Liminality

I majored in anthropology in college and then went to graduate school for the same. I was primarily interested in biological anthropology, although there was no such differentiated major as an undergrad. At that time (and probably still now, although I don’t know, I haven’t paid attention for over a decade) the “four field approach” was key. Every anthropology student at all levels had to be proficient in cultural, physical (biological), archaeological, and linguistic anthropology. Every grad student had to be able to teach all four at the intro level. As an aspiring academic, I did just that. I even taught at the medical school as a lab assistant in the gross anatomy lab for a couple years, a thought that crosses my mind every now and then while looking at the usually 20-something year old medical students and residents and even the attending physicians and look up their bios and do the math. Were any of these people ever my students? Probably not. CHOP doctors don’t generally come from that school. I know because I read their bios. Medical school is probably its own liminal state.

I’ll skip the discussions of Victor Turner and the origins of the term liminality. I cannot discuss the theory. This is not an academic paper. I couldn’t write one of those anymore if I tried. I’m very far out of the academe. This essay is about my own liminality, and Shawn’s, as we are experiencing it right now.

So lets just stick with good old wikipedia for a definition. Because we’re being intentionally non-academic. And it works.

Liminality (from the Latin word līmen, meaning “a threshold”) is the quality of ambiguity or disorientation that occurs in the middle stage of rituals, when participants no longer hold their pre-ritual status but have not yet begun the transition to the status they will hold when the ritual is complete. During a ritual’s liminal stage, participants “stand at the threshold” between their previous way of structuring their identity, time, or community, and a new way, which the ritual establishes.

My academic friends have used this term more than once when reading my blog posts and when we’re chatting about what’s going on. My elevator post sparked the most discussion about the topic. Because what can be more transitionally ambiguous and disorienting than being literally in between floors in a pediatric hospital? There were times that I got off on the wrong floor or pushed the wrong button simply because I was distracted and couldn’t remember where I belonged on that day or hour.

I’ve also told people that when we’re at CHOP I sometimes think that this is what a foster kid might feel like. No matter how spread out we might be in a room there, if they tell me we are moving rooms or floors, I can pack all of our stuff up into two bags in less than five minutes and carry it to wherever we’re going next. And sometimes I have to do it faster than that.

The current plan involves trying to keep us at home as much as possible so that Shawn (and presumably the rest of us, too) can live a “normal life”. But even home doesn’t feel like home. Bill and Lilly physically moved us into this house in October while Shawn and I watched via text messaging and FaceTime. And in this house, we sometimes have a lot of fun. But often “sick” takes over. This house is good. It’s our home. But it’s not our “normal” lives. And we lost our cat.

This week I was CCed on a letter from Shawn’s primary neurologist to his primary care pediatrician, summarizing an outpatient visit but also telling her that Shawn will now be followed by a doctor in neuro-oncology. This was not new news to me. We’ve had these conversations for many weeks. I know all these doctors. I trust all of these doctors. But it’s inherently disorienting to be transferred to oncology without an actual diagnosis and treatment plan. I’ve said before, too, that I will probably be one of the few parents to feel relief when given such a diagnosis. We just need a plan. Right now we are in no department. No one knows what to do with us. In that elevator post, I wrote about the parents getting off on the oncology floor looking the most tired and haggard. If those are my people then let me be with them. Let’s meet the kids there. Let us structure our time, identity, and community in a way that makes some amount of sense and provides some sort of structure and home. Because we certainly don’t have that now.

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Floor 7, Going Down

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!”

Floor 7a

StopStupidHead

Shawn is going home today. Again.

Stop stupidhead.

Shawn calls people names at CHOP. It’s his thing. It’s part of how he holds onto some level of control in an uncontrollable environment for him. Meaniepants. Stupidhead. Ugly. Poopiehead. I usually ignore it. So do the doctors and nurses. Occasionally we’ll remind him that it’s not nice to call people names and that no one is calling him names. We push back more on the physical violence than on the name calling. He can have that.

