Still not using my tube

Things have been rocky recently but I wanted to type and update. I am still not allowed to use my tube and that is leading to several issues, including constant pain and nausea, bloating, acid reflex, and some vomiting. Here's a picture of the bloating after I had eaten dinner just to give you a picture of what i am dealing with.....

 

I am still taking the new medicine they put me on which is helping with the added pain of eating orally but not the constant pain. I am also having and issue with granulation tissue around my tube which is currently being treated with a steroid cream and rashes from the tape that is used to hold my tube in.

My energy levels are still very low and I have been missing quite a bit of school due to me not feeling good or having the strength to go. So far I am, by the grace of God, maintaining my weight but its a daily struggle, if not a minutely one. Prayers would be greatly appreciated because I need all the help I can get right now.

It's Been a While

Well as the title suggests it's been a while since I posted on here and I'm sorry for that but things recently have been turned upside down. This is probably going to be a long post because I am going to try and explain, to the best of my ability, what has happened recently.
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. 

First Week of School

So my first week of school wasn't all that bad. I am hooked up to continuous feeds throughout the day and nobody but my close friends and teachers really know my feeding tube is there. There has been some adjustment from spending all day at home where if something beeps it's not a big deal and where I can just get up and get my medicines when they are due and just pick up things where I left them off, rather than if I need to go take meds or add formula to my feeding pump class doesn't stop if I get up and go to the nurses office. So far I have found out a rough idea of when I need to add formula seeings I can only carry around four hours of formula at a time and I usually get to the nurses office before my pump runs out and beeps. I have only beeped in the middle of class once and that was about the most embarrassing thing ever but really it only led me to miss a little bit of study hall and have a few students ask me about my tube and why it was beeping. The one thing that does suck about going to school in lunch, it's not fun sitting in a room full of students eating while I can't eat. Mainly I have found that if I find friends and do homework the eating kids don't bother me too much  plus I have the choice to go to the library during lunch. The other things I do at lunch is I fill up my feed backpack and take all of my nausea medicines plus my motility medicine. The last thing that I notice about going to school all day is that by the end of the day my body is drained and after I do my homework I am in bed by at least 9:30, which is pretty early for a teenager.  

First day of school as a tubie.

Rude Doctors at tube replacement

So my tube came out once again so once again we rushed to Riley hospital to have it changed. Where once we got down to IR we saw the doctor that's always down there who yesterday was a mr. grumpy pants which made him rude. He gave me to understand that this is the last time he is going to replace my tube with a button if my tube falls out again it is going to have to be a long PEG tube that is stitched in or they are going to have to do another surgery to separate me tubes. He also said that I should be able to do the change while being awake because he does this change on little kids who are awake all the time, and that the tube change doesn't hurt and even if it did I should take any pain killers I should just pray that the pain goes away. This all had me so upset that I was crying by the time the doctor left the room and child life walked in where she instantly went into work mode calming me down. After the change I was glad to be out of that building and leaving the rude doctors behind.

Not Tolerating My Feeds

Recently I have been having issues tolerating my feeds that go through my J-tube into my intestines. Meaning that as I run feeds there are side effects being caused, mine being sever nausea and belly pain. Because of this for the past week or so I have only been able to run two out of the six cans of formula that I need to run in a twenty-four hour day at a rate of 50 mls per hour rather than 60, and then for the rest of the time I have been running pedialyte at a rate of 30 mls per hour, in order to remain hydrated and keep up my electrolytes. But after waiting for days on the dietitian to call us back she finally called yesterday. She decided to change my formula form Isosource HN to Peptamin AF

So far the change in formula hasn't made a difference I am still having increased nausea and pain with my feeds but I have a few more days of the sample formula that dietitian gave us so I am going to continue running it for those days and hopefully that time I start tolerating it better. If not either I am going to have to change formulas again or the doctors are going to have to add a a fourth nausea medicine to my already lengthy list of medications.   

Hospitals Harbor Emotions

If you have every seen the show Grey's Anatomy you know that Seattle Grace Mercy West Hospital is full of different, crazy emotions and you only get to see those emotions for forty-five minutes every Thursday night starting at 9 am. Now just imagine spending hours in a Hospital that specializes in children two days in a row. I realized just how emotionally draining it is to be at a hospital for as long as I am this past week.
 It all started on Monday night when I was standing on my front porch and suddenly there was water dribbling down my stomach and next thing we know my tube was coming out of my stomach. Which looked like this......

