Setting the Stage

Durham VA Medical Adventures, Part 1

Photo by Bryan White on Unsplash

It has been said that every story starts with Once Upon a Time. Before Once Upon a Time starts, however, it is helpful to understand the context in which a story takes place. After all, context is important to understanding all that happens later in a story.

The forest looks different up close, where you see all the things you can’t see from the highway.

And so it is with my story. The context matters. I went to the VA for the first time on June 24th. But our family’s summer story started 3 weeks prior, on the night of June 3rd.

Our daughter Elizabeth had been home from college for a couple of months. She had left college early, at the tail end of her junior year. She was overwhelmed and overstimulated and couldn’t finish the semester. We were disappointed, sure, but we were mainly worried about her and her mental health. When she came home, it was clear she was struggling with a deep depression. She wasn’t able to get out of bed most days. She didn’t go out with friends. She wasn’t eating and was barely taking care of herself. Challenging her, or questioning her, or even encouraging her, all made it worse.

We weren’t sure what to do. We felt powerless.

This isn’t the first time we have been here with Elizabeth. She has struggled with her mental health all the way back to elementary school. In fact, she was even homeschooled her 5th grade year because her school related anxiety had become so overwhelming. We knew the stakes. Or thought we did.

June 2nd was a pretty typical Tuesday. Justin was still in school. Barb was finishing up leave that she had taken for my birthday / silent retreat. We had a chill day at home. Elizabeth spent most of her day in bed, her door closed. We said goodnight to her after we got Justin to bed and probably watched TV. Barb and I went to bed at around 11. A few hours later, we were awoken to the sound of Elizabeth at the foot of the bed.

She was telling us that she might have taken too many Tylenol. I was barely awake and didn’t really register what she was trying to say.

Me: You took some extra Tylenol? It’s fine, just try and go back to sleep.

Barb: (insistently) No Jeff. That’s not what she’s saying.

Me: huh? Wait. How many Tylenol did you take?

Elizabeth: I stopped counting at 22.

Immediately, Barb and I jumped up. Barb got dressed and drove Elizabeth to the UNC Emergency Department. I stayed at home to get Justin to school and planned to head to the ED as soon as he was on the bus.

Elizabeth spent the next 48hrs or so in the ED as the doctors worked to stabilize her system after her overdose. She had a one-to-one monitor while she was there. A safe, therapeutic acetaminophen blood level is generally between 10 and 20 mcg/mL. Liz’s level was 154. She was in danger of liver failure. Step one was to get those levels down and her liver stable.

Once her liver function was normalized, she was transferred to the inpatient psychiatric ward at UNC. She started out in the general psych ward, but after a few days she went to the Perinatal Psychiatric Inpatient Unit, a specialized, very small (5 beds), unit designed for women who have severe postpartum depression. The team believed that it was a better fit for Liz demographically as it was all young women in the PPIU.

Barb spent almost every minute that Elizabeth was in the ED in the hospital with her. When she went to the ward, she was there every minute she could be, at least at first. By the end, Barb could navigate UNC Hospital (or at least her corner of it) as well as any doctor.

Liz stayed at the PPIU until June 11th, when she was considered stable enough to return home.

When she got home, we all began working to coordinate her follow-on treatment plan. She was set to begin Intensive Outpatient Therapy (IOP), on June 22nd. We had to buy lockboxes and lock up all her medications. We started to better understand some things.

Things like the fact that Elizabeth is most likely on the spectrum, and years of navigating the unfamiliar and challenging “neurotypical” world as a person with autism had left her exhausted, constantly overwhelmed, and fritzed out. Things like the fact that she had struggled with extreme body image issues and disordered eating for years, mostly without us knowing.

There were tears, lots of parental guilt, and an even greater desire to save our kid. And the one nagging thought that never quite went away.

She had taken all the Tylenol she could and then gone to sleep on the night of the 2nd. She said a couple of hours into sleeping, something woke her up, and that’s when she told us what she had done. The thought we couldn’t get out of our head was this:

What if she hadn’t woken up?

She started IOP on the 22nd. Unfortunately, Barb wasn’t there for day one of IOP. Because she was at still another hospital for still another kid.

Our son Willie lives in a group home in High Point, NC, about an hour away. He is profoundly impacted by autism and has lived away from home since he was 11 years old. Willie is nonverbal. He has spoken only a small handful of words in his life, and when he has spoken it is at the level of a one year old - da da da and ma ma ma. He didn’t toilet train until 12. He will never live independently. He is pretty chill most of the time these days, but he remains capable of extreme outbursts and frustrations. However, behaviors that were manageable when he was 4 are decidedly less so now that he is 27, 5-11 and 200 pounds. He is strong and can be dangerous.

Willie had some behaviors at his home, and during that episode threw himself repeatedly on his bed, breaking the frame. The staff tried to keep him from his broken bed, but Willie loves his bed and didn’t understand why he couldn’t be on it. At one point, as he resisted getting off the broken bed, he pulled himself across an exposed screw or nail, which cause a large laceration on his testicle. He was examined by the nursing staff for his group home company and they saw exposed tissue.

So Willie was taken to the ER. Barb (who is also his legal guardian) was called, and on June 20th, she headed to High Point, where she joined Willie at the ER and stayed with him for the next two days.

She had a crazy couple of days. Can you imagine what it would be like to deal with a patient who can’t tell you where it hurts, can’t respond to basic commands, and seems to have no idea what’s going on? On top of dealing with several stacked layers of bureaucracy?

Barb came home exhausted on the night of the 22nd. She checked on Liz’s first day of IOP. We laughed about our crazy summer.

That’s when I told her that the stomach pain I had been having the last week or so was getting a bit worse.

“I think it’ll be fine,” I said. “I just wanted to tell you what was going on. I just don’t want anything to interfere with seeing Matthew.”

See, I was due to fly to Korea on the 28th to spend 4th of July with Matthew. I had spent months planning the trip. I was sure I just had some temporary soreness. I probably tweaked something. And I was used to ignoring physical pain. I had been trained my whole life to ignore it.

A couple of days later, though, I was pretty uncomfortable. So on the morning of the 24th, Barb drove me to the VA.

That part of the story starts tomorrow.

For today, it is important to understand context.