So here’s how things went in the last week:

  • On Wednesday he was discharged following the shunt revision and was home and back to school by Thursday and feeling fine. On Thursday night the headaches started again. It got worse and I called on Saturday night. They told us to monitor. I had two goals for Sunday – for me to run 17 miles and for Shawn to get to his friend’s birthday party, rescheduled from Blizzard Weekend when we were also at CHOP. I knew where this was heading and had expected a call back later on Saturday night telling us to come in after the resident called the attending. When my alarm went off at 4:15AM on Sunday with no call, I got out of bed, drove down to the trail and ran the first of three legs of my run. I’d circle back each hour to see if anyone would be joining me since we usually have a small group at 6AM before the larger group at 7AM. I was solo until 7AM. The run was pretty crappy as runs go but in the end it got done and the call came around 9AM to go back to CHOP. I finished my run but Shawn would miss the party. Batting .50 on this one, not bad. I’ve done worse. I started to break down before I left the house. I had to stop myself. No crying in the bathroom on the way in, only on the way out. Those are the rules. My rules.
  • The ER to 9 South transition was average. 10 hours. Kicking. Screaming. Defiant silence. Refusal to cooperate despite the doctor literally bending over backwards on the floor to try to get it done. And with a bad back, I’m told, too. But Shawn won that power struggle. They’d get that part of the exam done the next morning under sedation along with the other tests.
  • I was angry with Shawn. Really angry. I yelled at him. I took away his iPod when he tried to bite a nurse and then me. I stood in the corner reading Facebook and email on my phone while he kicked and screamed his way through another round of IV placement with four people holding him down, each taking a limb.  I told him that he was making this hard all by himself and that another group was coming in to torture him some more. I was certain at this point that I was once again being screened for medical child abuse but I didn’t care. I was as mad as he was but I had an advantage. No one was sticking me with anything or trying to shine an uncomfotably bright light in my eyes. I could just read Facebook and see what people were doing who weren’t in the ER at CHOP for the twelfth time (or is it thirteen now?) in the last five months. Their lives looked mostly fun in that contrived way we make our lives look on Facebook. So I didn’t feel too left out.
  • I thought about what to do about discipline at CHOP. He doesn’t behave this way at home where there is little tolerance for hitting, biting, or name calling. But what do I do here? I don’t know how to control his behavior. I cannot punish/discipline him here in the same way that I do at home. Or can I? Hit the doctors and you lose TV and your iPod for the rest of the day? I can’t see anything good coming out of that here. But maybe that’s what parents do here. I should talk to parents of kids his age here. But how do I find them? I tried to ask a doctor for advice the next morning but she seemed in over her head and pretty much told me that she didn’t know needed to see other kids before rounds but that she’d get back to me. No one ever gets back to me.
  • I sat in the hallway on Monday night trying not to cry while the nurses force him to take his medicine. I was in over my head. I didn’t know what to do.
  • In the past week I’ve been feeling something strange that I can’t identify. It’s like I’m existing in the world but watching things happen rather than being a part of it. It’s not like I can’t function as myself. I can. But there’s an extra layer that requires me to observe the situation at hand and then decide what I would say. Will say. Will do. What I would do if I were myself rather than watching myself. And then I can actually respond appropriately but it takes extra time to get there.
  • When the nurse came out and told me that he took half his meds and threw the other half across the room and she would let the doctors know the struggle and ask for alternatives in the morning and said “he’s had about enough”. I couldn’t hold back my tears anymore and said “I’ve had enough too. I don’t know what to do.” She said, “Go for a walk for a while, he’s ok, we’ll check on him”. I said I don’t have shoes on and she said that doesn’t matter. I said I need shoes but what I really wanted in the room was my headphones so I could walk by myself and listen to music. I went into get them and Shawn was sobbing. Uncomfortable sobbing. Painful betrayed sobbing. Life isn’t fair sobbing. I sat next to him and hugged him and sobbed uncontrollably, too. For about ten minutes we held each other and just cried. He asked if we could go for a walk together so we did that. We went downstairs toward the gift shop which is still open at 10PM. He had once asked me what the prayer and meditation rooms were for. I explained what religion was as best I could and why those rooms were in the hospital. We walked and went into one of those rooms and sobbed together some more. He asked me, “do parents came in to these rooms and cry for hours after their babies die?” I said yes, some do. He said that he was sad when the kid in the room next to him died last fall when we were on the PICU but he didn’t know what to do. “You and daddy were just angry and frustrated all the time and it scared me.” I said he could cry and he did. We cried together some more. I asked him if he was afraid that he might be dying and he said no.