Now obviously that tube has some issues seeings the button part is suppose to lie a dimes width from the skin not several inches. In the end we couldn't save that tube we had to put in my emergency one. So with no J-tube running to my intestines I had to go in Tuesday and get my tube fully replaced. 

That day at the hospital started around 10 am and by the time 1:30 came around my mom and I where not too happy with the doctors for telling us to come right in when they intended to fit me after all the scheduled patients. I was a shaking, jabbering, 16-year old ball of nerves sitting in the Day Surgery hearing small children taken from their mothers and fathers screaming crying back into on of the many operating rooms, and seeing the cancer patients come in who for all that it's worth make me feel healthy. Around 1 one of my friends who was near by meet me at the hospital and kept me company while we waited. We ended up being moved down to radiology around 4 pm......six hours after we arrived and where check into the hospital. I was ten times as nervous as I had been at 1:30 and my mom wasn't too happy with whom ever told us to come right in and that we would be able to get in the morning.  At this point I was glad to see the Whitney from child life was waiting in radiology for me to come down. She came in and started doing her thing; getting the story of what happened to the tube, talking to me to defuse the nerves and helping me create a mask that would be used to put me under. Between talking to the nurses, signing consent forms and waiting on the last kid to come out of the room it was now 4:30 when Whitney came back into the room telling me that she had to go and wasn't going to be able to go back and hold my hand while I went under. At the point I lost it and ended up a crying mess, because that was my routine. Walk back with Whitney, lay down on the table, hand her my glasses, take her hand while they start the laughing gas and strap me down to the table, and squeeze her hand and talk until I go under at which point she leaves. At the point the crying made Whitney feel terrible but she had to leave so she helped me tell a nurse I knew in radiology what needed to be done in order for me to feel safe and okay about going under, and then three hugs later Whitney went to clock out and that's right about the time we where told that they where finally ready to take me back. I hugged my friend thinking she was going to be going home once I went under and walked with the nurse who was going back for support back to the room where they would be doing the procedure. Next thing I remember I was awake enough for my mom to come back and she did, followed by the friend whom I thought was leaving. Apparently she got to her car and came back to give me a bracelet she got me and a hoodie I had asked to borrow, which after all of the days stress made me smile. We left the hospital around 6 and finally made it home around 7:30, Which was barely enough time for me to start formula feeds and get in a half a can of formula before I had to stop them at midnight for a test early the next day.

On Wednesday I had to be at the hospital at 9:30 for a tilt table test at 10. All in all that test wasn't too hard they hooked me up to all these different monitors and then had me lay there while they monitored me heart rate and blood pressure. The they moved the table so that I was standing and asked me to tell them about any symptoms I felt. After about 30 minutes the test was over and the doctor came in to tell us the results; the test was negative for any sort of autonomic dysfunction but these is a chance that it was a false negative and about then she left. We got up to leave and that was when my frustration caught up to me and I started crying because I am so tired of being put through all of these medical tests to still not know what is wrong with me. The nurse that was with me felt so bad that she took me back to the room filled with prizes that they usually give younger kids and let me pick out a few things, which didn't help my frustration much but gave me time to stop crying. All in all emotions have ran high while I've been at the hospital this week, and I am frustrated with all that's going on and still not knowing what is going on inside my own body.

Sometimes you just have to Vent!

So I have gone back and forth about posting about this topic, but I have decided that because this is a part of my everyday life with a feeding tube you guys should get to hear about it even though it is rather gross. So I have a tube that goes directly into my stomach as well as a tube that goes into my intestines. Now I don't get fed through the tube that goes into my stomach but I do use it to do something called Venting. This means I hook up a feeding extension to my G-tube and allow the air as well as any stomach contents to come out of my body. Here is what it looks like.......

You can see in the picture that most of my stomach contents is pure bile, but sometimes if I have decided to eat anything by mouth I tend to get that out of my tube as well, many hours later of course. Now why would I vent my stomach when it is such a disgusting thing to do. Well the answer to that is that venting keeps me from throwing up as well as can alleviate my nausea and it also helps with my belly pain.