In our first weeks in PICU in Westchester, I learned a valuable lesson: ordinary medical triage only takes you so far. A surprising number of ICU parents, especially the short timers, tend to be hysterical and irrational assholes. It’s understandable — you’re terrified as you watch extreme and painful and terrible things happen to your child, your little baby — but it does not serve your kid well. Doctors are people, and people as a rule generally like to avoid hysterical and irrational assholes where possible.
For the first few days back in December, I was an asshole. I pushed back on everything, and I was pretty darn hysterical and irrational. I didn’t want James to be there, and all I wanted was to get the hell out with as little collateral damage as possible. But it started to dawn on me — when I acted like a friendly and normal person, doctors stuck around our room a lot more. They spent more time talking to me about James’ treatment and options, instead of barking orders at the nurses and moving on to the next patient.
So I started purposely befriending everyone I met. I asked about kids, hobbies, medical school, local bars, you name the inane topic, I chatted about it with a doctor or a nurse or an administrator. I thanked the doctors and nurses for all of their help at the end of each shift. We joked (ICU doctors and nurses tend to have a dark sense of humor akin to my own, which helps). The docs stopped by in the morning with their coffee just to see how we were doing, even when they weren’t in service that day. The nurses did the same.
When we had to transfer out of Westchester, I was afraid. I had worked hard to develop relationships with all of the ICU people. As much as it helped James (I could ask a resident for pretty much anything for James, and they would put the order in without blinking – one of the attending docs would joke that they would soon be giving me privileges there), it also helped me keep my sanity. Columbia is the largest and most prestigious PICU in New York, and I wasn’t sure if the same approach would fly.
So I doggedly worked at it again at Columbia. And realized that no matter how big and important, an institution is just human beings. I again got to know all the nurses, fellows and attending physicians. They got to know us. We hugged. We texted. They did things for James just because. The nurses included me in their Starbucks runs. They took me seriously when I said vaguely that something didn’t seem right with J, which in one case lead to the discovery of kidney stones. When I cried (which has become pretty rare as the months have ticked by), everyone came running because they knew James’ mom wouldn’t make a fuss unless there was something serious going on.
We were back at Columbia for James’ eye surgery yesterday. Any procedure requiring general anesthetic also needs a ventilator — yesterday marked the 7th (!) time James has been intubated since December. J is an 11 lb 6 month old with chronic lung disease who has spent virtually his entire life on respiratory support, so there is no such thing as an uncomplicated surgery for him. While the surgeon completed the procedure successfully, it took several hours for J to get his breathing under control. Meaning that although we tried to avoid it, he needed to be observed overnight in the PICU.
As we waited in the surgical step-down unit, I felt equal parts dread and anticipation for our first trip back to PICU. I looked forward to seeing the only adults I really talked to for months. But I also knew there would be lots of “what happened!? is he okay?”, which leads to an explanation of all the new issues that have cropped up in the past month, and then the sad sympathetic looks and hugs…nothing makes the hard shell I’ve constructed around myself shatter faster than the heartfelt arm rub and “Hang in there Mom” that seem to follow every conversation I have these days.
Any dread evaporated the minute we arrived on the familiar 9th floor. Yeah, I know every damn nurse in the unit, but that means every damn nurse comes over to check on J, see if they can help, give us hugs and words of support. It means that the resident recognizes a grizzled and weary PICU mom, and doesn’t try to tell me anything about J’s care; she just stands there and transcribes my instructions. It means they respect our judgment about James and listen to our wishes. It means we are surrounded by top medical professionals who have become part of Team James, doing everything they can right alongside us to give J the best possible shot at a healthy and happy life.
Yup, the last six months has been a battle. And while operation Charm Offensive has taken an awful lot of energy, it came with some pretty huge rewards.