My Story

*This passage is long but it is useful to read if you are going to read my blog it is good information to know because it is the backstory to my blog.

I was born at 29 and 5/7 weeks gestation, despite being born prematurely I didn't have any major long term effects of being a preemie. I was kept in the NICU for thirty days because I was having bradycardias as well as I had sleep apnea and my suck, breathe and swallow reflux had not developed yet so I was initially tube feed until I could safely drink from a bottle. The only one of these issues that followed me into my childhood is the sleep apnea which resulted in me having my tonsils removed after a failed sleep study when I was 5.
For the next ten years I was a healthy, happy kid who played soccer and was in the band. I ate anything I wanted to, my favorite food was Chinese food, and I went to school every day and loved it only missing class once a year when I would always get a chest cold when fall changed to winter. Then in the end of March of my freshman year I was diagnosed with a kidney infection and UTI, which was immediately treated with oral antibiotics which didn't work and I was put on a second round of oral antibiotics several days later. While on this antibiotic I started to have pain in my right flank as well as I was terribly sick to my stomach. With this information and the fact that the oral antibiotics still where not working my pediatrician had me admitted to our local hospital for IV antibiotics. After three days of IV antibiotics I was released from my local hospital and given a number to a Urologist at our major children's hospital, Riley Hospital for Children, and told that the infection was gone but if things got worse before our Monday appointment to call that doctors emergency number and see what he wanted us to do.
We left the hospital on Friday and on Saturday night I was doubled over in pain, severely sick to my stomach and I had noticed some blood in my urine. With this facts my mom called the emergency Urology number and we where told to go to the Riley ER and that we would be direct admitted to the hospital so he could see me first thing in the morning. I was in the hospital for 9 days at Riley where in that time they ran some tests and found out that I have two kidney stones in my right kidney, which should cause no pain until I pass them, as well as they said I had a small cyst on my right ovary, which the doctors said was probably causing the pain but they refused to call in a OB/GYN to look at the cyst as well as they let me stay doubled over in pain and didn't seem concerned that I wasn't eating, so my mom had me released from the hospital and took me the next morning to see and OB/GYN, whom said that the cyst wasn't causing the pain but felt really bad about the amount of pain that I was experiencing and prescribed me something to help with it.  All in all at that point we had relief from the pain but not the nausea or a clue at why I was feeling the way I was.
During the next two weeks things just kept going down hill.  I was barely eating because everything I would eat caused me intense stomach pain as well as made my nausea ten times worse. MY pediatrician ordered an upper GI study and told us to go to the Riley ER every time she thought I was dehydrated. We went to the ER basically every other day for two weeks and all they did was bolus a bag of IV fluids and send me home, saying I didn't appear to be in pain or feel sick. Finally we got admitted to the hospital during one of our visits to the ER.
Once I was admitted I was put under the care of the pediatric hospitalists because they didn't know what was making me sick. While in the hospital I went through a battery to testing, everything from blood work to upper and lower GI scopes. None of these tests showed anything as abnormal. When the doctors where prepping me for the scopes they had to put in a NG (nasogastric) feeding tube, this went from my nose down into my stomach, and since I wasn't eating they decided to try and feed me via the tube. This was a disaster, they could only feed around two ounces through the tube before I was in intense pain, because of that they stopped feeds from the tube and pulled it out. The next day I went down and had a HIDA scan ran which tests the function of the gallbladder. This scan showed that my gallbladder was only functioning at 11%, meaning I would need surgery the next day.
Recovering from the surgery was a rough road, because of the fact that I hadn't been able to eat very much over the past month. One the third day after surgery I was feeling a bit better and had even gotten out of bed a showered and ate a little bit by mouth when the hospitalists called in a new doctor. This doctor spent ten minutes in the room before calling my mom out into the hall. When my mom came back in she told me that this doctor wanted to have a new feeding tube placed because I still wasn't eating enough by mouth and the doctor thought it best to have it placed. My mom didn't agree with the tube placement but those where doctors orders so we had to follow them, meaning an NJ (nasaojejunal) tube, or tube that went through my nose and into my intestines, was placed later that day. They started feeding me 1800 calories via the NJ tube over night and set goals of food for me to eat by mouth each day and it was agreed upon that once I ate those calories by mouth they would be subtracted from my feeds that night. I did well eating 200, 400, and 600 calories by mouth but when we got to the goal of 900 I just couldn't meet that goal.
After several days of me trying to meet the 900 calorie goal while still getting the 1800 via the tube every night (they never did decrease them based off of what I did eat), my team of doctors didn't round in the morning which was unusual for them not to do. Instead around eleven the doctor who ordered the NJ tube to be placed came into my room and once again called my mom out into the hallway this time. When my mom came back into the room she was crying, she told me that this new doctor, who had talked to me for 10 minutes, was wanting me transferred to a psychiatric ward at the hospital she is a doctor at because she had concluded I was anorexic.
My mom, having known me my entire life, knew that I wasn't anorexic and told the doctor that instead of being transferred to the psych ward that she wanted me taken to the other children's hospital so that we could get a second opinion, but the doctor didn't want me going for a second opinion she wanted me to go the psych ward so she called Child Protective Services on my mom and within the day my mom had no rights as to decide where I went for medical care, the doctors and CPS would get to make that call because the papers where signed and I was officially a ward of the state.
