It was our first ever family vacation last week! We packed the minivan full of gear (the vent, the AirVo, the food pump, boxes of formula, boxes of suction catheters, boxes of inhalation-grade water, oxygen, emergency supplies) and the usual family vacation items (little boy backpacks full of toys and coloring books, suitcases, water shoes and toothbrushes and sunscreen), and bounced up to Connecticut to see one family, then to NH to see the other.
It was a needed break. July has been a hard month. We had to put our wonderful cat down after 13 years of friendship. This was the boys’ first experience of death, and they are still processing it. Jack especially has been asking where Buca is each morning around the time that we would have been giving him his medicine. We also had to say another kind of goodbye. Since Jack’s discharge, he’s been looked after during the day when not in school by a daycare facility which provides nursing care and therapy services. These are the nurses who have risen early to get on an ambulance to ride to our house and deliver Jack back to the facility in time to catch the bus to DSD. This is the team that spotted Jack’s emerging hydrocephalus symptoms when he needed a shunt revision. This is the team who saw the onset of Jack’s seizure, kept him safe through it, and kept careful notes of its characteristics. And this is the therapy team who worked tirelessly for Jack, pushing him and pushing us to work harder at getting him mobile, accessing language, learning to socialize. This team has become like family.
Yet, in the last 5 months, most of the nursing staff there turned over quite suddenly. We learned of at least one occasion in which a nurse who had formerly worked there full time stopped in to see him and found him asleep without his vent, an oxygen monitor or a nurse- a dangerous situation. There were occasional mistakes- nothing serious, but then Jack’s behavior surrounding basic care began to change. He expressed fear and distress whenever we needed to clean his trach or g-tube site. It’s been an uphill battle to get Jack back to a level of comfort with basic care since then.
We decided to remove Jack from the facility this month. It was a terribly difficult decision. It means that Jack is missing a month of therapy with an extraordinary team. It means an abrupt goodbye to teachers and nurses who have always advocated for him, who truly love Jack as if he were their own. And it means saying goodbye to Urgent Ambulance, an amazing team of people who have been bringing Jack to and from daycare for us each day. These folks took time out of their own day to buy Jack a balloon on his birthday. They play music, flash the lights for him… they do a lot to make him feel special. Part of me will miss the daily rituals surrounding the comings and goings of the ambulance. Knowing I have to hurry home to intercept the ambulance has kept me from working late most nights, and I’ll miss hearing Sam shout “The AAAM-Bu-LAAANCE!!” when that white shape pulls into the driveway.
I’ve listed quantifiable, objective reasons for our course of action here, which may lead you to think that this decision was entirely rational, measured, and clean. What is harder to detail is the way that our feelings play into making such a decision. According to the ubiquitous Meyers-Briggs Type Indicator, I score fairly high on the intuition scale. When I was in high school, this classification seemed to affirm that I had some mysterious, little understood type of access to the world that others did not have- that my gut feelings were more likely to be right than others’. (Maybe I was even a little psychic?) Maybe the world contained mysterious forces, and I was one of the few who could interpret them (always correctly, of course). Thankfully, 20 years of making mistakes has more than tempered this view. Now I see this aspect of my mind quite like that teenaged daughter. Full of promise and able to cut through a lot of nonsense with the occasional flash of insight… but also generally lacking impulse control and not to be trusted with the car keys.
I’ve been thinking a lot about when to “Go with your gut” when making a decision about education or care. How should the ethereal feelings and inscrutable conclusions that form rapidly in the intuitive mind be allowed to influence decisions when you’re caring for someone who is medically complex? When do you stop weighing the logical pros and cons and run with your intuition?
Sometimes, the information received from the intuitive mind is as obvious and incontrovertible as steam rising from a morning cup of tea- a knowing that is as fundamental and taken for granted as the laws of physics- just an overlooked piece of the picture. Yet more often, I find that unpacking my own intuitive judgments is more like watching a wisp of cloud in a clear blue sky. You can be aware of its presence, see the movement of the vapor, make a study of its tendrils curling in on themselves, you may even be able to define its edges. But determining its true size, its relevance, is impossible because your mind cannot perceive the depth of the sky.
How do you recognize the errors in intuitive judgments and refocus when incorrect? I knew that the new staff at the daycare was making mistakes, and these mistakes were filed away in a log book of sorts in my mind, adding up over time to an unsavory picture. Yet, my mind is not similarly keeping track of all the times that things went right, so a true accounting is not really possible. Like the depth of the sky, we lack an understanding of our own minds, and this leads so often to poor “gut” conclusions.
In the end, however, Jack’s behavioral changes are ultimately what forced the decision, despite my uncertainty about whether “trusting my gut” was really the right course. Jack just didn’t seem to get out of it what he once had. This is the hidden strength of intuition. It works poorly when trying to make a decision on something you know only a little about, like (for me) what nursing training standards should look like in a pediatric patient extended care (PPEC) center. Yet, it works very well indeed in spheres in which you are an expert. So, while you’ll never hear me utter the phrase “mother knows best” (because I don’t), I do spend an enormous amount of time with Jack and Sam. I watch their faces as they react to the large and small aspects of their life, I observe their bodies in anger, at rest, at play. At least right now I can say that I know my son pretty well, and I trust my gut when it tells me that he’s not okay.
My own rule of thumb for making a gut decision vs a solely logical one adheres pretty closely to this- do I know a lot about the subject I’m making a gut call on? No? Then I better do research and talk to some experts and mentors. Do I know a great deal? In that case, I should listen closely to my intuition.
In August, a lot will have changed. We’ll miss our furry companion, we’ll miss our old friends at daycare, and our friends on the ambulance. But we’re looking forward to the exciting things that are ahead. Jack will soon be picked up and dropped off by a school bus for his all-day program at Delaware School for the Deaf, which will solve our major transportation problems and meet our desire for Jack to have a rich social learning environment. Medicaid picked up the cost of additional home care nursing hours, and Sam’s daycare, Learning Lane, didn’t hesitate when we asked if they could provide care for Jack during the day for the month of August, if a nurse is with him. The boys’ first day at daycare together was today, and they did well.
PS: If you are interested in reading about the strengths and limitations of the intuitive mind, I highly recommend reading Daniel Kahneman’s Thinking Fast and Slow.