We are back at CHOP. As I begin writing this post, I’m in the surgery waiting room because they opted to do his lumbar puncture in the OR this time. The OR waiting room is actually one of the places that I like to be in the hospital, as these things go. It’s welcoming, there’s coffee, and there’s lots of outlets to charge your devices. Each time we’ve been here, the same woman is working at the desk and she seems to really know what she’s doing. I watch the other Blue Wristband Parents (and I learned today that you get a Blue Wristband in the OR even if you aren’t admitted.) It’s pretty much the range of human emotion expression in this room. So I watch the other parents and wonder what they’re thinking about or feeling at that exact moment.

IMG_4188In this area there are big vertical displays that list each kid’s status by their initials, month and day of birth, and admission unit if applicable. I like to look at the board and check out all the kids’ birthdays, see if there’s any doubles, and if anyone shares a birthday with anyone in my family. The day that Shawn had his shunt placed was 11/11, Bill’s birthday. There was a kid in surgery who’s birthday was also 11/11 and I thought, oh that must stink to have to have surgery on your birthday. Then I looked at the unit and saw that the kid was on the NICU. So I guess it was literally the kid’s birth day. The day he/she was born.

Bill saw a new doctor this week. He was hopeful and excited to maybe find some direction toward figuring out his own undiagnosed condition. Almost three years ago he was diagnosed with Lyme Disease and since then has had a difficult time navigating the medical world. There is a strange stigma to Lyme disease. Doctors won’t touch it beyond that “2-3 weeks of antibiotics” period, after which, you’re cured. You don’t feel cured? You’re still sick? It’s getting worse? You can’t function? Well it must be in your head, but we won’t help you with that either. You’re on your own. We don’t even want to discuss your other health issues like high blood pressure or your chronic hangnails. Get out of our office, we don’t want that here. It’s like a scarlet letter, only it’s Lyme colored and it’s invisible to the rest of the world.

Last Friday night Shawn was in the ER, the third of our four successive admissions in two and a half weeks while everyone tries to figure out why it’s happening again now. On average it’s been about ten hours from the ER waiting room to our bed on whatever floor we are going to be on that time. Shawn needed three attempts to get him to the point where he was comfortable and cooperative enough to lay on his back for the CT scan. And then we waited a few more hours for whatever it was that made us wait that time. This was the same day that I’d gotten up at 2:08AM to drive 20 minutes each way to meet up with the group to run 16.5 miles and then be at my desk at 7AM for work. Some of the ER room chairs have armrests and some don’t. This time we had all armrest chairs which meant that I couldn’t push three of them together and lay down. So I had now been up for over 24 hours (and on long run day no less) and was falling in and out of that foggy half awake half asleep state with me head against the wall. I sent a text to Bill that said, “I fell asleep in the chair in the ER and had a dream that you are here, too, having the same brain tests that Shawn is having.”

The contrast between Shawn’s experiences and Bill’s experiences are baffling. Bill can’t get anyone to pay any attention to him despite illness that is at times debilitating and Shawn has dozens or maybe hundreds of the best medical minds in the world trying to figure it out. And both of them are still sick.


This morning Shawn went back to the pre-op waiting area. The neurosurgeon who placed his VP shunt needs to go back in to see what might be going on because the imaging/diagnostics and the symptoms are not matching up. We were scheduled for 9:00AM, then changed to 7:30AM, then back to 8:30AM. At 8:25 the doctor came in and said to me, “I’m really sorry but we have an emergency patient that I need to work on. She’s trying to die on me so I need to do it right away, is that ok?”

“Is that ok?”

Under what circumstances would that be not ok? And what would she have said if I had said “No?” I understand that it wasn’t a real question, probably more of a communication style. A slang interjection. And in contrast to the usual communication problems that happen every day around here, this time I was given direct and quick information directly from the source as she was heading into emergency brain surgery to try to save a kid’s life. A half hour later a nurse came in to ask if anyone had updated me about the delay. I also strongly suspected that this doctor was the one responsible for letting us sleep on the relatively calm and peaceful neurology floor instead of the noisy, chaotic PICU with hourly checks which is normally required the night before a procedure like this but that we also all agreed wasn’t necessary for Shawn that day. It’s political. It’s policy. It just one of those things that sometimes just have to be that way but I still push back sometimes, to see if maybe it doesn’t have to be that way. About twenty minutes after I asked her “have you ever slept on the PICU?” we had a bed assignment on the neurology floor (I’ll add here that when I asked her later, she told me that the plan had been to admit him to neurology and she just didn’t object from a surgery perspective after our conversation.) We slept great and sleep is important. Shawn slept straight through. I woke up a few times when medevac helicopters landed on the roof above us. This time we were on the north side of the tower and directly under the landing pad. I could lay in my bed next to the window and watch the helicopter come straight down as if it might land on top of me, lights shining straight down from the bottom of the aircraft as it descended. That is another experience that I actually oddly enjoy about being at CHOP. I feel like I’m in a campy 1970s sci-fi movie.

As Shawn laid in his bed in the pre-op room this morning for what would ultimately become about five and a half hours, as opposed to the half hour or so that we had anticipated, he remained uncharacteristically calm and happy and I became increasingly concerned about that other kid. If it was taking this much longer than the surgeon even estimated when telling me about the delay, what were the chances that this was a good thing for that kid? Shawn let me climb into his gurney with him and watch Minecraft videos on his iPod with him, enthusiastically explaining the different characters and laughing at me for not knowing the difference between and mod and a map (and then enthusiastically explaining that, too.) This is the kid who normally alternates kicking and screaming with defiant silence, refuses to talk to any doctor or nurse, and often pushes me away, too. It’s night and day different from “home Shawn.” This morning was as close to “home Shawn” I’ve ever seen him at CHOP outside his room when it’s just him and me.

