PAIN AND POOP

These are the 2 main issues we discussed in rounds this morning, among other things. First, pain. Of course Colby is in pain, but I don't think he's in excruciating pain. I'm going by his heart rate and whether or not he is crying/whining/wincing, etc. Really what else do I have to go on? Currently his heart rate hovers around 120. That's 10-20 points higher than normal. I mentioned this in rounds. They said that's perfectly normal. No matter if his pain is controlled, he has no fever, he is halfway comfortable, his body has still had a major trauma and this is his body's reaction to that trauma. Okay, that made me feel better. A couple of hours ago his HR dropped to 105-110, and that made me a very happy mama. So the new pain management plan is as follows: discontinue the continuous morphine, but have the button available to provide an ASAP dose if necessary. Like when we're changing him, turning him, he's getting his CoughAssist treatment, etc. He is getting scheduled valium (every 6 hours) and Robaxin (every 8 hours) to control muscle spasms. They have also ordered IV Motrin, which is good because Colby's fever likes to come and go. A couple of hours ago it reached 39 Celsius, which is around 102 I think. Nope, ain't happening. So I stripped off his hospital gown and started putting cold rags on him. We also applied some ice packs to his groin area, which I'm sure Colby just loved. But no way am I going to let him lie there with a fever if I can help it. At last check, his fever wasn't back to 37.0, but getting closer.

Next area to address is pooping, AKA bowel movements (BM). I'm surprised they expect Colby to have a BM. What does he have to poop out?! He's been on TPN since Tuesday night. We just started his normal feeds last night but at a very slow rate, 10 mL/hour, and kept him on TPN. At noon we increased his feeds to 15 mL/hour and at 4:00 we increased the feeds to 20 mL/hour. Colby usually tolerates starting back on his feeds well. I don't want to rush him, though, so I may have them stay at 20 mL/hour for a while. We also gave Colby an enema today. Super fun for him I'm sure. He's had 2 sorry excuses for a BM. Come on Colby, we're going to have to do better than that, or you'll be getting another super fun enema.

Then came my heart attack moment of the day. Colby's cute little nurse bee-bops in and says, well, you all are getting transferred back to TCC. WTH?! Hold the phone! Good Lord please no! And are you freaking kidding me?! I think Colby is doing fabulous, just not that fabulous. He's been doing CoughAssist but not IPV, and I think he needs to do 1 IPV treatment before we head down to TCC. Plus, the child just had his back cut open from neck to butt for crap's sake! Then she came back in and said no, false alarm, you all are staying in PICU for now. I didn't know whether to hug her for telling me that, or throat punch her for making me panic in the first place. I can almost guarantee we'll be heading down to TCC tomorrow.

So that's the post surgery scoop for now. Baby steps of progress being made. Colby also got his Foley taken out today. Like I said, keep taking out tubes and not sticking in more is a good thing. Every person that looks at Colby's incision says it looks "great" "wonderful" "fantastic" etc. When the surgeon stopped by today, he said Colby wouldn't be fitted for a new back brace, that he didn't need one. I said seriously? Even for a couple of months or so during recovery? He said nope. I was very surprised to hear that. I thought once SMA kiddos had rib and/or spine surgery of any kind, they at least needed a new back brace for a while. Guess not?

I'd love to share some funny little story that has happened since we've been here, but I got nothing. I spend 22-23 hours or so a day in Colby's room, so really what fun stuff is going to happen there? They still haven't called us from Ronnie Donnie with a room. It would be really nice if we could get in over the weekend, especially since it looks like we're going to the TCC and they don't have sleep rooms. Last night we didn't get a sleep room. Colby was doing so well I was comfortable with my dad leaving. So he went to a nearby hotel and I stayed in the room with Colby. I'm not getting a ton of sleep overnight, but have been able to get in a couple good naps during the day. So I'm rested enough for the most part, not too bitchy or whiny. Just my normal, haha.

Keep those prayers and positive thoughts coming, folks. They're working. Colby is doing so much better than I anticipated. Not that I don't think he's a total freakin' stud, I just had nightmares of how this surgery and hospital stay were going to go. And you can't really blame me, we've had some Jim-dandy sucky ones. Maybe this one will be the exception to the rule. It's looking that way and I certainly hope so! More soon.