This will be my first actual post on this site, after compiling all the background stuff in About Blue Wristband Parent and Old Posts. I still haven’t decided if I’ll make it public or not.
On Saturday evening I posted on Facebook that we were back at CHOP. People sent the usual (and much appreciated) comments of support. One friend asked me this:
I’m starting to wonder … do you actually feel more out of place when you are at home and NOT at CHOP?
If I’ve added everything up correctly, Shawn has spent 51 out of the last 133 days inpatient, plus about a dozen outpatient appointments at the hospital. 45 of those days were between mid September and mid November, so over half of his time then. I’ve been with him for most of those days and his father covered the rest.
The first time I caught myself calling the hospital “home” was a little over a week into our sixth admission. I was writing about a run I’d done from the hospital and used the phrase “headed for home” to talk about returning. I was surprised and a bit unhappy that I’d done that because I wasn’t going home, I was going back to the hospital. But I was going back to the place that I was living at the time.
The first time we spent 4 nights here, I was a complete mess. I was so stressed out by the experience that I barely ate (highly unusual for me and very un-homelike.) I lost 5 pounds. I didn’t even leave his room for the first two days. It was one of those unusually hot September days when we got there and I’d thought I was just taking him to his pediatrician because he was still vomiting on and off. I told Bill we’d be home by dinner time. I was wearing shorts, a t-shirt, and flip flops. Shawn’s room was unbearably cold and I decided that I needed to get a sweatshirt or something. I left his room, tried to figure out how to get to the elevator, or even how to get off that floor. I asked a nurse how to get to the gift shop at the same time that another parent was leaving his room. He said “I’m going to the cafeteria, it’s right next to the gift shop, follow me.” He told me that he had come in 9 days prior, thinking he was just getting test results and now his infant daughter was going in for surgery and probably wouldn’t walk or talk. The hospital seemed huge. As we walked and talked, I tried to memorize our way so I could get back.
We have met hundreds of medical staff. I used to think that there were always different nurses in sedation, always different anesthesiologists, always a different attending physician. The first time that a nurse saw us come in and came over to say hello even though she wasn’t our nurse I felt happy to see familiar faces and be recognized and also a bit freaked out that people were starting to recognize us, which meant we were becoming regulars.
For the first two months, before the permanent VP shunt was placed, Shawn would get regular lumbar punctures to relieve the intracranial pressure which then relieved the headaches, vomiting, and double vision for a week or so. We spent that in between time enjoying being at home while waiting to go back to the hospital. Both spaces were unnerving. When we were at our house, we were just waiting for the symptoms to return. I started to keep a bag packed and ready to go to the hospital, like third trimester pregnant women do. Early on, it was tough to make the call. Which symptoms warrant a call? How many times? How severe? What time is it? That matters because it’s actually easier to talk to a doctor fairly quickly after hours.
When I was at home, there are times I wanted to be back at the hospital. He’s monitored so closely there (here, I’m writing this at CHOP) that it takes my guess work out the process. When I’m at the hospital, there are times when I’m over the top frustrated. Frustrated with the lack of consistency at times, from everything from nursing procedures to parking rules. From one doctor telling me one thing and another doctor telling me something completely different. Then there’s the lack of privacy. I used to think that the PICU was the worst for privacy. But then this weekend Shawn was connected to an EEG for about 34 hours. In addition to monitoring his brain activity, there’s a camera on him the entire time and all sound in the room is recorded. Granted, they only use this to review if something odd happens (it didn’t for Shawn) but the idea of being recorded via video and audio at all times is unnerving and creepy.
And, of course, who wants to live at the hospital. Just because someone else cleans your bathroom every day and you can order room service doesn’t make it a hotel. And if it’s as confusing, frustrating, boring, and scary as it is for me, I can’t imagine what it’s like for a seven year old kid.
I’ve noticed a pattern that may or may not have any truth behind it. When Shawn thinks that he needs or wants to go back to the hospital for reasons having to do with his illness, he tells me that he wants a Starbucks sandwich. Here’s the story behind that one – last fall one of my running groups gave me and Shawn and our family a collection of cards, cookies, and gift cards. One of the card was for Starbucks. I noticed that there was a Starbucks right outside the hospital’s main entrance and I headed over one morning to get a breakfast sandwich and coffee. Shawn normally hates egg sandwiches and melted cheese on anything other than pizza or mac and cheese. He tried a bite of my bacon, egg, and Gouda cheese on ciabatta bread and oddly loved it. I got him one of his own the next morning with the remainder of the gift card. He often asks for them when we’re at CHOP and sometimes I get them for him. Only twice has he ever asked to get one from home and both times were when the symptoms were building and we were about to head back down. So I think I found his code for “I want/need to go back.”
We recently made a verbal list of things that we like about the hospital. Medical bingo every weekday at 2PM. Visiting the stuffed animals in the gift shop even if we don’t buy one. Some of the food is really good (more of it is good than isn’t good and some of it is great.) You can snuggle in bed and watch The Price Is Right on a Tuesday instead of being at school or work (ignoring the downside of not being at school and work for a moment).
Sometimes I think I like being at CHOP in that Stockholm Syndrome sort of way.
Shawn and I played Trouble today, the game where you pop the bubble to roll the dice and have to navigate four pegs around the board, trying not to get sent back to the start when another peg lands on you. The first player with all four pegs in Home is the winner. Shawn won most of our games today (so far). He said, “it’s good to be home, you can’t die at home, outside home you never know.”