Finally the anesthesiologist came in to tell us that they were ready to get him started. I asked one of the OR nurses how the other kid was doing. He said, quietly, “ok, it really did take that long but in the end it was ok.” He then added, “thank you.” And I felt instant relief for that kid’s parents. I’m back in the surgery waiting area now, looking around, and wondering if they are still here and which ones they are.

Snowmagedon, Popapalooza, and Stockholm

I haven’t made these blog posts public yet in part because the drivel I’ve written with the knowledge that anyone in the world could possibly read it has stifled anything decent from coming out. When I write Facebook posts, emails, or private messages to friends I do so with the understanding that anything I write on the internet COULD be seen by the world, but in reality, it probably won’t. When I write here, I know that the doctors, nurses, and other hospital staff that are part of the story could read what I’m writing. I also know that the internet is fueled in part by trolls, some good and some bad, and some that won’t think twice about going after a parent of a sick kid and I struggle enough with trying keep my own shit together while informing others of where we’re at.

In September, the pope visited Philadelphia. That Friday, the city was scheduled to shut down by the end of the day. Shawn had symptoms that made his doctors tell us to come in. I wasn’t sure what I’d find when I got here. I asked the ER nurse if they expected to be busy or slow and she said, “we aren’t sure, but it will be one or the other, not in between.” It was slow. The hospital had all kinds of stuff set up for the staff. Barbecues, snacks, food vouchers, coffee round the clock. They were fully staffed and the place was relatively dead. By the end of that weekend, some of Shawn’s nurses were giving me their meal vouchers because they were sick of eating all that food.

IMG_4178This weekend Philadelphia was forecast to get pretty hammered with a big snow storm. Philadelphia LOVES to get hammered with snow storms. The bigger the better.  I think the city was going through some sort of withdrawal given that it’s now late January and we’d had barely a dusting all season and record high temperatures in December and early January. In the ER on Friday night as they told us that we would be admitted, they said that the hospital was over 100% capacity, meaning that we might end up on a different unit than usual and we might have to share a room that’s normally a single. No big deal, this has happened before. I secretly hoped that we’d get a single on a window side on 9 south, his usual unit, because I wanted to watch the snow. We were finally moved upstairs around 5AM and yes, we had a single with a good view. In the morning I chatted with our nurse. So many people had called out. Those that didn’t were give the option to sleep in various spaces in the hospital but she said that most of them don’t. They just drink a lot of coffee. There were no barbecues, no snack table spreads, and the cafeteria didn’t open until the usual 6:30AM leaving few food options available for the very early morning. I saw lots of thanks on Facebook this morning for the snow plowers and other storm people. The hospital staff deserve thanks for being here. It seems to largely be the same people who are routinely here in the tough times.

More Facebook quotes. Since those post were the inspiration for this blog, I’m cool with that and those who are friends with me there can deal with the double posting and commenting.

CHOP’s internal channel has been showing the same kids movies in rotation for the past two weekends. Shawn has decided that he loves The Cat In The Hat (live action from 2003 with Mike Myers). We’re watching it for the third time. I hate to say it but I’m beginning to actually LIKE this movie. It’s hilarious. What’s next, Willy Wonka no longer freaks me out? Claymation is tolerable? Where are we going with this?

A friend commented:

There has to be a term for this sort of pop culture Stockholm syndrome that doesn’t actually use the term Stockholm syndrome.

I’m sure that the pop culture reference was his intention, but I’ve mentioned Stockholm Syndrome here before. And it is necessarily a joke in this situation. There’s no captors here, there’s no victims. Everyone involved wants to help Shawn. And they want to help me and the rest of his family. I do often walk around this place with an “us and them” thought process. And they certainly do have more power than I do over everything that we do here and everything that happens to us. Even so, I still have some control. Shawn has almost no control.

No one wants to be in the hospital. Home is the goal (and I’m still struggling with that Home post.) On Friday I talked with Shawn’s primary neurologist on the phone for about 20 minutes. We agreed on which symptoms would bring Shawn back, or at least warrant a call. When those symptoms showed up a few hours later, I called and we were on the road within the hour. Back to CHOP and the usual 10ish hour process from the ER to our room upstairs. That process is usually littered with traumatic tests and procedures for Shawn and for me an alternation of “turning off the part of me that cares” with quietly tearing up in the corner. Shawn was really struggling, and I knew we’d made the right decision. It made much more sense to me to be here with no option to go home due to the snow than the opposite. Here is where they have a chance of helping him when the pain and discomfort get bad. Here they have a shot at figuring out what’s wrong and then maybe a plan to fix it. Sometimes when we’re home I want to be here and when we’re here I want to be home. Sometimes I beg to go home, tell them I’m leaving anyway because there’s no reason to be here at the moment. I get angry. Then they tell me that we’re going home and I tear up again.

The most recent snow total I’ve heard is that we got 26 inches near our house. That’s half of Shawn. He asked how high that is and I pointed to his belly. We’re going home today.


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 weekdayIMG_4174 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.”