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. 

Granulation Tissue, School, and an Upcoming Test

I had a doctor's appointment last Tuesday and it was suppose to be a pretty simple visit, my family doctor was just checking in and prescribing enough of my medicine to last about three months, but it wasn't such as easy visit because I had been having issues with my tube and there wast this bright red flesh growing around one side of my tube. Now, when I went to my GI doctor I tried to show her the growth because it was seeping blood and rather painful but she wasn't interested in anything but telling us we need to treat the eating disorder that I don't have. So my family doctor decided to take a look at the growth, and determined it was something called Granulation Tissue or some people call it Proud Flesh, but anyways he took a picture of the spot and left the room to call my surgeon and ask how he wanted to treat it. Here's a picture of the granulation tissue that I took to send to my nurse, you can see the red spot to the left of my tube is the granulation tissue.

After contacting my surgeon my family doctor said it was both of their decisions to use some silver nitrate and burn the granulation tissue as to force it to scab over and heal. So my doctor got out these q-tip looking things with black stuff where the cotton should be and went to work using the silver nitrate to burn the tissue. It didn't hurt me while he was doing it be afterward it hurt really badly for about 24 hours, or until the burn part actually fell off, I know kinda gross right? Now I have to go back on Tuesday to my family doctor so he can look at the area and possibly burn it again. Sounds like so much fun.

Ok enough about doctors appointments and the burning of my bodily tissue on to school. So as of right now I am going to be going back to school full time starting on August 14. I am extremely excited about this but at the same time I am slightly worried. I haven't been to school full time in about a year and going back scares me because I am afraid I am not going to be able to do it health wise. I mean yes I am feeling pretty good but I don't do near as much in a day as I would have to do if it was a school day, and on the day's I do more I feel like I got hit by a bus the next day. The other thing I am worried about is going to school with my feeding tube, I was made fun of when I had my NJ tube and am afraid that they will make fun of me now because of my more permanent one, but I guess I won't know how any of this is going to go until it actually happens......So cross you fingers and say a small prayer that when school gets here the transition is smooth and doesn't make anything any worse. 

The last thing I am going to talk about is a medical test that I have coming up this week. The test is called a tilt test and I honestly don't know too much about it other than it is going to be checking for  Autonomic Dysfunction, when is where they nerves in you autonomic nervous system don't work properly causing all sorts of symptoms that match mine. I will post more about that test on Wednesday after it is ran. 

Just a Poem

Below is a poem I wrote to day while I was feeling kind of down about all this medical stuff.......

I am trapped,

inside a body,

ravished by pain,

and filled with Fears.

Kept alive,

artificially by a tube,

overcome by weakness,

and covered in tears,

but sill I fight.

Despite the odds,

I still believe,

that I have life ahead of me,

and that someday something,

will quiet my fears.

A Wish

I have a wish to meet Ellen DeGeneres. Now the most obvious way to make this wish to come true is to contact The Make a Wish Foundation. Sadly in my cause making my wish come true isn't that easy. I have no diagnosis, so Make a Wish won't grant me a wish because a doctor won't sign a paper saying in it's current state my illness is life threatening. So my family and I have decided to try and make my wish come true on our own. This means raising quite a bit of money as well as contacting Ellen and trying to get her to hear my story and agree to actually meet me. Both of these feats aren't going to be easy. My mom and I have decided to make kool aid stands at our local parks, but doing this isn't easy with me being sick. Most of the summer has gone by without us being able to host a single kool aid stand. Another way we are wanting to raise money is by selling bracelets that I make, but once again with me being sick it is a slow process, I have only made four bracelets so far and it's going to take a lot more than four to pay for a trip to California. Then you have the actually meeting Ellen part, somehow I have to get her attention and have her say she would be willing to meet me. I know she has met other kids with illnesses on her show but I have no clue how they got to meet her. I have already submitted my "My Health Story" video to her twitter page but so far I haven't heard anything back from her. So to me it seems like we are going to have a long road ahead of us just to make one big wish come true.

Some Days This isn't Easy

There are days where I quite honestly don't want to keep fighting my illness. I want to take out my feeding tube and let whatever happens happen because I am just so tired of fighting. Tired of my life revolving around feed and medicine schedules, doctors appointments, and hospital stays. Tired of being strong and not letting on that all of this does actually gets to me, and that I do worry about what is going to happen to me in the future. But I can't stay down for too long or it sucks the life out of me. I have to find the strength from someplace deep with in me and continue to fight this big scary thing that currently doesn't have a name.

