Sunday, January 08, 2006

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.

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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.

5 comments:

Anonymous said...

Wow, what clarity you still have about this experience. I am impressed. Elainah spent much time in the hospital, two hospitals actually, our local and the Children's. I am so thankful we were allowed to be in the room on rounds and that it was an open forum for conversation. I cannot imagine how difficult it would have been to not have this line of communication.

Great post about your experience.

Jessica said...

Sarahlynn,

I would never insult you by saying "I know how you must have felt" because I don't. I can only tell you what we observed...and Scott and I have always marveled at the strength you and Paul exhibited during this difficult time. I know you both had to be terrified but you really came across as handling it with such grace.

We are so grateful for the healthy and happy Ellie we know today.

Sarahlynn said...

Rebecca, to clarify, things were different on the the floor - in a regular room in the hospital. The rules were a lot stricter back in the Pediatric Intensive Care Unit. But I preferred the care in the PICU!

Thank you, Jessica. I really have no idea how I was coming across at the time, because I was so totally focused inward (on Ellie, actually). The only external thing I could concentrate on was the shower. I felt like I *had* to shower every day, or something terrible would happen. Or perhaps I just felt more in control when I was clean. At any rate, I basically only cared about how Ellie was doing, and that I was clean and in clean clothes.

The Special Zipper said...
This comment has been removed by a blog administrator.
The Special Zipper said...

Hi Sarahlynn

I'll have another go. (refer removed comment above).

I can say I know how you feel because I have been to the Royal Childrens three times with our 3 year old. Whilst they were thinking of having 4 open hearts he has got away with two to date. Being excluded from rounds in PICU is hard but understandable when our children's lives are in the balance and the treatments are not precise, as I am sure you are aware, try a bit more diruretic .. whoops a bit dehydrated, a bit more fluids ... whoops retaining fluid. Whilst our son has also had two fundoplications (NISSANs) and a range of other tests and concerns, I wrote an article on a more humerous side which I think is vital to everyone but to all parents of sick children. It is titled "Thinking Positive about Parenting a Heart Kid" and is located at http://heartkidsinaussie.blogspot.com/ .