We are now 2 days post-op (“Day 4” is based to our initial admission date, then day 2 was surgery)… And we already broke hospital rules! Our surgeon wanted Colten to get up and moving today a bit so the goal was to do some upright sitting and a short wheelchair ride. He chose the wheelchair ride first because he insisted on going to the gift shop, which Richard and I supported – seriously – give this kid whatever he wants right now! As the nurse heard us talking, she said under her breath, “Well, you really aren’t allowed to leave the floor but since you already promised him, I hate to tell you ‘no’!” So she ran it by the attending doc and got his approval. Score. So whatever I tell this cute kid, you’ll just oblige? WINNING.
Today started with the first round of docs coming in at 6:45 AM, waking me from my blissful slumber snuggled up in bed with Colten, who groggily asked me at about 11:30 PM last night, “Momma, snuggle?” ABSOLUTELY! Back to this morning, we had docs come in at 6:45, 7:30 and 7:45 AM. These people seem to think we have nothing better to do here than talk to them at the early rise of the sun 🙂 More docs rounded at 9:45 and 11 AM, then we got a nice long break. At 11:50 AM we started the process of getting Colten into his wheelchair, down to the gift shop, and back up. This all had to be done in 30 minutes because that’s as long as he could be disconnected from the NG tube suction. It took all 30 minutes, and then a little (ok, so we broke two rules). But we succeeded in finding a new stuffed buddy. Apparently you can never have too many. Or at least Colten can never have too many!
When we got him back in bed and situated, he fell asleep fast and hard, for over two hours, stayed awake about an hour, then back asleep again for well over an hour. This time when he woke, he had the most beautiful smile plastered on his face for what felt like five minutes! I began to think something was actually wrong! But he smiled on, then said, “I want to sit in the chair.” So we moved him to the chair – no easy feat when your child has multiple lines going in and out of him, some plugged into things, draining into things, or draining things into him. Nurses are amazing!
Once in the chair we forced a bit of occupational therapy on him, playing with removable stickers (AKA “Colorforms” by all of us 80s kids). He is really resisting using his arms, likely because they’ve been poked, prodded, and still have IVs in them. His one, the one with a blood clot, is also a bit swollen so it’s hard to really use it and that’s his right arm, which he would rather use. But, he pointed, held stuff, and placed his stickers on the sheet, which was a huge step from earlier today when we could barely get him to hold onto a toy. And he made a scene from Charlotte’s Web (I’ve been reading that book chapter by chapter to the boys recently.) He wanted to hang out in the chair longer – I can’t blame him for wanting out of the bed – so we watched Toy Story until his eyes got a bit heavy.
After relocating him back into bed, the surgeon rounded one last time, checked him over, and between him and the nurse, they got him all prepped for a good night’s sleep. Today was a good improvement day. This is just one stage of many in the process and there’s a long way to go as his body “wakes up” in various places to enter into the next phase. The good thing is he doesn’t seem to be experiencing a ton of pain, so his frequency of morphine is pretty low compared to what they would expect. This is good because morphine will slow down his recovery.
Tomorrow brings some changes – increasing the anti-coagulant to help the blood clot more, and likely starting TPN in the PICC line. The TPN (total parenteral nutrition) will hopefully give him an increase in energy at the same time the sedation effects continue to subside. According to his labs, incisions, and everything else, the doctors are very happy with how everything is looking and responding.
We also got to FaceTime Colten’s older brothers and Dad today (Sophia was already sleeping)… Colten and I haven’t seen or talked to them since Tuesday morning at school drop-off, so we all missed each other. It was great to see and hear them, but it definitely made Colten sad. He continues to tell me multiple times a day, “I want to go home.” It’s a good thing kids that age don’t have a strong sense of time. I’m using his desire to go home to urge him to move his body more… “If you want to go home, we have to start moving around more. We have to sit up, go in the wheelchair, start standing and walking…” Hopeful he continues to progress in the right direction!
Now I’m off to snuggle, even though he didn’t ask me to yet 😉