It's 11:00 Thursday night. In 40 hours or so, we should be heading home to Louisville. Can't wait. Really, I just can't wait. Time is at a standstill it seems. Come on Saturday afternoon, come on already. Trying to stay busy. Not an easy task. Not much to do around a hospital except take care of Colby, sit, wait, eat, wait, watch TV, blog, wait. I just got back from taking a shower. I figured what the heck, I'd go ahead and take one today.
Yesterday there were a couple other SMA families here for outpatient appointments and I was able to meet up with them and say HI. I was so happy to finally meet a particularly sweet, sassy girl for the first time. She has beautiful eyes, gorgeous fingernails and wants to be a praying mantis for Halloween. I cracked up when I heard that. Like her mama said, not a cute glittery ladybug, a praying mantis. I just love independent thinkers! Also met up with another cutie pie who was here for a followup pulmonary appointment. I think I've finally met the only child on the planet more spoiled than Colby Michael! It was hot in the room, seeing that there were 5 of us crammed in there. So the grandma was moving the door open and closed to get cool air moving in. You should have seen the look on that stinker's face when she stopped. He was like, oh heck no Granny, get back to fanning. It was priceless!
Going to try and stay busy tomorrow. We will be particularly busy at 10:00 when our Trilogy is delivered and I get trained on it so we can take it home Saturday!! Score!! A company from Corbin, KY, is bringing it up here (thank you Beth P.) and I can't wait to try this bi-pap when we get home! Ambulance service is supposed to pick us up Saturday at 3:00ish, and they better not be late! The teacher who is going to do Colby's home hospital called. I need to call her back and set up times for Colby's schooling to start next week. Then there's this damn surgery issue to deal with. Thought I had it figured out, but now there are major scheduling conflicts and it's a total cluster you-know-what. I can't even deal with all that right now. I just want to concentrate on getting Colby home, sleeping for at least 2 days straight in our own beds, and taking it from there. Oh yeah, and I need to talk to my bosses and figure out when I'll be able to get back to work. Then they'll have to write letters to the nursing agency with my schedule in order to get a nurse to stay with Colby while I work. My stepdad is coming up tomorrow and we're sending a bunch of stuff home with him that we won't need anymore, so that'll take up some time too. Good grief, now it's only 11:20 on Thursday night. The next 1.5 days are going to be extremely, painfully slow and nerve wracking for me. Lord grant me patience, and hurry the heck up, please!
I did hear some sad news. Fr. Mike stopped by. You remember the fat, jolly, forgetful priest with the really cool suspenders (he was wearing heart ones yesterday.) He came to Colby's room, as he has done every Wednesday since our stay here, for a prayer/blessing. He said yesterday was his last day at Cincy Children's. He said because of costs/budgeting, the hospital couldn't afford to pay his mileage monthly, as he was driving a long ways on the 2 days he was here. So they're going to replace him with other local priests I suppose. What a huge loss for this hospital and the families who come here. He's a sweet old guy, always smiling, joking, and his homilies were quite short but had meaning. He brought a smile and comfort to us when he stopped by, even if he did forget my kid's name all the time. What a shame.
Okay, I'm going to try and go to sleep now, although this unit sucks for sleep. It's loud and there's way to much lighting. Some of the employees on the night shift need to use their indoor voices. In other words, shut the hell up, there are exhausted patients and parents around here trying to catch some zzzz's for crap's sake. Yeah, it'll be all I can do not to blow my top between now and Saturday at 3:00. Think I'll start with that dorky, snot nosed, pesky little rodent, sorry I mean resident, who doesn't know the first thing about SMA, or my kid. Seems he could use a good butt chewing. Morning rounds could get interesting :-)
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