Monday, May 8, 2017

Just One Minute

For years, I have done as much of my son Adam's care as humanly possible.  He and I are a great team.  I kind of instinctively know what he needs, and he needs that mom touch that no one else has.  It is all well and good to be so in touch with each other., but at times, I just really need to not be in charge and to get a break.  We have nurses that help during the day.  We are very fortunate to have two great nurses that I feel comfortable with, I can confidently drop Adam off at school with either one of these nurses and know that all of his needs will be take care of.  I also feel very comfortable running errands or taking a nap with Adam in their care.  However, I still do the majority of his care.

I didn't really understand why I felt like I needed to be the one to do all of his care.  Adam is really slow to develop the trust needed to allow others to care for him.  It honestly takes him about a year to become comfortable with a nurse.

One day, I was chatting with one of our nurses.  I was telling her a story about a time that Adam had been injured in the hospital.  He had just had a major surgery where surgeons placed rods from his neck to his hips to correct the severe scoliosis that resulted from his Spinal Muscular Atrophy.  He was not even 9 years old at the time.  The surgery was done in Chicago, an hour from our home.  I stayed with him throughout his 13 day hospital stay.  I only left his side to eat and go to the bathroom.  The one time the nurses had chased me off of the floor to get some sleep, he ended up getting too weak overnight and had to go back on the ventilator.  One of the hospital respiratory therapist had spent the night in his room so that they wouldn't have to wake me up.  I felt immense mom guilt for leaving him and going to get a few hours of sleep.  I blamed myself for his set back.  Surely, me sleeping had caused him to get worse.

That same hospital stay, We were finally on the road to recovery.  Adam was finally being moved from the Pediatric Intensive Care Unit (PICU) to a regular room.  Adam would need to be monitored for a couple more days to make sure he was truly ready to be released from the hospital.  The nurses told us to gather our personal belongings while they transferred Adam down to the main floor.  David and I grabbed all of our stuff and headed down to the Peds Unit.  We took no more than maybe 5 minutes to gather our stuff and get back to Adam.  After Adam had gotten down to his new room, he told the nurse that he had to go to the bathroom.  An aide was sent in with a bedpan.  She carelessly shoved the bedpan under him, ripping open the newly healed stitches from a major surgery.
I came back from being gone for just a couple minutes.  In just that one minute, my whole faith in the ability of medical staff to safely care for my child in my absence had been destroyed.

It took me 15 years to finally understand why I felt like I had to be the one to do his care and why I absolutely can not leave my son in a hospital for a single night.  Now, I know why it takes him forever to feel comfortable with a nurse.  It really does only take one minute to make an impact on a person for the rest of their lives.

This post is dedicated to Cherry, John, Joyce, Debbie, Marla and George.  The nurses who have come into our lives and made me feel comfortable enough that I could trust them to care for my son.

3 comments:

  1. That really touches my heart. You know I love you guys and you will always have a piece of my heart. I've often thought that as a nurse, you end up trading pieces of your heart with those special patients and you develop what I call a patchwork heart. It changes the patterns forever, making a strong quilt of love.

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  2. You are so right. My husband feels he cannot leave me for a moment while i am in the hospital. I was recently in the hospital. I have a severe latex allergy. There was a sign on the door stating such with a note "no red rubber catheters." Multi RTs came in and said they were going to use a red rubber catheter. Danger, danger.

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