew they would all love it, but my mind sees a germ breeding ground on the mats and balls and all the other stuff all those little sweaty germy kids have their hands and mouths all over. I decided to take them anyway. I'm really trying hard not to let my germ anxiety take over my life. I do my best to keep things like toys and hands out of their mouths, and always have hand-sani in my back pocket. They did have fun. Everyone was laughing and running around and climbing and playing, including Drew. But he still couldn't breathe and it was worse than ever. He had an almost constant cough to the point where I was afraid he was going to throw up and he was just almost panting trying to catch his breath. But he wanted to play. I used his inhaler a few times to no avil. Finally, after about 40 minutes we left. It wasn't an easy 40 minutes either. I got a few looks from other parents, and some compassionate comments about how he must not feel very good, but mostly it was glares and comments under their breath about how sick he sounds. They don't know hes got CF and their kids aren't going to catch what he has, and I didn't want to make it the topic of the day, so I just said hes got something that causes some trouble breathing somethings. Heck, I wouldn't want my healthy kids hanging out with someone who sounded like he did. I can't really blame them, but I still just hate those situations.
When we got home I immediately did another breathing treatment but it didn't change much. I gave everyone lunch, put them all to bed, and called his doc. The initial reaction of the nurse was to suggest that he be put in the hospital to be monitored. I told her how much I didn't want that to happen, and she said she would talk to his doctor and call me back. About 10 minutes later, his doctor called me back. We talked for about 30 minutes, and decided that because of the cultures showing no bacteria in his lungs, that the difficulty breathing and cough was likely a result of inflammation rather than infection. CF people have chronic inflammation in their lungs, but with Drew's malacia complicating things, he gets into cycles where he has more inflammation than normal which causes him to cough which causes more inflammation and on and on the cycle goes. He takes Pulmicort twice a day to help with that inflammation but its not always enough. We are going to put him on steroids for a few days to see if knocking out the inflammation will help to end this cycle and make him feel better. She was comfortable with us doing the extra treatments and stuff from home vs the hospital because we've been down this path so many times before. This is one of the reasons I can't imagine moving away from here, because of the trust and understand and care we get from his doctors that is just invaluable.
The other thing that will help him right now is taking it easy. Ha! Telling a 15mo. old to sit and relax is like I don't even know what. The calmer he is the less hard he will work to breathe allowing some time for the inflammation to go down and get better. Its like a sprained ankle - stay off of it - take it easy - and it will get better. I hope it works. Steroids have worked for us in the past. He's not on them often - a few times over the winter when we had particularly bad infections (with infection comes inflammation) and they seem to get him over the hump. I hope this malacia thing isn't a forever thing for us because it causes unnecessary problems when we already have a big enough problem to deal with. Its hot out today, and I thought we'd go swimming after nap, but I guess we will build a fort and all watch Toy Story 3. There are certainly worse things that could happen.
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