My Story Video

It's been a long week or two!!!

Well I know I haven't posted on here for a little while but let me explain by saying it's been a long week or two full of emergency hospital visits, doctors appointments, sickness and school.
On Monday the first of July, around 9 pm I was giving a medication through my J-tube and suddenly was showered in the medication. Meaning my tube was clogged and due to have no place else to go the medicine shot out of the feed port in my extension while I tried to push it through the med port. Here's a picture showing which port it which.....

 

 

Now just imagine a liquid medication mixed with water rocketing out of the feed port with enough force not only to shower me but also end up on my ceiling. I called my mom to the kitchen and after cleaning it we did everything in our power to try and unclog my tube. We tried coke, warm to hot water, cold water, trying to push the liquids through, letting the liquids sit in the tube, aspirating the liquids in hopes of getting the clog to come out with them and NOTHING worked. So my mom called the on call IR doctor and we got an appointment for my tube to be changed at 9 am the next morning.

When we got there to have my tube changed I was greeted by a room full of familiar faces from my first two tube changes. They took me back used General anesthesia to make me sleep and changed my tube. When I woke up the Radiologist came in and told me and my mom that they had to changed the size of my tube from and 18 French to the bigger 22 French because the 18 French had flipped out of my intestines and was back into my stomach which is what caused it to clog, and that hopefully the 22 French wouldn't do the same thing because it was a bigger and heavier tube. We where satisfied with what we had been told and went home.

I was feeling pretty crummy Wednesday the day after my tube change so the doctor called in some pain killers to help ease the pain caused by the bigger tube, but by late afternoon we realized I was running a fever of 102. Now for me I run fevers at random with no other symptoms as a part of what ever is causing my stomach to not work. We ran pedialyte through my tube for 24 hours and just watched for more symptoms to show up but as we suspected none showed up. So we started running formula feeds around 7 pm and that's when we noticed I wasn't tolerating them too well, they where making me severely sick to my stomach so as per instruction of the on call radiologist we stopped feeds and where scheduled to go to the hospital Friday morning to check tube placement. Well over night we tried to hook up and vent my G-tube, which goes to my stomach and noticed it wasn't working at all.

When we got to the hospital on Friday morning they said that my tube wasn't out of place but that the tube would still need to be changed due to the not working G-tube. So once again the changed my tube and sent me home but seeing they didn't have and Mic-Key buttons in my sized the had to place a GJ PEG tube which is the type of tube I have issues with the balloons busting on but

we left with hopes that this time that wouldn't happen and we wouldn't be back in a few days.

A picture of me and Megan one of my favorite child life specialist at the hospital.

 

 

The week end went over without an issue but on Monday I had a trip to see my GI doctor, and lets just say that didn't turn out well. She refused to listen to us and didn't even do an exam on me so now we have to find a new GI doctor who will actually listen to out list of concerns and also keep looking for what is making me so sick.

On Tuesday night I was laying in bed and suddenly heard a rush of air as well I felt something leaking onto my stomach, needless to say the balloon on my peg tube broke and the pressure in my stomach blew the entire thing out causing me to have to shove an emergency G-tube into my stoma all by myself which can be quite mortifying. Once again my mom called the on call radiologist and had it set up for my tube to be replaced under general anesthesia the next day, and Once again I showed up to Interventional Radiology to find a room full of familiar faces waiting to meet me as I was their last patient of the day. My favorite child life specialist came in to see me and talk down my nerves before she escorted me back into the procedure room and talked to me and held my hand while I went under. They changed my tube an I woke up in recovery, talked and joked that we needed to stop meeting this way before they sent me home with a brand new tube and good wishes that I wouldn't have any issues with this new tube.

 



A picture of me and my favorite child life specialist right before we walked back to the procedure room on Wednesday.

 

 

Well now you see how hectic the last week or so has been I hope you understand my lack of updates and I hope that you had a good Forth of July weekend and that you week was much better than mine.



Enteralite Infinity Pump vs. Kangaroo Joey Pump

During the time I have had my feeding tube I have had both a Enteralite Infinity Pump by Moog and a Kangaroo Joey Pump by Kendall. So in this post I am going to compare and contrast the two pumps based off of my experiences with them.

