9 signs that your child’s had too many operations

1) The OR receptionist apologizes for not remembering your child’s name.

2) You have preferences for certain PACU nurses.

3) You know what PACU stands for.

4) You recognize doctors who aren’t the ones operating on your child today.

5) One of the doctors you recognized stops by your room to say hello.

6) They don’t bother giving you the after-care handouts.

7) You’re relieved they didn’t give you the after-care handouts.

8) Your child is unexpectedly admitted, and your main concern is whether Child Life will still be open by the time you get to your room and through the admissions process.

9) On your way out of the PACU, you say “See you soon.”


Police and psychiatric emergencies don’t mix

Trigger warning: this post discusses suicidal thinking.

The shootings I posted about last night have got me thinking about the number of people with psychiatric disorders who come out of encounters with law enforcement either injured or incarcerated or dead, and what I would do, or want others to do, if I was having a psychiatric emergency. My feeling is that the appropriate role for law enforcement in these situations is … none.

That’s right, NONE.

If someone accidentally hit you while they were having a prolonged seizure, you probably wouldn’t report them to the police for assault. You would probably call and ask for an ambulance. People who are having a psychotic or suicidal episode need medical help, they don’t need laws to be enforced on them, even if they are technically breaking some law by their actions. Unfortunately, many people have found that when they or loved ones did call an ambulance for a psychiatric emergency, the EMTs were unsympathetic and rude, which is unpleasant at any time but is catastrophic when you’re suicidal.

Imagine that you are having intrusive negative thoughts about yourself and visions of killing yourself and you’re frightened you may act on them. Now you have to decide whom to call for help: someone who might arrest or shoot you, or someone who might roll their eyes and say derisive things about you being a burden on the system which will continue to haunt you for months to come (if you survive this episode). Who you gonna call?

Yeah, I would call Ghostbusters, too. Unfortunately they are not real and they only deal with ghosts.

The other option, the better option, is also not real – but it could be. There could be specialized Psychiatric Emergency Response teams in every city throughout the country. Contrary to suggestions that have been put forth (and sometimes implemented), this team would not be associated in any way with the police. These professionals would be part of the hospital emergency department. They would work with and alongside, but be distinct from, EMTs. They would be rigorously trained in mental illness, de-escalation techniques, oral and intramuscular administration of benzodiazepines, therapeutic holds and escort techniques and other methods to safely restrain a violently agitated individual if necessary. They would make contact with the individual’s psychiatrist, if applicable. They would provide transport to the hospital if needed.

But it’s important that this PER team would not be associated with the police. They would not have guns. They would not have tasers. They would not even wear uniforms. (They should carry identification, however.) And they would not be in the position that many EMTs are in of comparing a psychiatric emergency to a heart attack, because the psychiatric aspect would be all they do.

Many people have proposed that police officers simply receive better training for psychiatric situations. Many police departments have special protocols for these situations. Often the protocols are not followed. Why?

Could it possibly be that we are asking police to inhabit two completely different mindsets – one essentially military, the other medical – and to switch back and forth between them at the drop of a pin? Could it be that the methods and instincts police are accustomed to use with violent criminals don’t just magically disappear because of the knowledge that the person now coming at them with a pair of scissors is mentally ill?

It’s easy enough to blame an individual officer for “not following protocol”. There are bad police out there, and I’m sure there are excellent police who have helped people in times of psychiatric crisis, but there are also officers who are taking the fall for what is, at its root, a systemic failure. They are being asked to compensate for a shitty mental health system. It’s not really fair to them, and it’s definitely not fair to those of us with psychiatric illnesses.

It may not be possible for police to avoid psychiatric situations, but until we change the whole mindset behind policing in this country to something more medical in nature, we should limit their involvement as much as possible. Unfortunately, it seems like the police method of dealing with mental illness is infiltrating hospitals rather than the other way around. Psychiatric patients are being shot or tasered to death by hospital security guards.

We need to do better than this. Mentally ill lives matter.

Mentally ill lives matter

In the last week, there have been two (publicized) fatal police shootings of women whose crime was to have a psychiatric illness.

One was Deborah Danner, a 66 year old black woman living with schizophrenia. She became violent towards police when they showed up at her apartment; she was psychotic and probably felt that she was acting in self-defense.

The other was Renee Davis, an indigenous woman with two children who was also five months pregnant. Davis apparently texted a family member to the effect that she was feeling suicidal, and the family member called 911. The police showed up and fatally shot her, rendering a suicide attempt irrelevant.

Both women were killed in their own homes.

As a woman with a psychiatric condition who is also a mother, and as the daughter and sister of women with psychiatric conditions, I find these situations – and all the others like them which are occurring all the time – extremely upsetting in a very personal way.

Honestly, I don’t even know what else to say about this. I don’t know if I can say anything. This is not the way to handle mental illness.

I don’t love the term “mentally ill,” but it’s a term that people recognize and understand. I’d like to see a hashtag that #MentallyIllLivesMatter. Because they do.

