It’s not that I believe in God really, or maybe I don’t believe in a God anymore, and I certainly don’t believe in the devil, or the notion of heaven and hell. The last three years proved to me that people aren’t punished because they are bad people, but rather randomly like a never ending game of Russian Roulette they never elected to play. But I find myself using this expression a lot lately, since we’ve been here at the RIC. The idea of preferring the devil I know versus the unknown. Like those people on Let’s Make a Deal, choosing to hold onto what they have in their hand instead of taking a risk on what’s behind curtain number 3, getting to go home with a $1000 instead of a collection of miniature stuffed hedgehogs.
My first night here I honestly didn’t know what to expect. I certainly didn’t expect that after I fell asleep around 9:45, that someone would be in my room four times to check on our roommate, Kayla. Obviously I never expected Kayla at all. The next morning the psychologist was one of the first people I spoke with and I asked her about the frequent visits to my roommate in the middle of the night, can they be quieter, what can be done. I really just thought I was asking questions, looking for solutions, and didn’t realize I had opened up a can of who knows what. Later that day I was practically accosted by a PCT, Patient Care Technician, about what they could do differently to care for Kayla in the room. She was helping me come up with good solutions but it was clear she was angry and felt insulted even though she wasn’t the one that had been working that night. Next came the nurse manager asking me about switching rooms, switching the side of the room, and she let me know she’d come to me later when she had an opening in another room and we could make our decision then.
But in many ways Kayla was the perfect roommate. Aleck’s nap schedule clearly didn’t have any affect on her as she naps often during the day, and since she’s from so far south in the state most of her visitors were late afternoon or on the weekends, and total sweethearts. Her friends, when there during naptimes, were very sweet and considerate, clearly going through such a hard time, but traveling by numerous trains to show their support. No family was staying with her so we had the run of the bathroom and the second sink which was perfect for washing out bottles and baby spoons, and if he was having a rough evening there were no complaints on her end. And even though her nighttime schedule guaranteed we never got a good night sleep, and the smells of the diaper changes would linger in the room for almost an hour, even though the PCTs would leave her washcloths all over the shower floor along with 5 bars of open soap scattered throughout the bathroom and outside sink areas, we had gotten used to all of it. She was our roommate and we took some pride in the room being our room, keeping an eye out for Kayla when she had been neglected, turning off her tv when she had fallen asleep, and asking for help when she was on the verge of falling out of her bed. At some point here we switched sides of the room, which left me wracked with guilt now that we snagged the sweet window seat, and it took me a full 3 days to adjust, but in the end being up against the windows with the view of the lake was what we needed every morning to start our day off right. Aleck enjoying his morning bottle in my lap while we watched the sunrise over the city. Our situation wasn’t perfect, but it was working, we were adapting. When the nursing manager did come to me with a potential new room we turned it down, knowing full well that we had acclimated nicely and had come to embrace the ups and downs of our roommate, after all, who knows what things could be like with a new roommate and all of their needs.
So you can imagine my dismay when yesterday, 4 nights before our release, we were told we had to switch rooms. It wasn’t a choice but rather a necessity since they had a girl who had to be admitted and there weren’t any rooms with a bed that had another girl in there. Our new room was going to be great. One of the top rooms on the floor with south and east facing windows. A much larger room than the one we had been in and our roommate we had already met. Paul* is a sweetheart from a nearby suburb who’s mom had already been chatting with me for days in the dinning room. One night she heard me telling Craig he forgot the baby spoons and brought us some of her own from home. Her son was in a car accident. which is what brings about half of these kids here, and thankfully he was in a car unlike my old roommate. His brain is fully his, his body is partly his, but he’s lost a lot of movement and capabilities. He’s a super sweet guy, around 20 years old, and I thought to myself, this won’t be so bad. I mean, it’s not like I had a choice. Given the choice I definitely would have stayed with the devil we already knew.
