We’re back


I did NOT think my son’s visit to the ER would result in an admission to hospital.  I decided to take my son to the ER last week since I was concerned about some GI issues that are both common and troubling for kids with his collection of conditions.   Not only was Matthew admitted to the hospital, he ended up critically ill in the ICU.   And, it wasn’t his gut that was the problem, it was his breathing in the end.  As in he wasn’t doing a particularly  good job of breathing on his own and needed a lot of help for a while.  Fortunately he recovered quickly and he’s (we’re!) home to follow-up with his community based health care team.

This precipitous decline is common for kids who are considered medically fragile.  In fact, it is a defining point for medically fragile children.  Children (and adults) who are considered medically fragile are prone to rapid changes in health that can be life threatening.  One research article I have read compared caring for someone who is medically fragile to living with a time bomb.  You have no idea when the bomb will detonate or how bad the blast will be.  You only know that someday something will happen and it will likely land your child in hospital.  It could even end their life.  It is a very anxiety provoking way to live and parents who care for medically fragile children have had their stress levels compared to combat soldiers.   Symptoms associated with post traumatic stress disorder are not unusual for parents.  The first night after leaving the ICU I kept startling awake convinced that some alarm was sounding and that Matthew was in distress.  Not only were there no alarms, but Matthew was sleeping peacefully in his room with a night nurse standing by his bedside keeping a close eye on him.

My son has been so medically stable for so long that last week took me, and most who care for Matthew, by surprise.  In fact I will admit that my confidence in my ability to “read” Matthew is more than a little shaken after the last week.  Over the years I have come to believe that I am one of the most reliable sources for interpreting Matthew’s presentation and apparent symptoms.  As his mother I am the most deeply connected to him.  And boy, did I misread last week.  Now to be fair, the experts in the both the ER and ICU also had a really hard time sorting out what was going on as well.  And, I take comfort in the fact that I knew to get Matthew to the hospital when I did.  He clearly needed to be there.

Spending time in the ICU borders on living in a sensory deprivation chamber.  It is a weird experience of living in limbo – disconnected from the people, places, and routines that define one’s day and give a life meaning.  You are in an unfamiliar place with its own very specific rules.  It is sterile.  Literally.  Time becomes meaningless and is measured by shift changes, and changes in health status.  I define a day as “the day Matthew was able to come off oxygen”, not a thursday in March.  It can be a very disorienting time even absent the fact that you are on an emotional roller coaster of worry about your child.

I always find returning home after a hospital admission incredibly liberating.  After spending days in a de-facto sensory deprivation chamber where engaging in even the most basic self care, like sleeping and eating, is incredibly challenging coming home seems like a vacation.  I always find this amazing because as an extreme caregiver so often my home can feel prison-like.  There are days that I have become resentful that I could not go out for a walk, meet friends, or attend a social event. But after a hospital admission even the most simple pleasure like a cup of tea takes on new significance.  Heck, the fact that I can do laundry seems exciting.

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