The mothers who don’t want to talk about it

In the waiting room for one of Monkey’s appointments yesterday, I saw a mother with a baby on oxygen. I recognized the equipment immediately – same DME that supplied ours until a couple of months ago. After a minute or two of hesitation, I smiled at the mother and said, with a nod towards Monkey who was climbing on the furniture, “He was on oxygen for 18 months.”

The exchange that followed was awkward. Suffice it to say that the other mother was pretty cold towards me and made it clear she had no real interest in hearing about Monkey’s situation or in talking about her daughter’s. OK, that’s fair. I will admit, though, that I left feeling not only disappointed but confused.

When Monkey was around 6 months old, a mom came up to me in a doctor’s office and told me that her son had been on oxygen for 2+ years. It was like Christmas. I wanted to know everything – what hospital did they go to? Which pulmonologist did they see? What tests did he get? Did they ever figure out what was wrong? What did they do when he started crawling? Did she hate Apria as much as I did? Did he continue to have ongoing breathing issues?

Having a medically complex child is frightening, isolating, and lonely. It can be difficult to relate to parents who aren’t dealing with similar situations, or for that matter, even to meet other parents because you spend so much time at the hospital or in quarantine. There are also a lot of unknowns and the medical system is difficult to navigate, so when you meet another parent who’s been going through the system longer, who knows the local setup, it’s worth picking their brains. I’ve had other conversations with mothers who seemed as eager as I was to talk about their child’s NICU stay, to compare experiences with a given specialist, to discuss formulas and therapy clinics, sometimes even to exchange phone numbers or email.

But I’ve also had several encounters like the one yesterday, with mothers whose children obviously had some sort of condition or disability, who made it clear that they did not want to talk about it. And I do wonder about these mothers.

I wonder what went through the mind of that mother yesterday. Was she too traumatized to discuss her daughter’s medical situation?

In Monkey’s early days, I dealt with the trauma by telling anyone – everyone – who would listen all the details of Monkey’s difficult birth and medical complications. I didn’t necessarily want to tell them this; it just spilled out of me and I couldn’t stop. But everyone deals with trauma differently, some by talking too much and some by not talking at all. I understand that.

There is another possible explanation for these mothers’ reaction, though. There’s a wonderful film called De eso no se habla, or “I don’t want to talk about it.” It’s about a woman in a village in Argentina whose daughter is a dwarf. This mother not only refuses to mention the fact that her daughter is a dwarf, but makes sure that no one else in the village mentions it either. (She burns a number of children’s books, such as Thumbelina and Snow White and the Seven Dwarfs.) At the end of the movie, the daughter, who is now a married woman and a gifted performer, runs away with the circus. Although her life is basically good, she can’t live in a situation where everyone pretends not to notice that she is a dwarf, denying this aspect of her individuality.

The mindset of the mother in De eso no se habla is foreign to me, but I know that many people feel similarly about their children’s disabilities, even if they don’t go to such dramatic lengths as in the movie. I wonder if the mother in the waiting room thought I was impossibly rude for noticing that her daughter had oxygen equipment.

About a year ago, I went way out of my comfort zone and tried to set up a local support group for parents of medically complicated children. I asked a friend who is much more socially connected than I am to spread the word to some other parents she knew – and she balked. These were parents who had children with cerebral palsy, Down Syndrome, etc. She was afraid that they would be offended by the mere suggestion that they might be interested in a support group. She thought it would be rude to draw attention to the fact that their children had disabilities.

Maybe I’m in the minority, but I don’t think there’s anything shameful about wanting or needing support. I don’t think there’s anything shameful about a baby on oxygen or an autistic child. As long as parents act like these things are shameful and not to be discussed, they are prolonging and intensifying the isolation experienced by other parents and, worse, by their children, who will grow up in a world where their experience is suppressed and unacknowledged.

Again, I don’t know what this particular mother was thinking or feeling. This is just a general plea to other parents.

The unbearable elaborateness of medical tests

My thoughts are not coherent enough to organize a real post right now. We are in the thick of medical testing and procedures. Monkey has two surgeries coming up in the next few weeks (actually three, but two of them will be done at the same time by different doctors) and during the last couple of days he underwent a new test which turned out to be even more involved than I expected (and invasive – the only reason they say it’s noninvasive is because it doesn’t require general anesthesia). This particular test – especially the process of setting it up – was so bizarre and convoluted that I felt like I was on an alien spaceship watching giant-headed people perform experiments, or perhaps witnessing the arcane methods of alchemists who’ve been handling a bit too much mercury.

“Dip the wire into this vial of solution and hold your child’s finger in it, then dip it in another vial and hold his finger in that, and voila! Elixir of youth! … Oops, I meant to say that the machine is now calibrated.”

