Losing Weight and Falling Off the Growth Chart

When I was fifteen I finally fell off the growth charts for weight.  I had been teetering at the fifth percentile for a while, but at fifteen my weight dropped so low for my height that I completely fell off. Due to my gastroparesis anything I ate, I vomited back up.  If I didn’t puke it up it sat in my stomach without getting digested for days, it it got digested at all.  Because none of the typical treatments for gastroparesis were working it was no surprise that I was rapidly losing weight.

Losing Weight Without an NJ Tube

I had tried all the medications they made for gastroparesis, I had tried a million different diets, and I had tried meditation, but nothing worked.  On and off I would have NJ tubes placed, but the NJ tube feeding gave me really bad diarrhea and I couldn’t absorb certain nutrients through my digestive tract anymore.  Besides, at the beginning of the year when I was fifteen and losing weight rapidly, I didn’t have an NJ tube in.

About all I could tolerate in a day was one Pediasure and one Pedialyte.

Dr. Sampson and Dr. Kaye had a little conference about me and then Dr. Kaye called up my mom telling her she wanted me to come in for an appointment.

My Appointment With Dr. Kaye

At fifteen Dr. Kaye liked to meet with me alone first and then call my mom in at the end just to recap the appointment and let my mom know if I was going on any new meds, needed compression stockings or electrolyte packets to put in water, needed a referral, or anything else like that.

Dr. Kaye looked very serious at this appointment.  I knew something was up and could feel my whole body tense up and go on guard.

Losing Weight and Feeding off Organs

“I know you’re working really hard to eat and drink on your own, but I think we need to give you a little extra help until we can figure out the best way to treat your gastroparesis. The rate at which you are losing weight is frightening.  Your electrolytes are all out of whack, your albumin, and prealbumin are so low they don’t just indicate protein malnourishment, they indicate severe protein malnourishment.  You have ketones and are spilling protein in your urine which shows that your body is feeding off your organs for energy,” she began.

The Side Effects of Losing Weight

I just nodded unsure of where she was going with this but starting to get nervous, as she scanned through my labs on her computer showing me how far off my numbers were from normal.

“I know you complained about being tired, cold, dizzy, and having headaches.”

I nodded, the headaches had been excruciating.

“I also know that you showed me that weird fuzzy stuff growing on your back.  That’s called lanugo. It’s also from malnutrition and being underweight. Dr. Sampson and I spoke and we agree that you need another NJ tube.”

“Again?” I cried.

Another NJ Tube

“We would have to put you back in the hospital for a couple of weeks to monitor you for that refeeding syndrome we always worry about.  After that Dr. Sampson and I would like to keep that NJ tube in a little longer to get you on a better regimen and treatment plan. I think we need to start looking into things like a surgically inserted feeding tubes through the abdomen as well. All of this ‘putting-in-of-one-NJ tube-then-taking-it out, then-putting-it-back-in,’ business, isn’t good for you.

As much as I didn’t want to, I agreed to the plan.  I felt so sick. We had to do something and I knew it.  As much as I hated hospitals and feeding tubes, there was no way around it. I was losing weight so fast that clothes that fit me one week were too big the next. Dr. Kaye assured me again that I’d get put to sleep for the insertion of the NJ tube and then we called my mom in.

Trying to Avoid the Inevitable

“Can’t she just go to an eating disorder unit instead of getting another feeding tube at home?” my mom kept asking.  “We really can’t have her at home unless she’s eating on her own. My husband can’t stand looking at the feeding tube.  It makes him feel like a failure as a parent.”

“An eating disorder unit is not going to help her, she doesn’t have an eating disorder.  The problem we’re looking at is that she needs more nutrition than she can take in by mouth because she has gastroparesis and physically can’t eat without getting sick and vomiting,” Dr. Kaye explained to my mom.  “It’s not that she doesn’t want to eat, it’s that she can’t.”

It was like no matter how many times this was explained to my parents they couldn’t comprehend it.

“What if she just took little small sips and grazed throughout the day?” my mom asked.

“That’s the gastroparesis diet.  That’s what she’s been doing and it isn’t working,” Dr. Kaye asked my mom.

