Dispatches from Ward 41

Though we’ve been assured that this is a simple surgery, there is still risk involved. Infection, complication, the psychic trauma of seeing your healthy child with a feeding tube and an oxygen tank. On the night before, Moira has already made a name for herself: “Go see the little redhead baby in bed 25 if you need cheering up or a cuddle. That’s a cheeky one.” The surgeon explains the procedure again but with a new wrinkle: if the hole in her diaphragm is especially big, they will patch it with Gore-Tex. Neither of us can help but crack up at the idea, since we associate Gore-Tex with inclement-weather jackets; if there’s a sudden rainstorm in Moira’s lungs, everything under will stay dry.

Private rooms don’t exist on this ward; at least, not for children in Moira’s condition. The last thing you want in an NHS hospital is to NEED a private room. All the evidence I need to draw that conclusion is in the room across from our curtained bedchamber, receiving chemotherapy in germ-proof seclusion at the ripe age of 24 months. I feel ashamed of my terror and fear; this is so simple to fix, and we can go home and never think about it again. What a luxury! And I’m further ashamed when I get annoyed by the noise on the floor–a baby has been screaming for a long time, distracting Moira from settling down. Who am I to be irritated by a little noise? That’s a child in pain or scared, and parents in agony listening. Later, we will be put next to a boy who is never going to get better. Not ever, and he’s been in the hospital since January. Again, we know what’s wrong and how to fix it. What an amazing luxury.

“A parent can stay overnight, but not both of you.” That’s news to us. Nowhere in the info packet did it say that we were limited to one parent on the ward. I set up the folding bed next to Moira’s with Tom’s help while he frets about when to come back in the morning. The nurse who gave him the bad news is busy and distracted, so I motion to the family comfort/kitchen room. “Just keep a low profile and stay in there. Nobody is going to kick you out unless you make trouble.” That lasts fifteen minutes before a sturdy nurse informs him “You don’t need to leave this second, and come back any time, and sorry it’s so arbitrary, but you can’t stay overnight.” We pick 5am as his return time–that’s the cutoff for breastmilk feeding before anesthesia at 9am, after which we know Moira simply won’t allow me to console her if I have to refuse to give her favorite comfort. Tom can give her water until 7am.

Moira struggles when they hold the mask to her face, but this is easier than trying to install an IV while she’s awake. When she finally goes under a minute or so later, I whisper in her ear a few lines from her book. Moira’s book. “Only sleep for a while, for I shall miss my wild child–my wild child called Autumn.”

Under the doctor’s advice we take a walk to the mall during the surgery. We load up on fatty comforts and free wifi at McDonalds, and then go to the DVD store and a Poundland. We fill bags up with children’s movies and loads of toys and extra batteries to donate to the children’s ward play room, as if a positive surgical outcome could be bartered with enough AA batteries and picture books. An hour after we were told it would be over–not long enough to be unreasonable but still long enough to make me nervous–we are summoned back to the ward. The surgery was a straightforward smashing success. No Gore-Tex required.

She sleeps hard the next 20 or so hours. When she’s awake she’s obviously not feeling well but also clearly not in real pain. Fasting has gone from 5am before the surgery and anticipated to continue through 8am the next day. At 2am on Tuesday I have to summon a nurse to get a breast pump and produce 12oz in 15 minutes. I send it home with tom the next day to freeze. One nice thing about being a breastfeeding mother is that the NHS will feed me too–all the wilted bananas in the snack room and hot omelette lunch I can stomach. Moira won’t be allowed anything but milk until we leave. She doesn’t even ask to nurse in the beginning. She only wakes every few hours or so and whimpers until I rub her back, and goes back to sleeping the stone-still sleep of the drugged.

The next three days pass in a blur. They come for my bed at 8:30am, long before I’m actually done needing it. The first day I asked Tom to bring a camping pad with him because there’s nowhere for me to lie down. Moira improves at an exponential pace. It’s awful to see her with cords coming off of her–one in her back for the epidural, one in her foot for IV fluids, a monitor on her other foot, and an extra port in her hand just in case of…something. I ask for it to come out along with her fluid drip, only to have them need to numb her foot and reinsert it “in case something goes wrong with the epidural.” It turns out that method actually isn’t traumatic at all–not nearly as much as holding down your infant’s limbs so they can hold a reeking mask over her face. Too late. Next time. But she improves visibly by the hour, standing up naked during a diaper change to salute the nurses. They applaud.

Tom brings cake every day for us and the nurses. We’re a hit. “I did it so they’ll remember that adorable American baby with the dad who brings cake and take good care of her.” They remember, and they do. They are incredible. I miss Tom, though. Five hours of company out of 24 isn’t enough, but he has to bring Maggie to and from school and take care of her at night. She just isn’t comfortable enough with strangers for an extended babysitter–her overnight stay on Sunday went badly, with a pee strike and sobbing until midnight–and it doesn’t occur to us until the end of the hospital stay that we should have just sucked it up and flown my mother over for the week. Next time. I hope there’s no next time. Let this be it for my poor little girl, who is recovering beautifully but exhausted and stir-crazy.

By Thursday I’m a raving mess, and so is Moira. The constant monitoring for the epidural has landed us directly opposite the nurses’ station, which is the noisiest spot in the hall. Moira is terrified that she might miss some of the party, which leads to us pacing the quieter sections of the ward for four hours. She dozes off around 2am, gets up again at 5:30 for an hour, and I call Tom at 7am and tell him that I didn’t care who he had to wake up, or how many people he had to call, but I didn’t think siblings were allowed to stay long and he needed to get down here before Moira and I both collapsed and I didn’t know how long it would take to discharge us and just find a sitter for Maggie and and and…I ramble on into my Diet Coke. No hot drinks allowed in the ward, and I need a coffee. Moira needs me to have a coffee. That jerkoff kid making earsplitting karate noises because his painkillers are working a little TOO well needs me to have a coffee before I commit an act of violence.

Moira is pronounced perfect and gorgeous and healthy at 9:45. We get verbal discharge instructions, a promise to send us a letter with a date for a follow-up appointment, a fare-the-well from the staff, and are out by 10am.

And that’s it. We’re done. And lucky. And grateful.