We laid together on a gym mat—the primary colored kind that you’d find at a kiddie gym—and ended our day just as we’d began: singing and smiling. I shushed and sang to drown out our roommates’ phone calls and conversations. But, as soon as the keppra kicked in, he was down for the count.
We spent most of our day on that mat, eating, chatting, playing and most recently, falling asleep together. Tethering a two year old to a video EEG machine, IVs and a monitor, demands creative use of time and space. We survived the toughest part of our stay (I think) and it certainly hasn’t been easy.
Josh started the day by singing; though still asleep, he had some melodic chant going on. And just by that, I knew today was going to be much better than yesterday.
The first time I checked the time, my eyes were still sore. The hum of the machines could be heard, and the night nurses were the only ones stirring at 4:30 am.
I dozed off for another few minutes, perking up when I heard his sweet voice. No words, just Josh gibberish, as if he was dreaming and singing. His hand peeked out of the slats of the metal crib. Naturally, I held his hand, hoping he’d open his eyes to see me at his bedside.
As he opened his eyes, he looked around and was decidedly confused. Machines, crazy bubble crib, awkward head wrap: we were definitely not at home. He woke up with so much energy and quickly decided he was ready to jump out of his crib. Determined, feisty, vocal: Josh was back, at 5am, no less.
After spending all of yesterday in between seizures and in a postiscal state, Josh barely moved out of a hospital bed, never mind eat a meal. Thankfully, he was being nourished via IV, but still, for a growing boy, you still need your carbs.
Josh’s first plan of business was eating half a loaf of his favorite raisin bread. When Jeff brought along snacks, I was all like, WTF did he bring this bread. As usual, he was on to something and the bread was a great decision. Since Josh woke up so early, his hospital breakfast never arrived until 9 am, which was 2 hours two late for my starved boy. To satisfy his appetite, I gave him his bread as we watched morning cartoons. One piece of bread turned into 5 and 5 turned into half of a loaf.
My boy was hungry! He went through almost a dozen juice boxes as well. The Dilantin makes him extra thirsty, hence the surplus of juice.
He didn’t have many tests today, just a blood test where he had to have blood drawn on his “good” arm. The poor kid has his IV’ed arm strapped to a board and netted and taped together, and he still had to have blood drawn. Nevertheless, he resisted as soon as he saw the bright blue tourniquet. The phlebotomist was able to draw the one vial she needed, but as soon as she pulled the needle from his vein, Josh was fast asleep. I’d never seen him do anything like this before. One minute he was screaming and kicking, and the next, he was asleep. My totally unprofessional medical guess? Josh’s body wanted to slip into a seizure following the distress, but the Dilantin (medicine) kicked in, and instead pushed him to sleep. This epilepsy stuff is cray, I tell you.
Josh slept for a good 30 minutes after that blood drawing power nap. It wasn’t even lunch yet and the poor tethered kid and I had run out of things to do. Mind you, there were plenty of toys and movies and games to play in the playroom, but that would mean disconnecting Josh from his monitors that were studying his brainwaves.
Even though the “child life specialists” weren’t in the hospital, possibly due to this mega storm that was going on, our nurse set up the gym mat with a bucket of toys. To Josh’s delight, he was occupied for a good hour or so, until he deemed these toys no longer interesting. By lunch time, we’d FaceTimed daddy and Jack at least 5 times, read books, thrown UNO cards all over our room, dumped toys on the playmat, ate a half a loaf of raisin bread and watched shows. Boredom had set in.
Lucky for me, Josh fell asleep on the mat after taking his meds and we both napped for a good two hours. We woke up to the news that Daddy and Jack had arrived. Much to my chagrin, Jack and Jeff made the 10 mile trek in our non-4wd car, trudging through the snow and barely-paved highways.
Our friends offered to drive us in their 4wd vehicles, but my pessimist-realist self told Jeff to stay home, rather than risk anyone getting to an accident on the awful roads.
They made it here safely, and things couldn’t have been more perfect, now that my family was together again.
At 7am, I received a call from Jack, who took it upon himself to call to tell me how much he misses us. My already anxious 6 year old is being tasked with coping yet another hospital stay for his brother and separation of our family. His early morning tears were totally validated, though I wish there was more I could do than verbally assure him that everything was going to be ok. Josh’s illness and ongoing issues take a toll not only on him as a patient, but the entire family. So, even though the hospital has a strict no visitors under 18 rule in effect for flu season, we smuggled Jack in. The smiles were worth every effort in getting us here.
We enjoyed a good 2 hours together. Despite our exhaustion and the tight space, we seemed to make the most of what we had: that gym mat saved the day. The boys played with action figures and rolling bugs, while I could actually freshen up in the bathroom without having to worry about Josh jumping out of the crib.
Unlike our first hospital stay at the smaller hospital by our home, the nurses here seem spread thin and less accessible. I’m not sure if it’s because he’s older now, but when Josh was an infant, the nurses seemed more hands on. The first time around, they even administered meds orally. Here, they ask me to do it. I have no problem caring for my own kid, obviously, but it’s disconcerting when a nurse doesn’t even answer the nurse call button. I’m so appreciative of their hard work in helping Josh to get better, I just find it interesting how things are so different here.
As I’m ready for bed, it turns out, Josh needs to have his IV needle re-inserted. It’s 10pm and he’s been asleep for two hours, yet he’ll be pricked in the worst way. Unfortunately, this isn’t how we started our day, so I’m disheartened he has to end it in such an upsetting note. It’s taking 3 nurses to restrain him and get the IV in. My poor sweet baby. My poor sweet boy.