"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, July 2, 2008


Or really more like a slow drip over about an hour and a half. But the outcome is still the same. When Marissa sleeps, she moves around the whole crib. For a "normal" kid, this would not be a problem. But for Marissa, who has three tubes and wires attached to her when she sleeps, it presents a big problem. When she moves her foot , the very sensitive pulse-ox alarm goes off. When she rolls over and shimmies down to the other end of the crib, her trach mist collar comes off her trach and ends up humidifying her chest or her back or the side of her neck, doing her absolutely no good. And, if she squirms enough, her feeding tube becomes disconnected from her stomach. That is what happened this morning. She gets a continuous overnight drip of formula all night long and this morning when Jeremy's alarm went off at 5:40, I got up to check on Marissa, rolled her over and discovered a huge wet spot extending from her diaper area to the top of her chest! I checked on her last at about 4 am, and I check on her regularly through the night to prevent this very thing from happening. So I had to wake her up at 5:45 to sponge bathe her and change her clothes. And then of course she wouldn't go back to sleep, so it's going to be a long day! It's not like this has never happened before, I've just never had a blog to write it in before! Oh well, such is the life of a trach and g-tube mommy!