Wednesday, July 6, 2011

One Day at a Time

I was supposed to start volunteering for the ParentTOUCH program tonight but had to cancel due to a sore throat. The last thing they need being brought into the NICU is germs, so unfortunately I had to postpone. I'm hoping for a relaxing night and to get all unpacked from our 10 day adventure and settled back in to our house.

Drew woke up the past couple of mornings with a little fever. Some Motrin took it down, but its making me think that his ear infection is back. I had asked the pediatrician about tubes the last time we were there for Lily, whose had like 6 ear infections this year, and she said that they don't usually do tubes if the kid gets an infection and then antibiotics get it to go away. Its more for if they can't ever seem to get rid of one infection. And that seems to be whats going on with Drew. I have a call in to the CF doc to see if they will take a look at him and get their opinion. I've heard that many CF kids end up with tubes because of their inability to appropriately clear secretions (that mucus clogs all tubes, not just lungs, so sinuses are usually affected too). I wanted to see if they had a different antibiotic they would recommend since ammoxicillan, omnicef, and azithromyacin all haven't been able to get rid of it. I'm starting to get the feeling that the recommendation for tubes is right around the corner. And i'm fine with that, especially if it means not having to be on antibiotics that aren't doing anything anyway. I guess we'll see. There was no fever this morning so maybe he's fine.

I have to say that we stuck to our treatments and routine 100% while we were away. Sometimes I think it would be nice to give Drew a day off, but what would be really nice for Drew is if he stays healthy which means no days off. We've switched him off of Albuterol and onto Atrovent because for whatever reason it seems to work better for him right now. He only get Hypertonic Saline once a day now, but when its really hot out I sneak in another just to try to replace what he loses sweating. I'm also trying to keep him super hydrated. He usually doesn't want straight up water but he will drink it with a splash of apple juice in it. I'd like to get him into gatorade or some other drink that's heavy up on the sodium. He eats a ton of peanut butter so that's good for us. He definitely struggles with his breathing when its hot and humid out, and even more when hes running around the house playing. That's mostly the malacia (we hope) and not his lung function. We're supposed to have a hi-res CT scan before the end of the summer but I've put off scheduling it until we're done with vacations. He always picks something up in the hospital, and he's gotta be put under for this scan so I'd just rather wait and enjoy our healthy, fun summer. I'm hoping this fall and winter aren't as bad as this past one, but I'm just trying to take things one day at a time.

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