Screen
Kangaroo Joey: The screen is a decent size and well lit so it's easy to read from virtually every angle, plus there are red, yellow and green lights beside the screen that tell you the status of the feed at a glance.
Infinity Pump: The screen is small and can be rather hard to read from an angle, so unless you are eye to eye with it, it makes it hard to read or even see if the pump is still running.

Priming:
Kangaroo Joey: The pump has an auto prime button which primes the line in seconds, also has a button you can push to prim incase you have an extension suck as mic-key extensions and this button also primes very quickly. Also has a flap that can be lifted to see the pump rather than having to unzip the backpack to turn off alarms
Infinity Pump: The prime button is Super Slow and if you don't keep it pushed in the entire time you are priming, which can be a while, it beeps obnoxiously. You can also prime the line without the pump which is much quicker than priming with the pump

Ease of programming:
Kangaroo Joey: Everything on this pump is pretty easy to program, this includes the feed rate, and volume of the alarm
Infinity Pump: Most everything on this pump is easy to program this includes the feed rate and how much should be fed at one feeding but to change the volume of alarms isn't so easy. You have to hold the on/off button and the + button for 1.5 seconds and then use the prime button to scroll up and down, which isn't exactly user friendly or easy to remember.

Alarms:
Kangaroo Joey: The alarm on this pump is rather high pitched and wakes me up easily when there is an error in the middle of the night so I can fix the problem and go back to sleep.
Infinity Pump: The alarm is lower pitched than the joey's alarm and didn't wake me up when there was an error in the middle of the night so can be a good pump for babies and younger children whose parents run the pump for the through out the night and day.

Line Kinking:
Kangaroo Joey: the tubing on the pump set seems to be a bit thicker than the tubing on the infinity pump and there for get kinked less often. After I switched pumps I have gotten less alarms because my tubing has kinked either in the backpack or while I am sleeping.
Infinity Pump: The tubing is thinner, so in my experience there are more alarms because of kinked tubing in the backpack or during sleep.

Noise:
Kangaroo Joey: This pump is a little noisey when running, sounds rather like a pencil sharpener when running,
Infinity Pump: This pump runs pretty quietly, it's a lot quieter than the Kangaroo Joey

Size:
Kangaroo Joey: This pump is larger and more bulky as well as heavier than the Infinity pump is
Infinity Pump: This pump is small and compact

Backpacks:
Kangaroo Joey: The backpack to the kangaroo joey is pretty straight forward it has a pocket that the pump fits in as well as several straps that help hold the feed bag in place. This backpack is bigger than the one for the infinity pump which makes it more comfortable to wear for a teenager or adult
Infinity Pump: The backpack to the Infinity pump is a little more confusing, I had the pump for about 3 months and I still had issues getting the pump securely into the backpack. This backpack is rather small which makes it rather uncomfortable for a teenager like me or and adult to wear, it is more suited towards littler kids.


So to come to a conclusion there are good things and bad things about each pump, in the end I would suggest the Infinity pump for babies and younger children who are mobile, the smaller pump and backpack are well suited for this use. While I suggest the Kangaroo Joey pump for active teenagers and adult because the teenager and adult doesn't have an issue with the pump being a bit heavier than the infinity, as well as the teen and adult is going to be more comfortable in the larger Kangaroo Joey backpack.

A Middle of the Night Emergency

Having a feeding tube required you to be prepared for some very sudden trips to the ER. One of these sudden trips happened Monday night. It was around 12:30 a.m. when I sat up to put more formula into my feed bag and my feeding tube just started coming out of my stoma (hole created by doctors so that the tube can pass from the outside of the body to the inside), I grabbed a hold of the tube and kept it from coming out any farther but with what little that had happened the balloon that holds the tube in was already on the outside of my body. Here's what it looked like after I taped it down so it wouldn't come out any farther.......

Sorry the picture isn't the best but circled in the blue is the balloon that should be on the inside of my stomach, and circled in green is the outside bumper that should be right next to my skin.

