TOMORROW, TOMORROW, I LOVE YA, TOMORROW

Because we're out of here. Later, we're blowing this pop stand. See ya, wouldn't want to be ya. We gots to be going on our way now. See ya around like a donut. You get the drift. Ambulance is scheduled to pick us up at 10AM tomorrow morning. Colby is peeing and pooping just fine. Colby is tolerating his home feeds. He's getting all the ingredients that are in his home recipe, along with all the free water. We're running at a continuous rate, and we can start working on boluses when we get home. As far as I'm concerned, it was more important to see if Colby could tolerate all the ingredients than whether or not he could handle a bolus. The TCC went along with this logic. I may try to give him a bolus later today, just to see how he does. Oh no, that means I'll have to use my brain and do some simple math. Don't know if I'm quite up to that or not.

They removed Colby's PICC last night, all 66 cm of it! Holy crud, the nurse kept pulling and pulling that thing out. Unbelievable. In rounds it came up what they should do with Colby's port, since he is now getting everything (food, fluid and meds) through his g-tube. I said don't you dare touch it. Keep it accessed until we are walking out the door. No way am I giving up Colby's access. I know how things can go. We'll de-access his port tomorrow, just as I said, last thing as the ambulance stretcher is about to roll him down the hallway.

Really that's about it. I'm thrilled beyond belief that we're heading home. I'm sure Colby is happier than all of us rolled together. Yes, Colby hit a couple speed bumps over the last 15 days. But overall he has done FABULOUS with this spine fusion surgery. He is a strong, patient, brave, remarkable young man who continues to amaze and make me proud every day. I would say we received 99.9% excellent care while here. There's always going to be a nurse or therapist who rubs me the wrong way or is a total dingbat, but most everyone has been great. So thankful this hospital is here for us. When I read or hear the way other SMA families are treated in other places, it breaks my heart. Been there, done that. I know firsthand what it's like to argue with a doctor, saying no really, if you continue the path you're on, you'll kill my kid. Not this hospital of course, the children's hospital at home. But that's another bunch of stories for another day. Again, just incredibly thankful for all the wonderful staff at Cincinnati Children's. They rock. They took excellent care of my sweet boy, my parents and me.

Colby's discharge is coming with perfect timing. It was time for Mom and Dad to trade their "shifts". Mom left today and Dad came up with the van. That way Colby and I can ride in the ambulance and Dad will be able to use the van to get Colby's power chair home, along with all our other personal belongings. We've had a couple of visitors over the last 2 days, and let me just say THANK YOU, gals, for coming to see us. Really does help break up the monotony of the day.

I've been working on the nursing schedule for the rest of the week. I've learned one nurse is out of town with a death in the family, unsure of when she'll be returning. That would be our only full time day nurse. Well okay, so it's going to be interesting when we get home. But I'll make it work. I always do. We'll manage somehow, I'm guessing with the help of my mom and dad, again. One step at a time, just get us home first, right?

Going to wrap this up now. I told Colby a couple of hours ago, hey Colby, you're going to get your cough treatment at 3:00, then we're going to try and sit you up in your chair. He started whining. I felt horrible. All we can do is try. I'll have them give him a dose of valium before sitting up. And if after a few minutes he's uncomfortable, we'll get him back down. But the more he sits up, the better it is for him, so that's what we're going to do, in moderation of course.

Hopefully tomorrow this update will come from the comforts of my home computer. Will update when I can. Thanks everyone for the prayers. I do believe they've been answered.