Prayer

  • At some point he just perked up and asked if we could go back to our room. We watched more Minecraft videos together until he fell asleep.
  • That night was awful. Awful isn’t even the right word. The doctors had asked me all day what I wanted and I just kept telling them in various iterations of flat out I Want A Diagnosis And A Treatment Plan. I can’t do this anymore. We’re beating him up. We’re invading his body, his brain, his mind, his guts. We’re doing this over and over again when we don’t have a clue about what’s wrong or how to fix it. No more. Figure it out and make a plan. I’ll be here. I’ll plan to be here. I can’t quit my job but I’ll figure it out if I can make a PLAN.
  • Shawn led me that night. He told me that it didn’t bother him at all that I cried, and cried HARD, with him, hugging him and telling him how I felt. That he liked that. He doesn’t like me yelling or getting upset with him or the doctors. There’s something in there for me to figure out. I sobbed openly with the door open while holding my seven year old son on my bed in his hospital room. At one point I heard someone outside say “he’s in there, underneath her, let’s leave them alone.” That moment might possibly be the most vulnerable I’ve ever allowed myself to be. I already know that I have to get over my own hesitation about showing emotional vulnerability REALLY QUICKLY if I have any hope of helping my child get through this. So I’ll do that. If it kills me, I’ll do that. If I click Publish on this post, then I’ve made some progress. I think he and I had breakthrough (and a breakdown) that night. We talked some about it the next morning. He reiterated his feelings about crying (good) vs yelling (bad). I will do my best.
  • I woke up with an emotional hangover that I expected after what happened the night before. An emotional hangover tends to be similar for me to a physical alcohol hangover in the sense that I was foggy, had a headache, and felt regret.
  • Shawn worked with the hospital teacher on Monday and Tuesday. He really loves that part. Absolutely loves it. It’s one of the things he enjoys about being here. It makes me happy to watch them.
  • I requested a family meeting with the doctors from all currently relevant specialties. Actually, I insisted on it. I would do my best to not yell. I was nervous about this meeting in the way you’d be nervous as a kid while being sent to the principal’s office in grade school or how I felt right before walking into my oral comps in grad school or how a drug addict might feel when walking into an intervention. None of those analogies actually works in terms of the circumstances but it was probably a similar feeling. The meeting was scheduled for 2PM. At 1PM I took a shower, then filled the bathtub with hot water and sat there for 10 minutes. As I drained the water, I could feel my body getting heavier as the water ran out and gravity was again working at its full force.
  • I walked in, they were all sitting around the table already. There was an empty chair in the middle for me. I couldn’t even look at them. I just found my chair and stared blankly ahead. The same silent defiant stare that Shawn sometimes does. I guess I know where he might get it. During the meeting I noticed that the detached “watching myself” feeling was gone. I wished it wasn’t. I wanted it then more than anything.
  • At this point we still don’t have a diagnosis but we do have a new plan, a new approach to hopefully manage his symptoms better at home and stay here more often than not. I feel hopeful.

While we were packing up to leave today, Shawn said

Every time we leave CHOP, I miss it. Every time we come to CHOP, I don’t like it.

I hugged him and said, “me too.”

He pulled back from me, saying “stop stupidhead.” I chose to reprimand him this time, he can’t call me names. He said that he didn’t call me a name. Sigh. This again. “I heard you do it, you called me ‘stupidhead’.” and he said again that he hadn’t said that. “Don’t lie about it, you called me that.” “No, I didn’t!” “Yes, you did, I heard it!” But wait, stop raising my voice. I’m not yelling anymore. I lowered my voice and said again, “you said ‘stop stupidhead’ when I hugged you, and that’s not ok.”

No, I didn’t say that. I said “Stop, Stupid Head.”

And I suddenly understood. He’s talking about his head and how much it hurts sometimes.

Doctors and Other Humans

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.

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Contrast

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.

Home

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.”