Thursday, February 9, 2012

Feeding Tube Awareness Week, Day 5

You may have noticed that I took a 2 day break from blogging about Feeding Tube Awareness. I was having difficulty blogging about the daily topics. One was "A day in the life of tube feeding" where the blogger is asked to go over all that is involved in the process from morning to night and most nights, through the night. I decided that I'm going to sit that one out. The brain is magical, it allows a person to forget so the person can move on. We've moved on. If I really thought about it, I can remember every detail, even the feeding pump alarms. I'm CHOOSING not to.
Yesterday's topic was "how has your attitude/family/friends' attitudes changed towards tube feeding?" We've always been blessed with very accepting family and friends so their, YOUR (the reader) attitude has always been amazing. No change was needed because everyone understood or at the very least, tried to understand. We did get the occasional ignorant comments like, stop tube feeding her and she'll have to eat. But I won't focus on the negative. Thank you to all of you who were and still are supportive, understanding and accepting.

Now on to today's topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.
(The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area, however, there is a need for basic knowledge among a wider range of medical professionals)

I have a few examples of losing faith in the medical professional treating my daughter. I will share two such tales.

May 2009 Maryam was at Children's Hospital of Orange County (CHOC) for a 4 week non medical inpatient feeding clinic. One day while she was playing in our room she accidentally pulled her button out. No big deal, right? Except they told me not to bring an extra button because if we needed one, they would provide it. So I called a floor nurse to come in and put a new button in. She walked in with the box and handed it to me.
I asked the RN, yes RN, if she was going to put it in and she looked at me like I was nuts!!!
I looked at the box knowing full well she wasn't going to do it and handed it back to her. At this point I was curious as to what excuse she was going to give.
That's when she asked me if I've ever done it before and if I knew how. That's when I looked at her like she was nuts. OF COURSE I HAVE!!! Only dozens of times, but why does that matter?
She then proceeded to ask me if I minded putting it in because when she does it, it "freaks" her out. SERIOUSLY?!?!?! That same night, with the same nurse, she tried giving Maryam the wrong meds. But that's a whole other story.

On February 14, 2010 Maryam was taken by ambulance from High Desert Medical Center in Joshua Tree to Kaiser Hospital of Riverside because she had acute pneumonia of the upper left lobe as well as flu b. (Yes! She did have the flu shot) Upon arrival at 2am the intern doctor on duty was asking me about Maryam's medical history. I started from the beginning and went to the present. She asked about her 3 surgeries. When I explained that she had a G-tube placed and a fundoplication in July 2007, she looked at me like I was crazy. That's when I realized she was clueless. She had never heard of a fundo and looked at me like a deer in headlights when I asked for a feeding pump.
When the resident could tell that my head was going to explode she escorted the intern out and came back to finish the admission. This time the doctor asked what kind of pump and formula we needed. She then told me she was going to hold off until Maryam was stable and told me she'd be fed via IV for the night.
A few months later I was discussing this incident with one of Maryam's neonatologists. She is known around the hospital as "The Saint" because she's just ridiculously sweet. She told me that my job on this planet is to educate. Even if the student is someone who should already know, I have the rare knowledge of what life is like caring for a micro preemie with many issues. Since that day, I've been much more understanding.

1 comment:

  1. Jen, I'm so happy that you've been able to "forget" the daily nightmares of tube feeding, vomiting, alarms, and having your entire life revolve around nourishing your child. You give me hope and inspire me in more ways than you can know. I'm still in it right now and can't bring myself to write more on the topic than what's in this comment to you so I admire you for having the courage to revisit the "old" way of feeding Maryam to bring awareness to this topic. Thank you! Lots of love, Palak