So to start off with my tube fell out AGAIN, not a good thing and that happening we took another trip to the hospital, not knowing that that trip to the hospital would start weeks of agony for me and my family. When we got to the hospital the IR doctor who is the doctor who puts in my tubes came in to talk to us, telling us that he would not put in another tube with a balloon on the inside because we had had so many issues with the ballooned tubes. So instead he made us agree to putting in a tube without a balloon that was held in by to stitches. He also refused to do the tube change with me asleep, so I went into the change fully awake. Now being awake wasn't as bad as I thought it was going to be until he got the tube about half way in and then all of a sudden it was painful every time he pushed it in, then after he got the tube in he had to do two shots of lideocane in my stomach to put in the stitches. In the end I sat up and got a good look at what he had put in my stomach and was shocked. Here is what the tube looks like.....
Now they sent me home from the hospital before the lideocane wore off and without even testing the tube, so when I got home we hooked the tube up to a drain bag and immediately noticed that the g-tube or the tube into my stomach didn't drain at all. We also couldn't use a syringe to aspirate anything. Then the numbness wore off and the pain became intense. When we found this out my mom started calling the IR department at the hospital and the feeding tube nurses trying to see what to do. In the end everyone pawned it off onto my GI doctor to make the call and that didn't happen until about Wednessday and then her conclusion was that I needed to be admitted to the hospital so they could watch my tube. My family didn't understand why there needed to be an admit done because I wasn't in eminent danger and what should have been done could still be done outpatient. So my GI doctor scheduled an appointment for me to see her the next day.
The next day we all had a bad feeling about the appointment but went anyways because I was still in a lot of pain and the tube still didn't work which was making everything worse. The called me back into the rooms where they see patients and when the doctor came in she didn't come alone. She came with her nurse manager and a social worker. Our bad feeling got worse. We expressed our concerns to the doctor and she didn't really seem to listen and then came out and said that I needed admitted to the hospital for observation of my tube. My family disagreed and that's when the had Child Protective Services come in and tell us that we had no other choice than have me admitted or they would file charges against my mom and sign the papers myself. Well this was not our first issue with CPS so my mom agreed to have me admitted.
When I got up to the ward they where going to keep me on, which was my normal ward, we went through the admissions process and then settled in for the night. The next day the doctors came in and looked at me saying they where going to try and get my g-port of my tube to work and then they left. In that day my nurses couldn't get anything to aspirate out of my g-tube no matter how hard they tried so the called the team that works strictly with tube and had them come in. They also couldn't get anything to come out but decided to leave the tube to gravity and attach it to a diaper. Now not only could the nurses not get the tube to work but they also had never seen a feeding tube that looked like mine. Through the next several days I even had several nurses that where not assigned to me come in and look at my tube because they where talking about it at the nurses desk. The next day the GI doctors came in again and said that they where wanting to see how much I could eat by mouth as well as that they wanted to try and hook a farrel bag to my tube and see if that would get it to drain. There was only one issue with that my tube is not made to take a feeding hook up it's made to take a IV hook up so it ended up taking the nurses several hours and many phone calls to find a bag that would hook up to it, and when they found one the my nurse came in and hooked up while telling me that we needed to call my tube what it actually was, a PICC line which is and IV line that goes straight into the heart. The third day I was still in intense pain so the doctors decided to cut the stitches that where holding my tube in and use tape to hold it in which helped some of the pain but not the pain I got while eating. The nurse on shift ended up calling them back in the middle of the day and they put me on a new medicine called Bentyl which helps with things like IBS and chrones. Then for about two days they literally left my tube hooked up to the bag and kept giving me the new medicine on top of all my others and watched me. Finally they decided that my tube honestly didn't work so they where going to change it, they ordered my feeds to be stopped and nothing to be taken by mouth so that the change could take place. The next day a lady from IR came up and become a part of the list of people that tried to get the tube to work saying the IR doctor wasn't ready to change the tube and that was the end of the tube change. Now the GI doctors hadn't came in that day and finally he came in around 6:30 and began talking. Basically he told us we had three options 1. Go to a mental ward because the doctors thought I had an eating disorder. 2. Get a second opinion by being transferred to another hospital or 3. go home and get a second opinion outpatient. By the time he was done talking he had decided that those three options wheren't good enough and that we needed to give him until the morning to come up with a better option. In the morning he didn't even come into the room and see me he stopped my mom and grandma in the hall and told them that our only option was for me to go the the mental ward because they where not comfortable with me just going home. That was the point in the seven day stay that I lost it. With the threat of CPS all ready investigating we got all of my stuff ready to go to the mental ward and I was ambulanced over there. We went through the admissions process while I was still pretty upset and then my mom had to leave. There they stopped my J-tube feeds and started me on a plan to work up on eating, treating me exactly like an anorexic. The doctors didn't listen to a word I said, I was constatntly in pain and sick to my stomach but they didn't care so after several days i stopped fighting and decided to be the one to take the high road because the doctors wheren't going to. For the first about 7 days in the mental ward the doctors couldn't tell me anything about the plan or even what I was fully being treated for, they kept saying they where trying to figure out what was going on. So I continues doing everything I could to go home, participating in all the group things, telling the therapists nicely that I was miserable and eating everything even if I didn't feel good. While in the mental ward I was weened fully off of my nausea medicines which made me feel worse but as I said the doctors didn't care about how I felt they just kept telling me there was nothing wrong with my "gut". Which I thought was rather odd because they left me on my acid medicine and the medicines for my stomach motility and the Bentyl the had just started which was actually helping some. After 10 days I was released from the mental ward and told not to use my tube at all.
As of now I am still forcing myself to eat all though I am still sick to my stomach and in sever pain, have no energy whatsoever, and am being made see doctors who put me into the mental ward and kept me there even though they where and still are wrong.
