E during a visit to Nevada and very sick as per the norm."She is LOSING WEIGHT and needs something done! I mean, I bring her in to you every two weeks and she losses weight. There is something wrong here. I watch her suffer every day!" I had my crazy eyes going and the Navy doctor looked completely uninterested. I wanted my baby admitted into a hospital and tests run and she wasn't interested.
"She is six months old, have you tried baby food? She probably just needs baby food for extra calories." I stared at her in shock.
"She chokes on liquid formula and you want me to give her solids?!"
"Just give it a try mom and come back in a couple of weeks to have her weighed."
With that the conversation ended and I packed up my tiny baby and went home. I told D what this awful doctor told me to do and although he had the same look of fear in his eyes at the idea as I did, we agreed to let her attempt to eat baby food. I went to the store and bought some baby food bananas and went home to try this insanity out. Her vaccinations were so far behind at this point because every single time I would take her in to have them done, she would have a new cold, flu, or horrible inexplicable rash indicating an allergy we couldn't pin down. She never felt well and we never had a moment's rest. I feared this baby food experiment but the only way I was going to be taken seriously by this doctor was to do what she prescribed and give her the results.
I sat E in a high chair and propped her as best I could because she was so far behind in her developmental markers that she had just barely gotten down rolling from front to back and visa versa. Sitting up was not even a remote possibility for her weak core muscles. She eagerly took bite after bite of the baby food until we reached the halfway mark on the little container. Out of nowhere her body rejected it and just like the normal formula rejection, the pureed baby food shot from her stomach into her nose and mouth. She stopped breathing and turned purple. I grabbed her from the high chair and immediately began to perform infant Heimlich maneuver until she was able to vomit the rest out and began to breath and cry hysterically. I sat comforting her and crying from the let down of adrenaline I was feeling in saving her. I saw my baby aspirate on solid baby food. Happy now doctor?
Her following poop came out pure white. I knew nothing about poop colors, but my common sense told me it was bad. Really, really bad. I became enraged. I gently placed her in her carseat, put her in my van, and drove straight to the Naval medical clinic. I walked straight up to the corpsman at the desk and demanded the civilian RN. The look on my face spoke volumes because within seconds I had the nurse talking to me and looking E over. I described everything that had been happening and told her I had asked her doctor to release her to a pediatrician and that she had refused. The nurse actually listened and heard me. She looked at and saw my baby and her condition. The doctor was called over to speak to the nurse and they exchanged words. Pretty soon her doctor came running to me and SWORE she would get E in with the UCLA pediatric gastroenterology clinic as fast as possible. I went home.
After the marathon that is obtaining referrals from insurance companies, we received the "OK" for E to go to UCLA and the appointment was made. After a three hour drive to Los Angeles, we went in and saw a specialist that immediately diagnosed her as a failure-to-thrive and told us she needed a lot of tests run that would require admitting her to the hospital. Unfortunately, they were transitioning from an old building into a brand new fancy one and he couldn't admit her until about two or three weeks later. He ran blood work that day to look for anything and we drove three hours home to wait for news on when she would be admitted. The minor validation I was feeling got smacked down pretty quickly when I told people about E's diagnosis of failure-to-thrive because I learned very quickly that the number one cause was parental neglect. I was warned to expect a cps visit and my worst fears started unfolding in my mind. The main comfort I had was that I knew that D and I both were doing EVERYTHING we could for her and that is what they would find if they showed up.
Just before E's hospitalization came through, I got the news that I was pregnant again. I was worried, but too busy to obsess over it and after how I had acted with E's pregnancy, I chose to be happy about this surprise. Not anger or negativity was on my mind. I needed to take care of E right now. I had been taught by my mother-in-law that a family was only as healthy as it's sickest member and right now, we had a very sick baby. When E was seven months old I made the drive to UCLA children's hospital and she was admitted into a bed. One nurse could not stop herself from being rude and nasty to me about how "not sick" she looked to her and how she was taking a bed unnecessarily. Other nurses would just gush about how insanely beautiful and perfect she was. It was hard to go through the shift changes and not know what attitude I was going to be faced with next.
They admitted her on a Friday knowing that the tests would not be run until Monday. They watched me like a hawk in my every action, inaction, and interaction with my baby. They recorded my every move for two and a half days straight because just as I was warned, most failure-to-thrive diagnosis are from parental neglect and abuse and they had to rule it out. I passed their test as a mother and on Monday, the medical tests began. She was given test after test after test for five days straight and they all came back normal. They could give me no answers. At one point, I asked to speak to their geneticist because I had been studying a lot online and her wide range of symptoms appeared genetic in nature. This awkward and rude man came into her room while she lay sleeping in my arms. He did not examine her and he asked very few questions before standing up and telling me "I cannot help you" and walking out. I cried so hard that the nurses had to call in a counselor to talk to me and find resources for us.
E with her NG tube and i.v. going.
E having an EEG run because of her developmental delays.
At the end of the week and after multiple efforts witnessed by Occupational and Speech therapists of my unsuccessful efforts to feed her, a nasal gastric tube was placed. It was inserted through her nose and down into her stomach so that she could be fed by a machine. Medical supplies were ordered to arrive at our home in Ridgecrest in order to continue forcing food into her unwilling body in hopes of increasing her weight. I was taught how to safely manage her tube and feedings and the early intervention center was contacted by her medical team to start as many therapies and services as they could. They had no answers for us, but they provided us with what they could while we figured this mess out. I was devastated and more determined then ever to prove that there was something wrong and took her home dejected. I just told myself that at least we got all those tests out of the way to take us that much closer to a diagnosis. It was all I had to cling to...
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