Let me ask you a question, when you go for a hike, or a walk, or a run, or maybe even a swim in open water, do you think about the trip back? Do you save some gas in your energy tank to bring you back home or do you push yourself to the limit? I tend to save gas, maybe to a fault. Blame it on my childhood asthma maybe, I’m always a little conservative. Derek, on the other hand, is an all out kind of guy. He pushes himself to the brink and in some situations ends up hobbling home. Maybe it’s just my perspective, maybe he pushes me to the brink, but he’s secretly got a reserve tank that he knows will get him back to the car, shore, or house. This little thought experiment is going to make sense eventually, so stick with me.
I wrote a little about Derek’s pain the other day. He initially thought it was a UTI, that test came back negative. The doctors did a CT scan to rule out anything severe, and the scan came back clear. But still, the pain persisted. His nurse Saturday morning gave him an IV medication, it was fast acting and suddenly Derek felt some relief. Starskee and I arrived midday with hot dogs and curly fries from Spike’s Junkyard Dogs, a favorite of Derek and mine from our Providence days. His LICSW told him to eat for pleasure, and I thought a hot dog might do the trick. When we got to his room he was just finishing his daily personal hygiene tasks. His nurse was there, his parents were there, hot dogs were there. His nurse left and seconds later, a crisis. He had inadvertently yanked the majority of his feed tube out. Crap, crap, crap. They had just put it in, given him an x-ray to make sure it was in place and in his efforts to get himself put together, he had pulled it most of the way out. “Get the nurse.” I moved faster than I’ve moved in three weeks. I got to the door, made it to the hallway, and then I broke into a sprint. Uh. I should not have done that. I ran, and it was ok, but I felt it and it felt wrong. I caught his nurse as she was rounding the corner and told her to come back quick.
She surveyed the situation and decided not to pull it out the rest of the way, instead, she got the doctor on call. We cleared the room of everyone but Derek and me. The doctor came in, took a look, and said, “Hey. Well. Let’s just try to feed it back in, it might not work, but if you’re game, I am.” Of course, Derek was game. It went back in, and the doctor seemed pleased. However, reinsertion of feeding tube means another x-ray. Drat. We waited, the mobile x-ray techs came, booted me out of the room, and got to work. Unfortunately that meant laying Derek flat on his back. This is not comfortable for people who have recently had their insides rearranged. It happened relatively quickly, the techs left and Derek and I were alone. “I’m hungry buddy, I think I’m going to eat this hot dog.” He looked at me and said, “Yeah. I’m hungry too.” We sat across from each other and slowly and methodically ate our hot dogs. Derek even ate some of the curly fries. Things were looking up.
Gregg stopped by and brought some snacks and Derek had a few. The appetite stimulant they gave him might have been the reason, or he might just be getting it back because of the diminished pain. We all sat around and chatted. Then, around 5pm, the lingering pain he’s been dealing with began to creep back in to the picture. He called for meds. He curled up in the only position that gives him any relief these days, a cross between child’s pose and the fetal position. It started to get worse. I watched him bite the fabric of his johnnie. I watched him wriggle around on the bed trying to find a position that felt ok. We talked about the pain, where it was, when it hurt most, what it reminded him of. We postulated that it was probably a muscle strain, that while I had been relying on my lower back muscles to compensate for the loss of core strength, he was relying on the lower abdominal muscles to get into and out of bed, and these same muscles were being used when he went to the bathroom. Maybe the muscle was cramping up at times, maybe it was a spasm, maybe he had torn it. We like to solve puzzles, and we were both keen on solving this one. Then the pain became too much. The Oxy wasn’t touching it.
We called his nurse in and she could see he was in pain and he told her it was approaching 10. She administered more of the medicine he had been given earlier in the morning and she and I discussed the different things that Derek and I had talked about. She puzzled over it too. We all were in agreement: it’s got to be muscle strain. Derek was on his back at this point and really wanted to shift up higher in the bed, but didn’t want to put any more strain on the already sore muscle. His nurse offered to try and take some of his weight by lifting up on the bed sheet beneath him. I tried to help, like an idiot, but luckily, this was the same nurse that discharged me from the hospital and she admonished me quickly. I realized my error, and stepped back; I would have seriously hurt myself. Meanwhile the brief attempt to move him sent Derek over the edge. He was broken. Sobbing in the bed from the pain, his nurse held one hand while I held the other, tears streaming down my cheeks, the nurse and I whispering to him gently, to please try to breathe, it’s ok to cry, but just breathe. He made his way back to us, and the nurse and I began working together, she got him a cool wash cloth for his forehead while I held his hand. She looked at me and mouthed, “I’m going to get the doctor, he should not be in this much pain.”
She slipped out, and Derek began to relax slightly, the medication she’d injected into his IV was beginning to work. He reached up with his arms and grabbed the side rails of his bed and slid up the bed incrementally. The doctor came in soon after, the same young man that had deftly reinserted his feed tube. He touched Derek’s abdomen where it hurt, asked him a few questions about the medications and which ones seemed to be working. Then he said, “The medication [I forget what the name is] we’re giving you right now is essentially just intravenous ibuprofen. It’s an anti-inflammatory. It may seem counterintuitive, but the best relief for muscle strain is to slowly work on that muscle. What we need to do is get the pain managed so you can get up and walk around. That’s what will heal the muscle. I’ll make sure I reorder the scrip for these IV meds.”
Good gravy was that helpful. It made so much sense that he wasn’t being given magic medicine, but rather an anti-inflammatory, which would of course keep the muscle feeling better. There are side effects for ibuprofen for a guy in his situation, but they will keep an eye on him to make sure he is doing ok. When we left, his plan was to gingerly get up out of bed and go for a walk with his nurse. Knowing why you’re in pain, and knowing that there is a way to fix it, even if it takes a while, goes a long way towards relief.
Back to the thought experiment from the beginning of this way too long post. If you knew you were going to be in the hospital for the long haul, would you aggressively try to get back to your regular routine, or would you very slowly and methodically test out your limits? I think some of you would take the aggressive route and some of you would start out slow, making sure you saved some energy for later. Derek, from the beginning, has been a super active patient. He was practically bounding down the hall to see me after the operation when I was still tentatively getting in and out of bed. One night, after his second surgery, I got up out of bed around midnight to deliver him a card and try and work some of my own kinks out. I made it to his room and snuck in to find him asleep, sitting up, legs pulled up nearly to his chest. I stared at him a while. It looked so comfortable, but how was he doing it? Today, when he was folded into thirds in the only comfortable position he’s been able to find, I cocked my head to the side, and stared in wonder. I have not come close to that position. Maybe I am saving a little for later, slowly ticking away at my recovery, gently trying to move the way I used to. I slip up, I proved that today, I ran when I shouldn’t have and I tried to help lift my husband. The things we do for love.
Before I left, I sat on his bed and we held each other’s hands and just cried. “We knew this would be hard,” he said. “I just never thought it would be this hard.” I smiled and cried, and squeezed his hand a little harder, nodding in agreement. “But we can do this. I’m ready. You’re ready.” I’m definitely ready. I’m ready for the trip back, right now. I want to get to the part where healing is the focus, not the next surgery. I know Derek does too. We both slipped a little today, our steely resolves buckled under the pressure of the pain of unknown origin. We rebounded and managed to get the nurse, the nurse’s assistant and Starskee to laugh at something stupid we said. A little husband and wife comedy routine. We make a good team, you know? Derek goes all out, helping us both reach the summit with his strength and encouragement and I always try to keep just a little in reserve, to help guide us home.