The elevators at CHOP talk to you. A child’s voice announces which floor you’re on and which direction you’re going next. “Floor 4, goooing up!” it says cheerfully. Sometimes with a British accent.

We’ve spent most of our time here in the South Tower, primarily on the 9th floor, neurology. Floor 9 is the highest so everyone gets off either before or with me. I sometimes play a game in which I don’t watch as parents push a button when they get on the elevator and I try to guess on which floor they’ll get off. Each floor has one or more departments which it primarily houses. We’ve been on three of them inpatient, but never below 7, although our stay on 8 was just one night because that was where there was space available. The parents getting off on 3 always look the most weary and haggard. I can usually guess them with the greatest accuracy.

1st: Emergency Department
2nd: Nothing
3rd: Oncology
4th: Surgery
5th: Gastroenterology GI, Hepatology, & Nutrition
6th: Cardiac Intensive Care Unit (CICU)
7th: Pediatric Intensive Care Unit (PICU)
8th: Pulmonary Intensive Care Unit
9th: Epilepsy Monitoring Unit (EMU), General Pediatrics, Neurology

On Thursday of last week, Shawn had another MRI. Based on the results of it and other recent tests and the fact that we can’t seem to control his symptoms with procedures or medication, the doctors and I discussed some surgical options. None of which sounded terribly good to me. After a subdued and somber discussion, we decided to talk about it again in the morning.

It was 7:25PM, the cafeteria closes at 7:30PM and I hadn’t had dinner. I jumped in the elevator (“Floor 9, Going Down”), grabbed a pre-wrapped burger, and headed back up. I was foggy and emotional from the discussion with the doctors. The elevator was crowded with mostly parents. I looked at the panel and every button was pushed except 7. The PICU. I’ve written previously about my fear and hatred of the PICU. I looked around and said “oh, come on, no one’s going to the PICU?” and everyone laughed. “Oh god, we were just there last week, it’s the WORST!” said one mother. “I am SO glad we aren’t there anymore and are back on 5.” said another dad. And for the short elevator ride, we all seemed to find some sort of humor in it between ourselves.

On Friday morning, the doctors and I agreed on which surgical procedure to do. A diagnostic one that will hopefully give us some more clues as to what’s going on with Shawn. At best we might even get a diagnosis.

The procedure requires the following days to be on the PICU. Even I agree with this. He has a tube coming out of the side of his skull, after all. He’s had this procedure before, so I knew what to expect. That doesn’t make it easy.

I met with a hospital social worker a couple weeks ago. I’ve never paid much attention to the social workers here because I didn’t think they applied to me but she has put me in touch with a lot of financial and other resources that will hopefully be helpful to us. She also told me that she thinks that Shawn and I have both experienced actual trauma here. As I followed Shawn’s bed onto the PICU floor and started physically shaking, I began to think that she might be right. I remembered the importance of the fixed cervical vertebrae on the PICU. Don’t turn your head. Don’t accidentally glance in any rooms because you can’t unsee something you wish you hadn’t seen. I also remembered the words of a doctor back in November – “you can’t trust joy in the PICU.”

Day 2 on Floor 7 and things were calmer. The roommate we had when we arrived on Friday night had been transferred to a different floor and we didn’t get a replacement so we had the room to ourselves for a night. Our daytime nurse looked at the race t-shirt I was wearing and encouraged me to go for a run outside. Since we discovered that we all run competitively (at times) I chatted with her and our night time nurse at shift change about running and racing and the challenges  and benefits of training through our various life stressors. They told me about how their views of working on the PICU have changed at times. About focusing on the horror stories and the wonderful experiences.

Day 3 brought another roommate. A newbie on his first admission. A very logical father raving about how wonderful the PICU at CHOP is during his 21 hour stay here. They left the next day for their specialty floor. You can’t help but overhear everything in these small rooms with each side separated by only a curtain so I knew that they had a clear cut diagnosis and a plan to spend three days on floor 5 and then go home to resume their lives. Lives now altered by the kid’s newly diagnosed disease, but with a plan for how to manage it. I was slightly jealous of them.

Day 4 brought some test results for us. Still no diagnosis but some new clues finally showed up. These results mean that we’ll be staying for at least a few more days but we’re moving in some sort of direction. I’m not sure yet whether that direction is forward or not but we’re doing something. And something is better than nothing. Even bad news is better than no news at this point. Moving in some direction is better than moving in no direction.

Today is Day 5 and Shawn is currently working with his hospital teacher. Other than bingo at 2PM, school is Shawn’s favorite part of the day here. I went out to grab a cup of coffee. When I got into the elevator to go back to the room, I had it to myself. This time 7 was the only button pressed on the panel.”Floor 7, going up!”

Shawn went home on Wednesday. He was still a little wobbly on Wednesday following his discharge so we gave him the option of whether or not to go to school on Thursday based on how he felt. He chose to go to school. I remain amazed that for the second time, Shawn had brain surgery and was back to his regular life two days later. Sure, it was relatively “minor” brain surgery as brain surgery goes, but there was a human being physically manipulating Shawn’s brain on Tuesday afternoon. On Wednesday they sent him home. On Thursday morning he was sitting in his classroom. Think about that for a moment.

Let’s back up to that “human being” part. In my post from the hospital earlier this week I wrote about the neurosurgeon saying “this kid is trying to die on me and I need to work on her right away” when telling me about the delay for Shawn’s procedure. I have thought about that sentence a few hundred times since then. This blog is intended to be about my experiences as the parent of a kid with an as-of-yet undiagnosed disorder trying to navigate my way through the hospital experiences. Part of that process for me has been figuring out who is who. Doctors are people. Believe it or not, that’s actually true. In my attempts to help Shawn deal with this whole thing and his sometimes violent reactions to doctors and nurses, I’ve tried everything under the sun to keep his behavior at the hospital under control so that they can examine him or at least so he doesn’t hurt anyone. The one time that I felt like I found some level of success was when I told him simply, “the doctors and nurses are just people who have their own kids and parents and friends and things they like to do for fun when they aren’t here.” For the rest of that particular day, the violence stopped. The name calling continued, but there were no more physical outbursts.

