Well as you might have guessed, we are still in the hospital. Bill is back at work and I'm back to spending the day standing at Stephen's crib and taking short breaks to read and check email out in the play yard outside Stephen's room. He's doing great, but has had trouble tolerating his feeds (he's been throwing everything up), so that's why we are still in the hospital. He really hadn't had anything to eat since last Wednesday until last night when they started him on some pedialite at 5 cc's an hour. That's basically a spit wad of fluid. He did well with that so they switched him over to some formula today at 10 cc's an hour and will slowly go up from there. They can't send him home until we know he can eat well and tolerate his tube feedings (26 cc's an hour) so he doesn't become dehydrated and then send his electrolytes and blood pressure out of whack.
I'll be honest, I'm getting really tired of being here. I just want to take Stephen home and have things return to "normal." It's been a bit harder being here this time because I know everyone is outside enjoying their holiday and having fun with friends and going to the beach. It makes you realize how not normal our life really is when you see everyone else having a normal life. Facebook has pretty much been my downfall today. I log in a lot because I participate in a support group for moms of kids with end stage renal disease, but I should just go on for that and avoid the rest of it when I'm feeling sorry for myself.
But Stephen had a good day today so far, so I have to be happy about that. He did some physical therapy, had a visit with Tuco, a Bijon therapy dog, and spent a lot of time sitting up and out of bed. Plus he has a great nurse today that's been showering him with lots of love. And as soon as a bed opens up in the step-down unit, we can get out of ICU!