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.

In 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.

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.

This 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.