We’ve been living at the hospital for 19 days now.
The day starts early, we’re usually up at around 6:00 or 6:30 in order to catch the doctors on morning rounds, but as we’re still in the “constant obs” room, this means there’s nowhere for us to sleep next to Gavin. I’ve learned to trust in the nurses to watch him in the night, and I only pop my head in once or twice after he’s gone to sleep to make sure he’s okay. Neither Craig nor I can bring ourselves to sleep in “THE CHAIR” next to his bed as that instrument of torture did us in within the first couple of days.
We were lucky to hold onto the private room they gave us for about five days after Gavin went back in the group room, so at least there was a bed to sleep in, a bit squishy for two so Craig ended up on the floor most nights. After we got evicted though, we had to find other digs. Craig’s now been back at work for three days, so I insisted that he sleep around the corner at Lauren’s place, and I had to play littlest hobo, carting my blanket and pillow around the hospital looking for a decent spot to curl up.
A lot of parents sleep in the surgical waiting room or the CCU waiting room, but you can’t always count on people being quiet in there if they’re waiting for their kid to come out of a late-night surgery. The last two nights I went down there to find hordes of people talking on phones and not looking sleepy, so I ended up on one of the benches in the hall near Gavin’s room. I just thought to myself, I’ve slept in worse places, hammocks, the ground, floors, park benches, buses in India, etc. Anyway, with a sleep mask and pillow anything can be comfortable and I slept fine. BUT Craig is staying there tonight and I get to sleep in a bed, hurrah!
Caring for a toddler requires ten hands and lightning-quick reactions. Caring for a toddler in hospital requires those things, plus eyes in the back of your head and limitless patience. I perch next to Gavin’s bed, hawk-like, making sure he’s not trying to pull out one of the three tubes that is attached to his body, scratch his incision, or rip off the probe that monitors his heart rate and oxygen levels.
We’ve been watching a lot of DVDs. I mean, the same DVDs over and over as he won’t watch anything new. Only the familiar and comfortable is okay right now. Fine. Except that he gets bored within minutes and then wants me to change the episode, or fast-forward or change the DVD, which all involves getting up every three minutes. Sigh. He’s also going through a very itchy phase with his incision and wants me to stand next to him, scratching his head and ears for hours on end.
Although I’ve been enjoying my new role as Principal Head-Scratcher, there are a lot of other tasks we have to take care of, and an endless parade of people who stream by Gavin’s bed to check in every day. Neurosurgery, neurology, thrombosis, oncology, speech, physio, occupational therapists, dieticians, ENT, nurse practitioners, child life, bloodwork and others I can’t remember. It’s hard to have conversations with these people when Gavin immediately kicks up a fuss that strangers are now standing around his bed, clearly there to do some nefarious deed. Unfortunately, most of the time he’s right. I’ve taken to asking people to just stand back from the bed about five feet. I’m learning not to care about being nice or polite, I’m telling people to shush when they need to be quiet and I’m challenging people when they need to be challenged.
Living at the hospital is not fun, but I’m refusing to even think about feeling sorry for myself and am just trying to be practical and get on with it. When I escape for a couple of hours and breathe the normal air of the outside world, it’s so hard to go back, but anxiety builds the whole time that I’m gone, and I have to hurry back, convinced something terrible has happened in my absence.