The first night in our new room was miserable. The PCT left Paul in a position where he felt vulnerable and helpless, causing him to ring his nurse button over and over begging someone for help. This was followed by a panic phone call to his mom begging her to come to the hospital immediately. I tried to help the best I could, hit my button as well and then asked the current staff if they new what had happened as they weren’t the ones who were on when he fell asleep in that position. This all began at midnight, an hour and a half after I fell asleep, and went on until about 1:30am. I finally fell back asleep around 1:45 to be awoken at 3:45 by Aleck’s feeding machine beeping because of a flow issue. Then at 4:30am the team came in to deal with Paul, take his vitals, and put him in a different position. Beeping machines and overhead lights, a much more intrusive late night visit than any of the late nights we had with Kayla. Finally at about 5:15am Aleck’s feeding machine beeped again signaling the end of his feed, I had to hit the nurse button, and woke up to our night nurse disconnecting him and turning everything off. And somewhere in there, I honestly couldn’t tell you when, Aleck woke up and had to be soothed back down to sleep. When my alarm went off at 6:30 ( I reset it at 4:35 knowing my usual 6am wake-up was just not an option), I honestly didn’t think I could get through the next hour let alone the entire day. It was the worst night we had here so far. I woke up missing our cramped old room and our roommate, hoping her new roommate was looking after her.
The same type of thinking keeps popping into my head as we meet and get to know the other families here on the peds floor. For the most part all of the patients here can be divided into three categories. There are the patients who were in an accident, most of them car accidents, which is definitely having an affect on my driving and even on my behavior as a pedestrian. These patients run the gamut from looking just fine, but working on relearning to use some muscles, to my old roommate and few others on the floor, who make you wonder if they will ever be an independent functioning person again. Then there are the patients who suddenly became sick, usually a life threatening illness, like a teenage boy fighting leukemia, a toddler who’s flu virus started to eat her brain, or the almost club of girls here who were walking around fine one minute then suffered a stroke or brain aneurism the next. What’s so hard about these two types of families, is that most of their children will never be the same again, and not for the better. They will have to learn to accept this new version of their offspring and adapt accordingly whether it’s moving to be closer to the services here, remodeling their house for their now disabled child, or just generally accepting that the son or daughter they’ve known all their lives is just a totally different person.
I remember when Aleck was born, our good friend who is a pediatric orthopedist, explained to me that in a way we were very lucky having Aleck born with all his difficulties instead of being surprised when they popped up later in life. This way our Aleck is the only Aleck we know. His disorder and issues surrounding it are already our normal, and truly there’s a good chance we will only make progress in his mobility, and not the other way around. We are part of the third type of family here; the families who’s children were born with their issues like Cerebral Palsy, missing chromosomes, thyroid deficiencies. These are the families that have been working on their children’s issues for their entire lives. The families who are used to PT, OT, and all the terms that go with it. We know that if our children are here, for the most part it’s because of a surgery that will help improve their quality of life, therefore the chance is great that we will leave here better off than we were before, something that most of the families here can’t say. It’s all just another reminder of how lucky we are in our battle with AMC (Arthrogryposis Multiplex Congenita), and as long as we can keep Aleck safe we’ll take this devil over any of the other ones any day of the week.
But we still have the unknown to deal with and the food/weight battle continues to weigh us down. The NG tube, the feeding tube that went up Aleck’s nose and down into his tummy wasn’t being used effectively so we decided to discontinue it. We were having a hard time with the scheduling of the tube feeds so they wouldn’t interfere with his oral feeds, since keeping Aleck interested in eating food will always be a top priority. And since he has such a propensity to puke, we had a hard time regulating how much he would take and have ended up with entire tube feeds winding up on the floor of our room, if not in my hair, on my shoes, and all over Craig. So we cut the feeds down to such a small amount it hasn’t been making much of a difference so it was time to try something new. After Aleck’s 12 month check-up with his pediatrician, and seeing how little (if at all) his head had grown, the doctor felt strongly we needed to switch to the NJ tube, a nose to jejunum (small intestine) so we can do a constant feeding at night without vomiting or acid reflux. Yes, he understands Aleck may be small, his condition makes him small, his genetics make him small (not from me, clearly, that’s Craig’s side of the family, they were all itty bitty babies), but we don’t want to add the constant concern that his brain isn’t growing properly to our list of issues surrounding Aleck’s development. However, the NJ tube doesn’t seem to be the solution either. Despite his lack of arm mobility Aleck has figured out how to pull this sucker out, rubbing his face into his crib mattress, tearing off the tape resulting in the tube inching out of his nose and possibly out of his jejunum. I’ve spoken with his pediatrician and he’s going to consult with some surgeons and get back to me. This fight we are waging with his lack of weight gain and calorie intake is our true devil at the moment and I really hope that we get this under control so we can go back to focusing on his mobility.