When the ambulance got there to transport me to the hospital I was going to go into the psych ward the CPS lady would not let my mom ride over with me, so they sent me with a nurse from Riley hospital in the ambulance with me. My mom and grandma met me over at the psych ward and we filled out the paperwork and then I was forced to tell my mom good bye and was forced to sleep out in the lobby in front of the nurses desk for "safety reasons" due to me having an NJ tube, which they where not using.
For the next three days I was treated terribly because this one specific doctor said I had an illness that I didn't. I wasn't allowed to walk anywhere I had to be pushed in a wheelchair, I was watched at every meal and they check everywhere to make sure I didn't hide any food, if I didn't eat everything on my plate I had to drink the rest of the calories in boost, I wasn't allowed to go to the bathroom by myself, and I wasn't allowed to ever take a nap even though I was less than a week out of my gallbladder surgery and being forced to eat even though it made me in pain and nausea. Each of these days I had to talk to a set of three psychologists as well as do group therapy with two social workers. While in the psych ward I could only visit with my mom for an hour a day under supervision of a social worker and could only call her when they had extra nurses because the phone call had to be monitored because of CPS. While the other kids got two to three hour visits with their parents and could call them twice a day.
On my third day in the psych ward the psychologists called me in and told me that after talking with me and watching my behavior for the past days that they had determined that I wasn't anorexic, they then asked me why I didn't eat at the hospital, I told them that 1. it hurt to eat and it made me sick and 2. the doctors where feeding me 1800 calories via the NJ tube and I just wasn't getting hungry during the day. The doctors agreed with me but also said that the doctor who had me transferred me from Riley to the psych ward wasn't going to release me, even though they had determined I wasn't anorexic, until I was eating 2000 calories by mouth each day as well as she wanted me to be fully off of the pain medication I was getting from my surgery and not on any nausea medications.
All in all it took 10 days for me to be released from the psych ward but that doctors involvement didn't end there. This doctor wanted me to come to see her every week for weight checks, and then see a counselor every other week, as well as see a dietician in her Eating Disorder clinic every other week. And because my mom had to sign and Informal Agreement with CPS that stated we had to go to all of these appointments for the next three months or  CPS would take action against my mom we went to them all, even though they where pointless. 
The end of the Informal Agreement coincided with the beginning of my sophomore year of high school beginning. And while I was no longer going to the Eating Disorder Clinic, I had begun having every other week appointments with Riley's Pain Team because things weren't getting any better with my stomach. I could only eat two or three bites at a time or I would be doubled over in pain and really sick to my stomach.
During this time my family had to go to a fact findings hearing at court to disprove CPS's claims that my mom has medically neglected me, even though I was in the best children's hospital in Indiana when the charges where pressed. So after several talks with an attorney and a session of going over what questions  he was going to ask in court, we got our day to show the judge that CPS was wrong in taking me a way from my mother and that my moms name should not get put into the child abuse index. After waiting several months to hear the outcome of the hearing we found out that my mom was found innocent and all charges where dropped and her name will no longer be in the child abuse index.
As the school year went on I started throwing up food that I had eaten, and started to loose weight like crazy, as this happened I became weak and in general to sick to go to school. After several months of seeing the pain clinic while not actually attending school the pain clinic doctors decided we needed to take the next step and the doctor sent a referral for me to go see the Children's Pain Rehab Program.
Where got a call telling use that I would be evaluated to see if I was a candidate for the Pain Rehab Program on April 11, 2013. On that date I was evaluated by a doctor, a physical therapist and a psychologist. When my mom and I met with the doctor and the other two teams I was evaluated by the doctor said the my issues were more of a medical thing and that I needed to be seen at the main Cleveland clinic childrens hospital by GI doctors and that they had already gotten me an appointment for the next day. The Cleveland Clinic GI set up a bunch of tests for two weeks out because that was the first available time that they could do the endoscope.
We came back to Cleveland on the day that GI was to do the endoscope and we saw the doctor the next day. When we saw the GI doctor she looked at my weight, which had gotten down to 84.5 lbs and said that something needed to be done so that I could get some nutrition into my body. The doctor then had me admitted to the GI floor of the Cleveland Clinic Children's Hospital.  My first day in the hospital they had some tests that they want to run. So the ran some blood work, and then sent me down for an CT scan. Then the next day they put in an NJ (nasojejunal) feeding tube and started to work me up to what would be my full feeds, so that I could go home with the tube still in place and if the tube helped keep my weight up and continued to be the way that I got 100% of my nutrition then they wanted to have the tube surgically placed as a GJ tube.
I spent a total of 8 days in the Cleveland Clinic Children's hospital and was sent home with my NJ tube doing 24 hour continuous feed. For the next two months I was constantly in the ER because I had either thrown up the tube, it had gotten clogged, or accidentally pulled out of place. I became well know to all the nursing, and child life staff in the ER. After two months of dealing with the NJ tube we called my GI doctor so we could get our appointment with her moved up she listened to our circumstances and agreed to see us that day.
During our appointment she agreed with us that I needed and GJ feeding tube place and she set us up an appointment with my surgeon for the following Thursday. We met with the surgeon on Thursday and he did his exam of me and then said he already had me written in on the OR board for my feeding tube surgery the next day. So on June 7, 2013 I had my GJ PEG placed and I spent 5 days in the hospital recovering from the surgery.