Two things that don’t belong together: colonoscopies and wheelchairs
Incompatible. Two things couldn’t go worse together. In the moment, it felt like living hell. When we finally left the hospital, I felt like Supermom leaving with her Superson.
Dunky has been dealing with GI issues for the better part of the last 18 months. We slowly tried to figure it out, but GI issues are hard to diagnose and resolve. We’ve done multiple x-rays, stool samples, seen specialists, to no avail. Then school started and with Dunky now using his power wheelchair and a hoyer lift to get on the toilet, we started being more aggressive with finding answers. When you have to get on the toilet anywhere from 5 - 10 times a day, you start to realize you are spending much of your day there and that’s no way to spend a day!
We were recommended that Dunky does a “clean out” and then see how he does. If he did not improve, we would need to do another “clean out” so that a colonoscopy and endoscopy could be performed. I kindly suggested we just do the “clean out” with the procedures as I was not willing to go through that twice. They did not push back.
The next few days were figuring out how soon we could do this and how we would do it. For those that have been through a prep for a colonoscopy, you know it was a struggle to get the prep drinks down in order to execute the “clean out.” Through conversations it was determined Dunky would be admitted so that he could have an NG tube (feeding tube) so that the prep meds could be sent directly into his stomach vs hoping he would comply with drinking the large amounts of disgusting liquid.
Dunky had his last meal (Starbucks) on Tuesday morning at about 8:30 am as we were to check in at the hospital at 10:30 am. We were prompt, but they were not. We finally got to our room around noon.
Dunky was anxious and excited. I think he was anxious because he didn’t exactly know what to expect, but excited because he felt like crap and knew this might make him feel better. He was sick and tired of waking up in the middle of the night, sometimes multiple times, to go to the bathroom. And Dan and I shared that sentiment. These middle of the night calls required both of us as there was no time for hoyer lifts and getting into the accessible bathroom. Instead, it was both of us on deck with a bed side commode and then we waited. I usually crawled into Dunky’s bed (he absolutely has the most epic bed of all time) and Dan would venture out to the couch. It was never a quick task. Sometimes we waited 15 minutes, sometimes more than 30. Exhausting. And then we went back to bed with our fingers crossed it wouldn’t happen again until the morning.
Dunky also started to recognize our exhaustion and frustration. Sometimes we were just tired, other times we were annoyed when he couldn’t go. He would apologize over and over and then in that cute little Dunky voice with the cute little Dunky face say, “Mommy, you feel bad for me don’t you?” Oh buddy. Yes, I do. No one would wish Duchenne mixed with excessive toilet needs upon anyone. In fact no one would wish even one of those independently.
Now it is 3:30 and Dunky has an IV and that’s it.
I realize I have high expectations, but what I think are bare minimums of a hospital stay were not happening. The commode hadn’t shown up, the hoyer lift hadn’t shown up, no one asked if Dunky wanted water, juice or popsicles, no one asked if he wanted a warm blanket and no one gave us any updates as to why the heck we were told to be there at 10:30 but yet nothing had happened. I started to voice my frustration and I’m not sure it helped or not but things then started moving. The commode finally showed up but had I of known it would be such a crap one, I would have showed up with my own. There were no drop arms making it extremely difficult to get him in and out and just a bar for a back, nothing to lean against. Sounds like no big deal, but when you have to live on that thing for a day with Duchenne, it is. Dunky got his NG tube and was completely unimpressed with that whole process and the fact that it was then staying there for hours, many hours. We finally got orange popsicles because I asked again, the juice we also asked for never came. Then we finally got “materials” to help us through the night. It was so odd, it was almost like since I was a capable mom, they stuck us in the corner room and figured we were fine unless I spoke up.
Around 6:30pm we finally started the Go Lightly through his NG tube. He was so cute with the nurses. Every time they came in and did something he would ask if he got the poop medicine yet. Once they finally said they just started it, he instantly said he had to go. We laughed and said it doesn’t work that fast, but within 30 minutes, his ask was real.
And so it began. He basically lived on the bedside commode. He would ask to move to the bed but the minute I would get him up in the air with the hoyer lift, he would say, “nope, nevermind, put me back down.” It went like this for 4 hours. When I finally got him into bed and we would both try to shut our eyes, it was an unpleasant awakening usually less than 30 minutes later.
I remember laying on the pull out couch with tears in my eyes thinking, how is this real? Pulling an all nighter without the fun attached, waiting to be summoned to lift 115 lbs of dead weight onto a commode because there was no time for a hoyer lift, and changing the bed while he waited on the potty. Repeat. Repeat. Repeat. Literally hell.
The next day he was scheduled for a colonoscopy and endoscopy at 1:45 pm. At one point we were told to stop drinking all liquids at 10 am. I pushed back and that only to find out it was only “in case he could go early.” Sorry, not making my child go through more hell to accommodate a “maybe he can get in early.” So he stopped at 11:30 am. We were not brought down into pre-op until 4:30! Poor dude was empty and running on fumes but he was hilarious. He was amazed that his entire bed could fit in the elevator. He had so many inquisitive questions about “things going in his rectal area” to which we all giggled a bit and they answered with such dignity. His pre-anesthesia drugs had us all cracking up as he started some dance moves.
During his procedure, I got to just chill in the waiting room for the first time since we got there. I prayed, I read, I slept. Then I overheard a surgeon talking to a family about a large tumor in a little girl’s brain that had to be fully removed to prevent it from growing back but was unsure what her cognitive ability would be if she were to survive this difficult surgery. A few tears streamed down my face and I was all the sudden feeling blessed. It didn’t feel like it could get worse, but that was proof, it could be worse.
We are always very careful when either of the boys have to go under anesthesia. It requires stopping certain heart meds, confirming that the anesthesiologist knows he has Duchenne which takes some of the “sleeping meds” off the table, ensuring they have the positioning cart available for when he’s asleep as his natural position looks different than others, asking the team how they will transfer onto the OR bed given the brittle bones that can easily fracture. We do everything we can to set the procedures up for success. And, Dunky did awesome.
We skipped the post-op room and went right back to our hospital room as when he finally came to, the first thing he said was, “I gotta poop.” There was no time to waste, I picked him up out of that bed and set him on the potty with about 5 people watching, unsure how to help. And that’s when I was told I was the Supermom. I felt proud, but more proud of little Dunky, the Superson.
We were discharged late that night and Dunky was happy to be reunited with Kitty. He was also happy to be back in his own bed with his own squishy-seated commode.
The results of the biopsies showed gastritis and colitis (basically inflammation), but nothing else more serious. They just showed up in our portal, no one called to talk through them with me or to schedule a follow-up clinic appointment so we can make a plan going forward. Disappointing, but not surprising. I finally called so we now have a follow-up on 10/20, because it would be too much to ask to just talk with Dunky’s doctor vs waiting weeks for an appointment. Life with Duchenne is hard, I sure wish our healthcare system could make things easier.
Cheers to my Superson, Dunky, and hope for less time on the potty going forward!