It's Monday and how do I know this? Because of the traffic here in the hospital corridor. It was so quiet around here over the long holiday weekend, almost eerily too quiet. But when I came down to get some lunch today, there were people everywhere! That at least tells me it's a weekday for sure. And the staff changes our dry erase board in the mornings to tell us who the CN, RN, RT and PCA are for the date. Someone was kind enough to write Monday, July 7, on today's. Other than that, I wouldn't have a clue what day it is. They all seem to run together when you're in the hospital.
We tried to sit Colby up yesterday, but it didn't go well at all. He lasted not quite 45 minutes. This has me puzzled. I know he's been through a lot and we can't push it. But he's been able to tolerate 1 hour to 1 hour 15 minutes sitting up. I even had them give him a prn dose of valium right when he sat up. We had taken him outside, and I was keeping him distracted. Our amazingly sweet, thoughtful SMA friends had brought Colby 10 individually wrapped presents to open while in the hospital. What a wonderful, fantastic idea! It gave him something to look forward to each day. We were outside opening his last gift. The weather was beautiful. But Colby wasn't having it. He was fussing and started crying, and I was like oh heck no. Can't stand to see my sweet boy cry. So the 4 of us - one to carry a portable monitor, one to carry his IV pole, Grandma, and me to drive his chair, headed in again. I know it will take time. I hated it for him. You could tell he was miserable. I haven't chanced it today, no sitting up in his chair. I've sat him up in bed a couple times and that will have to do. We'll worry about that sitting up in the wheelchair nonsense tomorrow.
Colby had massage therapy today. Or maybe it was healing touch therapy. Or maybe it was energy therapy. I don't know, but a very nice lady came in and talked sweetly to Colby and whatever healing or energy she gave Colby it worked. When she came in he was sitting up in bed watching Aladdin (can you believe that boy has never seen that movie?!) She hadn't been gone 5 minutes and that child was sleeping, glasses on, sitting up in bed. That's the lowest his heart rate has been all day. Should have asked her to work on Grandma and me, too. Lord knows we could use a little relaxation therapy at the moment, too.
We've started bolus feeds today. Yack, makes me nervous. Of course they're wanting to rush it along, and I said whoa, Nelly, hold your britches. Today he'll get 3 bolus feedings that take an hour to run. We have discussed making his full formula recipe tomorrow and started it to see how Colby tolerates it. I'm still pondering this over. But seems as well as he's doing with his bolus feeds (still just Pedialyte and Vivonex TEN, we could start all the ingredients of his home feeds at a slow rate. Yes? Or is it too soon? Hell, I don't know, it's our first ileus experience. And I pray to God our last.
Let me say WOW, just wow. Colby's day nurse today was a total rock star. She's waddling around the TCC, 38 weeks pregnant, and never missed a beat. She was AMAZING. Kept Colby exactly on schedule. Always smiled and was very friendly. Crap, I'm never that friendly to anyone, ever, and I'm certainly NOT miserably pregnant about to pop. I hope when she gets home she can rest and has a nice, sweet hubby to take care of her. She deserves a little pampering. She waddled those little legs off for Colby today. Makes up for a couple other poo-poo head nurses that weren't so rock starrish, in my humblest of opinions.
I've saved the best news for last. The word HOME was mentioned in rounds this morning. Zippidy-freakin-doo-dah. We're thinking Wednesday or Thursday. I talked to the discharge nurse about getting an ambulance ride home for Colby. No way he'd be able to make the 2-hour ride home in the van sitting up in his wheelchair. Not even an option. I'd roll his hospital bed out the front door and push him the 100 miles home before I'd let that happen. We'll talk about HOME more in rounds in the morning. But if Colby continues to tolerate feeds as well as he has been, there's no reason for us to stay here. Getting his tummy working again was the only thing holding us up, and it appears to be resolving nicely. Suck it ileus, we're blowin' this pop stand.
Again, we (my parents, Colby and I) want to thank everyone for supporting us in this spinal fusion adventure. THANK YOU for the prayers most of all. THANK YOU for the good vibes and warm thoughts. THANK YOU for asking if there is anything you can do to help us. THANK YOU for the texts and Facebook posts letting us know you care. THANK YOU for the visits and goodies some of you brought to the hospital. Thank you all so much. Please know we're grateful for the concern and love you have shown us. We'll be heading home soon, ready to plan and/or seek out our next adventure!
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