“This kid is trying to die on me.” Like it’s a personal affront.

My outsider assessment of the personalities of the different types of specialists is that the neurosurgeons are at the top of the doctor food chain. They always get what they want. They also make the most money, or close to it. They are the break/fix people (which in my IT field is usually toward the bottom of the food chain, an interesting contrast.) They work insane hours and have a high divorce rate. I imagine there is a certain level of detachment that is required to do a job like that. Something is wrong. Fix it. Move on to the next one.

“This kid is trying to die on me.”

It was detached and emotional at the same time. I could see in her face that she cared deeply about that child. So could Shawn, who was also in the room for this discussion. Looking back, I wonder if that had anything to do with Shawn being uncharacteristically calm and cooperative over the next few hours while we waited for our turn.

The first few months of this process, I viewed the hospital as an entity. The doctors and nurses were just a part of that, not all that much different than the cafeteria or the parking garage. I had to figure out the schedules. When would they be likely to come talk to me? Who would talk to me when? Neurosurgery residents were likely to stealthily come in before 6AM. Even I managed to sleep through most of their visits and I rarely sleep through anything at CHOP. Neurology and general pediatric residents would show up around 7AM to do nothing in particular (from my perspective) but it was nice to see them and chat for a couple minutes. After they came by, I could then go to the cafeteria (which opens at 6:30) and get coffee with no fear of missing rounds, which is usually around 10:00 or 11:00, when I could talk with the attending physicians and find out what the plan was for the day. 7:00PM is usually the latest to talk to an attending. And so on and so on. The doctors and nurses were part of the hospital.

At some point, though, I started seeing the same people over and over again. The housekeeping staff would recognize me and say hi. We would chat about the weather and sometimes about our kids and schools and car trouble and whatever. I would intentionally choose the line in the cafeteria with the really friendly woman who was always so cheerful, even if it meant waiting an extra couple minutes (where was I going anyway?) So it was a natural progression to trying to find out if the doctors were real people, too. The crazy part about that question is that I have friends who are doctors and nurses and other health care professionals. I run with them. I’m friends with them on Facebook. They’re parents of my kids’ friends. I’m fully aware that being a doctor is a career that some humans choose to do. Yes, you have to be pretty smart and CHOP doctors probably have to be smarter than most, but it’s a job. Most adults have a job. That’s one option. But allowing the doctors at CHOP to become real people to me was a deliberate effort. I began to google them. I found blogs that they wrote. I found public Facebook posts. Pictures of kids and families. I felt like maybe I shouldn’t be doing this. Like I didn’t belong there. Like those spaces were their private lives (publicly accessible though they might be) and I am a part of their professional lives. Even when they introduce themselves to me or Shawn by their first name, I refer to them as Dr. Lastname. It’s formal. It keeps a distance. We’re not friends, we’re not even allowed to be friends.

I wrote to a friend about my sleuthing and attempts to force myself to see the doctors as real people. His response:

Especially in your case, I think seeing and knowing the doctors as real people is probably a good thing. To try to explain – in normal cases, you want the doctor to be the genius who knows exactly what to do and takes care of things correctly right away.  In your case (Shawn’s case more specifically), knowing that it is so confounding … seeing that the doctor is a real, caring person might help to reassure that yes, they really are trying their best to solve an impossible puzzle.

Yes. I’m quoting again because I cannot say it any better than that. And I’ve quoted this friend here more than once. He’s pretty good.

Then the inevitable happened. I got a message from a friend who told me that he met a new guy in an organization that he’s in and it turns out that the guy was one of Shawn’s doctors in the fall when he was on the PICU for a while. I recently stumbled on another parent’s blog post that describes what life is like on the PICU from a parent’s perspective quite well. Reading it gave me flashbacks. I hate the PICU. So here is my friend, talking about talking to this PICU doctor, calling him by his first name like he is a real person. Just another guy in the group. I’ve met hundreds of doctors. I only remember the names of maybe 15 of them. This guy is one of those that I remember quite well. He apparently remembers Shawn, too. He did one of Shawn’s lumbar punctures. He’s the one who told me about the NIH Undiagnosed Disease Program and called Shawn “the most popular kid at CHOP” because all the doctors knew about him. He sat with me in the hallway for what seemed like a long time back in October, explaining everything to me and answering all my questions.

There are days when I talk to the doctors here more than I talk to my own family and my other child. And on those days the doctors probably spend more time with us and the other families here than they do with their own kids.

Yesterday morning I set out to run 17 miles but cut it short at 12. I’d been feeling something off in my left achilles tendon for a few miles. Nothing big. The kind of thing that most runners, myself included (especially myself included) would have run 5 more miles and then thrown a bag of frozen peas on it after a long hot shower. And I started to do that. We were a quarter mile from the parking lot and had just turned around to do another 4-5 miles when I decided that I needed to be ultra conservative. I was fairly certain that this is not a brewing injury but I decided that I would rather cut the long run short than risk not being able to run at all. Because I need to be able to run at all right now more than I need to go after a marathon PR. Running is often the glue that holds everything together and I cannot lose my glue. This morning I tried again and finished all 17 miles without incident. While I was drinking coffee with friends after the run, Shawn’s primary neurologist called me, from home I think (not a hospital phone number) where he was probably with his own family but also calling me, and an hour later we were heading back to the hospital.

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.

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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.