“Then she’ll have to get the NJ tube at an inpatient eating disorder facility,” my mom said.

Eating Disorder Facilities Don’t Treat Gastroparesis

“No inpatient eating disorder facility would accept her because she doesn’t have an eating disorder, and they certainly wouldn’t place an NJ tube.  Those need to be placed under monitored anesthesia care with x-ray guidance.  They only place NG tubes.”  Dr. Kaye explained.

“Okay, well maybe she can get an NG tube at an eating disorder facility,” my mom suggested.

I could see that Dr. Kaye was losing her patience.  She sighed and gripped her keyboard just a little tighter.

  “She can’t eat by mouth or feed into her stomach. She needs an NJ to bypass her stomach. No matter what therapy groups and counseling techniques you throw at her anxiety or whatever else you might want to address, the issue at hand is that her stomach is emptying so slowly that it is not allowing her to digest food and drinks.  The traditional meds used to treat that too slow emptying aren’t working, and, as I’ve explained before, she’s not a candidate for a gastric pacemaker because she also has delayed intestinal motility, so we have to find alternate ways to get nutrition into her.

Losing Weight and All the Hospital Stays

It took a little more convincing and acquiescing on the part of Dr. Kaye, but finally, I was on my way to my room at the hospital with plans for NJ placement that evening and home nursing later on after I was stabilized for a couple of weeks at the hospital and sent home with the feeding tube in place again.

The next five years of my life were a flurry of going in and out of my local hospital.  They basically could have set me up a personal room on the adolescent medical floor and the Pediatric ICU of my local hospital.

Because I was such a frequent flier patient, I had the same few nurses assigned to me every time I went in.  It was usually Carol or Cindy for days and Cheryl or Jenny for nights. I always had the same few aides as well. When I was in the PICU (pediatric intensive care unit), however, I got a whole bunch of different nurses.  Most of them were super nice, but there were always a couple who were a little rough and scrappy around the edges.

From when I was thirteen until I was eighteen, I must have had about twenty or thirty different NJ tubes as well.  They had a tendency to either get clogged or get pulled out. Or we would briefly think I didn’t need it anymore and then I would have a gastroparesis flare and they would put a new one in.

The Stress of Being Invalidated

I never went back to school during that period of time, I was homeschooled the whole way through high school.   

However, I did go back to the partial hospital for anxiety and depression several times.  

My parents kept insisting all my medical problems were in my head.  Even though I knew they were wrong, and Dr. Sampson, Dr. Oster, Dr. Kaye, and everyone at my local hospital knew they were wrong, the stress of being invalidated by the two people that mattered more than anyone else in the world wore down on me like an arthritic hip on bone in a ninety-year-old lady. 

Add to that the stress of dealing with my multiple illnesses and you have a recipe for a breakdown.

The worst part was my dad.  When I had the NJ tube in my nose he refused to even look me in the eye.  He wouldn’t even look at my face or head at all.  

My Dad and His Blame

“You need to try harder in therapy,” he kept telling me.  “If you were doing your therapeutic work you would be eating on your own.  You wouldn’t have that goddamn tube in your nose.”

The only thing I had to keep me going through my adolescence full of sickness was my writing.  I wrote furiously about every aspect of my life, as well as writing fiction and poetry, which every good writer knows is also about every aspect of the writer’s life.

My writing was keeping me afloat emotionally even though my dad and I had such a strained relationship that as I got older and sicker was only getting more taxed.

“Just pull yourself up by your bootstraps and sit down and eat dinner with us, stop taking all those pills, and stop going to the hospital all the time,” my dad told me.

Losing Weight and Getting Sicker

“I can’t eat because I have gastroparesis, you were there when I was tested for it.  The pills were prescribed by my doctors and are keeping me alive, I only go to the hospital when my doctors tell me too or when I know it’s an emergency,” I tried to tell my dad through my tears.  But he ignored me.

He thought I must not be doing something right because I was obviously slipping. I was losing weight again.  It wasn’t only apparent to my dad that I was getting worse.  It was apparent to everyone that I was getting worse.  Most of all, me.