Shawn is going home today. Again.
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.
- 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.