A shattered trust

I'm grateful to one of our readers for sharing the following story.

A shattered trust

When my daughter was discharged from the NICU her neonatologist encouraged us to keep in touch. “We love to get photos” she said. We did keep in touch, but lately I don’t want to send photos.

I worry that in sharing photos with our medical professionals they’ll assume we’re okay and feel they don't have to worry about us. This makes me sad, because it would take such a load off my shoulders if I felt some doctor or nurse – anyone – would worry about something for me, instead of minimizing or ignoring my concerns.

My daughter is chronically sick, which means we need to get in to be seen quickly, but we have ongoing problems with clinic staff and doctors who don't return calls and pages. Nurses frequently dismiss my concerns about my daughter’s health. One doctor failed to respond to two pages, an e-mail from another doctor and a message I left on his voicemail. Instead of saying “I'm sorry I didn't call you back,” the doctor suggested there was a misunderstanding.

When people make mistakes and I ask for change, explanations or at least acknowledgment of what happened, I get yelled at. Both doctors most central to my daughter's care have yelled at me and though she has more specialists and sub-specialists than I care to count, there is not one I feel I can truly trust.

For almost a year I’ve made over 30 calls and worked with six hospital departments to find a way to better handle my daughter’s g-tube changes. My daughter is petrified of the procedure. Her hips are strapped down but I have to hold her arms while she screams, twists her upper body and turns bright red. The first time it happened I had flashbacks to when I had to restrain her for procedures in the NICU. So I've spent months trying to come up with an alternative. I’ve asked for sedation, but been given conflicting information about whether it's safe. I've asked for a child-life specialist to provide support. I've sat outside the procedure room, listening to my daughter (with my husband) scream inside. I've asked if the ‘comfort kit’ is in the room with them, only to be told it’s sitting behind me in the waiting room. I’ve asked if I can take the kit to the room and been told "No." We’ve left in a g-tube that should be changed every six months for 15 months because we can't find a solution to managing our daughter’s pain and anxiety.

I'm also reluctant to share photos with doctors who I feel made decisions for us and not with us. When my daughter was on a ventilator in hospital we asked to have a discussion about how aggressive her care would be. The doctor said “We'll come back and talk to you,” but no one came back.

This is not the life I imagined for my family. Truly, it is not something I could have imagined.

Our daughter is three, but is on her fourth case manager. My typical child has one doctor, who has never yelled at me, never brushed aside my concerns, and never failed to return my calls.

I'm a high-school teacher. As we prepared for the new school year, my colleagues and I discussed how to best meet the needs of our students and their families. We talked about being our best in our most challenging situations. Our administrators encouraged us to come to them with our problems so that we could work together to solve them.

This quote from Colin Powell was shared: “The day soldiers stop bringing you their problems is the day you have stopped leading them. They have either lost confidence that you can help or concluded you do not care.”

These words speak to where I sit now with our medical professionals. I hesitate to ask for help because I’ve become more disillusioned with each failure. Our professionals don't work together to solve problems and give conflicting information. And because actions speak louder than words, increasingly I’m convinced that the bigger problem is that they don't care.