Boys!!

Things have been so quiet I keep waiting for the ball to drop. We haven't had as much as a cold in our house in months, knock on wood. We got Jax longer trachs, and when we first changed it, he coughed and was super junky all night. I was quite worried that he wouldn't tolerate the length change, but the next morning he was fine. I guess its like getting a whole new trach because its irritating a part of the trachea that wasn't touched before. We are also adjusting his blood thinners because his levels have been high, but getting his hemo doc to call us back before Christmas is proving to be taxing. I'm also wondering how much his cecostomy is actually working. His surgeon didn't know if the cecostomy would do him any good, but we gave it a try. It seemed to at first, but I still have to give him suppositories to completely flush him out. Now that he has the trach he seems to swallow a lot more air. I vent his g-tube as much as I can but he still gets a lot of air into his gut, and since he can't even "toot" on his own, I'm giving him a suppository sometimes twice a day to relieve his distended belly. Plus, because the tube goes into the bowel, the area is always red and irritated. It sometimes even bleeds, if stool has leaked out. I'm debating if we should just pull it out and let it heal. I don't know if it has to be surgical or not, because if stool leaks into the abdomen that would be bad. We'll talk about it after the holidays. It would be one less tube to take care of!!

I love this pic. I don't know why, but its my new favorite.


The boys frosting cookies last night.



All done, the boys frosted a couple each, and I ended up doing the rest. Boys lose interest quite fast. And soon they were back to.........

what they are normally doing.