If you’re a parent, you may remember that feeling of arriving home from the hospital, putting baby in his/her car seat down in the middle of the room, and realising, Shit, I’ve got to keep this thing alive. With Benjamin, that’s an experience that happens over and over again.
The more hospital stays he has, and the longer they last, the more I get used to relying on the medical staff to keep track of his feeds, measure out his medications, monitor his temperature. I start to depend on his sats monitor to tell me if anything’s wrong, to let him lie around in his vest because I know it’s warm on the ward and his temperature is being checked hourly.
When we are discharged, late in the day, with an hour’s journey ahead of us and a whole family to feed and put to bed, I’m terrified I’ll forget something, miss something, or make a mistake. After each admission I have to get my head around new medications, changed doses, a new feeding regime, and a barely-recovered child.
This time, having been discharged once only to be readmitted for another fortnight, I had even more fears than usual. Normally I’m desperate to get out but this time I refused to take Benjamin home until he’d gone 48 hours without vomiting – which he very nearly managed a few times before vomiting at the 47th hour. When he finally did, acknowledging that I’d likely be just as nervous no matter when we took him home, I agreed to face it sooner rather than later.
The first feed back at home, he vomited straight back at us. The terror started to tug at my throat: it was happening again. He’d end up dehydrated, unresponsive, swollen, on a drip, maybe worse. After a month in hospital, stretching our family to breaking point, I couldn’t bear the thought that we might have to go back.
For two days we struggled as he vomited back more than half of his daytime feeds. I barely slept in case he was sick in the night. I spent an hour over each feed, trying to slip the milk down slowly without his stomach registering it, then an hour hovering over him … then an hour cleaning up. I approached each feed with trepidation, stomach churning, hospital bags ready by the door.
I feel like I always make the wrong decisions, especially when I have to balance the needs of the rest of the family, the disruption it causes the girls when Benjamin is in hospital. I rush my kids to the doctor only to be sent away with a flea in my ear and a note on file: ‘over-anxious mother,’ yet I carry on at home when we really should be on our way to A&E. I long for an objective observer to tell me what to do; but no-one knows Benjamin as well as me. Ultimately it has to be my call.
Thankfully, this time we had a halfway house – our wonderful children’s hospice, where we were due to go for a weekend break. I had been desperately looking forward to this as a chance to rest and be spoiled; now it became a place of safety too, somewhere with trained medical staff to share the responsibility and the decisions. I vacillated up until the moment we were due to leave. I phoned the hospital. I phoned the hospice. I packed, unpacked and repacked. I spent the journey phoning our dietician (I wasn’t driving). I fully expected to have one cup of tea and be sent packing to the Sick Kids.
But for once, it was the right call. For once, instead of getting worse, Benjy started to get better. In fact he pulled the usual stunt that he pulls at Rachel House, of sleeping all night and being no trouble to anybody so that I felt a complete fraud even being there!
The main factor in Benjamin’s turnaround was a step backwards, a step further away from ‘normal’ and closer to ‘medicalised’: we switched his feeds from three ‘meals’ a day to one long, continuous feed using a pump. It was at my request and I think it was another good, though dispiriting, call. I’ve been here before: I recognise that feeling of relief tinged with disappointment from when we finally gave in to tube-feeding instead of bottles. Now, it’s relief that Benjamin is getting the nutrients he needs and keeping them down, that he can stay at home with us and away from the monitors and needles; and disappointment that he no longer experiences breakfast, lunch and dinner like the rest of us, that he’s hooked up to a tube day and night, harder to cuddle, harder to play with.
But that’s a small price to pay, and it may yet be only a temporary one. Benjamin’s still not well; he’s tired, he’s flat, he’s pale and he’s sore; there’s a long road of appointments and interventions ahead of us to work out exactly what went so wrong over the past month and how we can rectify it, but for now we’ve found a way to manage it and to keep him at home where he belongs. The gnawing panic in my stomach is – slowly – ebbing away. The responsibility is firmly back with me, but I can handle it.