Life in the PICU - part 5

2 years ago today, Ellie had heart surgery. It's amazing. When I look at my healthy, strong, chattery toddler, I can hardly remember the sick and helpless little baby I handed to the anesthesiology fellow 730 days ago. I wrote this last year, but for some reason saved it as a draft rather than publishing it with the rest of my series of posts about our stay in the PICU.

***

The schedule and set-up of the Children's Hospital PICU are interesting. The ward is shaped like a large U, with the Cath Lab nestled in the middle. You enter one end of the U from the family lounge, past the wall of pictures of former patients. After signing in at the front desk - and this is a pretty involved procedure involving a customized sheet for each patient - you walk around the U until you find your child's room. First come the medical patients, and they take up a little less than half of the ward. I'm not sure what all these kids had, but a lot of it was infectious and I felt resentful having to walk through this area everytime I went into and out of the PICU. Ellie was very vulnerable to infection. Some of these kids were a little older and they had things like viral meningitis or were immuno-suppressed. Others were quite young and had RSV.

The second half of the U, leading around to 7 West (where all the heart kids go before surgery and after recovery in the PICU) houses the surgical patients. Ellie was in the first bed on the surgical side. I don't know what I expected, but on the last glorious day, when we wheeled Ellie through the U and out through the doors onto 7 West, we walked past every single room and I saw every single surgical patient. They were all little babies with bandages down their chests, just like my little girl. Tiny, tiny babies, all in worse shape than Ellie. It was heart-breaking. Quite literally.

Nurses on the PICU work 12 hour shifts. For the first couple of days, Ellie had her own nurse. Once she was more stable, she sometimes shared a nurse with the girl next door, whose room was separated from Ellie's by a completely window-walled nurses' station. These stations were every-other room and one or two nurses would be in there at all times, monitoring their patients when they weren't in the patients' rooms. Every time Ellie's nurse went into the other little girl's room, the medical little girl's room, she put on a hair covering, gown, and gloves. Why? I was nearly panicked before I finally asked what horrible germs my Ellie might be exposed to from this child. It turns out that, of course, it's the other little girl who was at risk, not Ellie. I still don't know what she had, but she'd been in the PICU for months. She was about 7 and spent most of her time watching TV; there was little else for her to do.

Every morning the doctors came through for rounds. I always wanted to be there for this, just in case. But we weren't really allowed to "be there." You're allowed to stay in your child's room during rounds, but you could not step foot into the hallway until they're over. And the doctors do not actually come into the rooms to see the patients during rounds. My hope was that the surgeon, cardiologist, or resident would pop into Ellie's room before or after rounds and share some little tidbit about how she was doing. Most commonly, a nervous resident, clearly concerned with impressing the boss, would stop by beforehand and talk to the nurse about how Ellie was doing. I'd ask questions, and she (the resident) would promise to find out during rounds. I rarely saw the same resident again all day. I did see the cardiology attending and our surgeon nearly every day, though, so I'm not complaining too loudly.

Every morning, I'd wake up very early or, more commonly, stand up from Ellie's bedside very early. I'd go to the family lounge bathroom and take a quick shower, cram a granola bar down my throat, snag a bottle of water, and head back to Ellie's side. The PICU closed at 6:00 am and didn't open until after rounds. This could be 45 minutes or a couple of hours. And if there was an emergency at any time, the floor closed. You could stay with your child, as long as your child wasn't the one having the emergency, and as long as you stayed out of the hallway. There are no bathrooms for visitors' use in the PICU. This could be acutely uncomfortable.

On one hand, I really understand how this situation is best for the doctors and, probably, the patients. It's important for the halls to be cleared for the emergency transportation of large equipment, and for doctors to be able to complete rounds without being continuously interrupted by panicky parents. But on the other hand, it could be a little tough on the parents.