It was odd and complicated and made me think about how odd and complicated many medical tests are – polysomnography, for instance. Medical complexity introduces one to a new world, a sort of underbelly of respectable society, where people are routinely hooked up to 500 wires at once or sent home with recording devices wired to internal organs. I’m trying to find humor in it because the alternative is crying about how much Monkey has had to go through at his young age, and wondering whether I’m a terrible mother for consenting to it.

These periods of intense medical involvement are hard on him. They are hard on me, too, because I hate seeing him suffer, and also because they require me to be constantly vigilant – monitoring and adjusting equipment, making notes, sometimes restraining him, etc. I become hypervigilant even in my sleep. I can barely bring myself to eat. Every nerve of my body is focused on him, wired to him like that machine. This isn’t some kind of virtue, just boring old exhausting necessity. It’s all I can think about. I don’t think I even dreamed last night.

I try to find the good parts, the fun parts – the gracious Child Life specialist who accompanies us down to radiology, the giant therapy dog in the GPU, the waiting room for the pediatric specialties clinic that is genuinely awesome (because these are the genuinely sick and complicated kids). I take pictures of the cleaner moments and post them on Facebook, try to make it an adventure. I suspect my family and friends think I’m a bit strange.

“Why” they ask in my imagination (and sometimes in reality) “are you posting pictures of your son playing in a hospital waiting room with a tube down his nose, or with post-surgical drains and an IV visible?”

Partly, it’s because it’s hard to deal with this stuff alone. I don’t want to live in this alien world of wires and tubes alone, don’t want him to live alone there. I want people to know this is our life. This is his life. And maybe if I share it with other human beings who care about him, it will all feel a little less alien, a little more human. Just a little bit.

Don’t read this if you’re a positive optimistic person

I hate everyone right now. Everyone, but especially positive optimistic people whose lives are so inspirationally wonderful that they have to gush about it on social media. People who have friends that aren’t speech therapists, whose kids have playdates more than once a month. People who don’t need more than one hand to count how many surgeries and/or hospitalizations their toddler has had. People who don’t carry a medical summary and pulse oximeter in their diaper bag.

Today was a horrible day in a horrible week in a horrible month that isn’t over.

I swear that Monkey’s appointments (doctors, therapy) actually multiply when I’m not looking. I’m not sure whether they breed with each other or reproduce asexually. This week features back-to-back specialist appointments at the out-of-town hospital(s), which means lots of driving for me and also means that Monkey will nap in the car, irreparably messing up his nap schedule and depriving me of anything resembling time to myself for that day.

This wouldn’t even be that bad, except the specialist we saw today wasn’t his actual doctor (too booked up for short notice appointment) but an underling NP who explained to me why we shouldn’t do the surgery requested by another specialist and by his pediatrician, but we might as well go ahead and schedule it anyway, and yeah they might do it, but just so I know it probably really won’t do anything and he doesn’t know if it’s a good idea and we’ll see what the doctor says in a couple days when he talks to her and in the meantime, here’s another specialist appointment for us to go to (pulmonary), oh but he couldn’t get an appointment with the pulmonologist Monkey’s been seeing for over a year so he made an appointment with somebody we’ve never met, whose opinion will nevertheless magically shed light on this whole situation. Or not.

I plan on canceling the appointment with the unknown pulmonologist, but I’m going to speak with Monkey’s regular doctor from the referring office first. The nurse who told me about the appointment was fortunate that I am generally a mild mannered person (some customer representative somewhere is laughing right now, but I did say generally).

Meanwhile, I also found out today that some important paperwork that had been faxed from one doctor to another never made it to the second doctor, so I have to go pick up the paperwork and hand-deliver it to the hospital.

I’m not sure why doctors’ offices even go through the charade of faxing things, because 90% of the time it doesn’t go through and has to be re-faxed or delivered some other way. I guess they keep doing it so that I can have the fun of calling to find out if the fax went through and being transferred to three different people’s voicemails, leaving messages on all of them and thus being remembered by even more people as “that crazy lady who left an irrelevant message on my voicemail.”

I won’t go into the fact that Monkey barely slept at all last night or that he was particularly miserable for most of the day. I won’t mention my conversation with his medical social worker, other than to say that I think I avoided crying while on the phone with her. I won’t go into how it feels to come home from endless medical tests and pre-op appointments and therapies and see pictures on Facebook of friends whose children are having playdates with their other friends’ better, healthier children (I hate them. I hate them all.) who have lots of free time not taken up by SLPs and ENTs and radiologists and anesthesiologists.

Poor Monkey. It’s not fair to him. He’s actually an awesome person (I say this in spite of being his mother, ie. the person who sees him at his worst) and he doesn’t deserve all the challenges that have been dumped on him.

Of course, the children in Aleppo don’t deserve to have their homes destroyed and their relatives killed and be trapped without food or water or medicine. Deserving has nothing to do with it.

The most positive thought I could summon up on the drive home was “If we get into a nuclear war with Russia and die horrible painful deaths, it won’t really matter whether Monkey had this surgery or not.”

See, even during a rough patch, I know how to keep things in perspective.