Being a Patient's Advocate

Being a patient's advocate, in this case for our daughter Samantha, is a case study in conflict resolution. Don't believe me? Read on.

On Day 3 of Samantha's stay in the hospital, Alicia ran into some issues at night with the respiratory therapist not wanting to do the number of treatments that Alicia had been led to believe should happen. She had to get a hold of a doctor to finally sort it out. This was disheartening, but since we had already had some issues with this RT, we figured it was just him that was the problem.

By Day 4, when I took over, we thought everything had been ironed out. Wouldn't you know it...the new RT thought he was supposed to do a different number of treatments than I did. I was extremely frustrated by this, but it was really just part of a larger picture.

We were also supposed to know by Day 5 what the doctors were going to do about a bronchioscope and what her future treatment regimen was going to be. We wen't all day without hearing about either. By evening, when the new RT said he was only doing x number of treatments instead of y, I was unnerved. I called for the nurse, and calmly explained that I had been asking for information all day and wasn't getting any. Then I asked her to please make sure a doctor comes to see me.

A resident showed up about a half hour later. I walked outside the hospital room with her and explained in detail that first and foremost, the RT was not doing the agreed-upon number of treatments. Either he was right, or I was, and since I was working off of what the doctors had last told me, I felt I was. Turns out I was right about being right. Secondly, I wanted to know what the xrays taken the previous day meant. She explained to me some more details of that, but told me that a decision had not been made on the bronchoscope.

Suddenly, the next morning, I was inundated with information. Doctors were practically falling over themselves to give me information that I should have been given the day before. I still noticed inconsistencies with their information, which continues to frustrate me as our stay goes day by day. Still, it was good to finally get the information we had asked for the previous day.

I'm sure I was labeled "that" dad. I tried to be respectful every time I asked for information and when receiving that information from the doctors, nurses, and respiratory therapists, I showed gratitude, because that's exactly how I feel. Alicia and I both thrive on information. It's really all we want. I don't pretend to know enough to be a part of the decision-making process, but I obviously want to know what that decision-making process is. We have a life of CF and asthma ahead of us, and I am an engaged father.

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