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.

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