After I taped the tube down so it wouldn't come out any farther I went downstairs and woke my mom up telling her that I needed to go to the ER. She got up and called the ER to tell them we where on our way while I packed an overnight bag and grabbed the information we needed to give to the ER department.
We arrived at the ER around 1:30, it takes us about an hour to get to the hospital, where I was taken back and evaluated. It took them several x-rays, on balloon check (the balloon had burst) and many hours for the doctors to decide that I needed to be admitted until they could change out my tube down in Interventional Radiology the next day. So at 6:30 I arrived at my hospital room where I was hooked back up to the IV fluids I had been getting in the ER and the nurse asked all of the admittance questions. Around 7 am the nurses came in to tell me who my day nurse was because it was time for shift change. Then around 8 am one of the GI residents came into my room to do an initial assessment on me before the entire team of GI doctors rounded.
When the GI team came in there where about 10 different doctors all crammed into my tiny hospital room, and this is when they went over the days plan which was to stay on IV fluids until they could get me down to Interventional Radiology where I would be sedated and have a new GJ tube place, then I would come back to the floor wait an hour and start pedialite feeds at 20 ml per hour and work my way up to my formula going at my rate of 60 ml per hour and send me home that night.
Their plan was exactly how the day worked out I  had my new tube placed which ended up to me a Mic-Key button instead of my long PEG tube. My Mic-Key button looks like this......

 

 

The change in tube was a huge upgrade, this one is much more comfortable and lighter than my old one. I got back up onto the floor at 4:30 pm so I had to wait until 5:30 to start running the pedialite, then after going at 20 ml per hour they bumped me up to 40 ml per hour of the pedialite. Then they had to go looking for my formula to be able to bump it up to 60 but in the end they just ran pedialite again at 60 ml per hour for and hour and then they started to get my discharge papers together. By the time all the discharge papers where filled out and my nurse pushed me in a wheel chair out to my mom car it was 10:15 at night and we where free to go home after filling my prescription of pain medicine to help with the pain changing the tube at only 2 and a half weeks out of surgery caused.

 

ER Trip

A few days ago I got to make the trip to the hospital that nobody with a tube wants to make; a trip with a clogged tube. Now how the tube got clogs is kind of a funny story you see I had been at the hospital several days before to have to tube looked at and to have the three anchors that hadn't fallen off taken off by on of the nice G-tube nurses. While I was at that appointment I had said something about not being able to get the formula gunk out of the beginning of my tube near the port. So the nurse went and got some long handled q-tips and showed me how to clean the excess formula out of the tube with that.
So two days later on Wednesday my tube had a bunch of formula gunk in the same spot so I got one of the long handled q-tips and went to work on cleaning, now I though while I had the q-tip in my tube in the first place that it would be ok to take my time to thoroughly clean out my tube, well I was wrong because all of a sudden the was some sort of suction that sucked the cotton part of the q-tip off of the handled lodging it in my tube. So now not only was my tube clean but it was clogged. My mom and I tried to get that cotton piece out everyway we could think to try. We tried sucking it out with on of the big 60 ml syringe, we tried digging it out with a bent paperclip, but it seemed no matter what we did the cotton tip was still lodged tightly into my tube.
This is the time my mom decided it is now the time to call the hospital's ER and try and get the on call GI doctor to tell us what to do. She called and somehow get routed to the on call interventional radiologist instead, which is the person who would change my GJ tube had the need arise for it to be changed early or they would change it every 3 to 6 months on a schedule. My mom tells the radiologist what had happen and she said not to come in Wednesday night because they would just admit me until morning but that she would have one of the interventional radiologists working the next day call my house and set up a time to see me and try and get the cotton part out or change my tube.
Thursday morning the radiologist called at the start of her shift and by 10:30 we where there admitted to the hospital and in the Radiology department. I was put in the Interventional Radiology waiting and prep area while they cleaned a room for me to go into. Before they took me into the room to take some pictures to get a better look at how and where my tube was inside my body the radiologist came in to look at my tube. This is when she had an idea, she told us that she had seen some tiny eye surgery hooks down in the OR that she thought would be able to go down into my tube and get the cotton tip out. She called down to the OR to have one brought up when child life had heard I was in the hospital and decided to stop by. Now, I'm at the hospital a lot so I know most of the child life specialists who work there so it's always like catching up with old friends when I come in to a different part of the hospital where a different child life person works and Thursday was just like that. We talked about how my tube had moved from my nose to my belly and how not even a two weeks into having it, it was already clogged. We where all laughing when the radiologist came in with the eye surgery hook.
The doctor opened my tube and went to work, trying to dig the cotton out of my tube while the nurse, the child life specialist, my mom, and I waited holding our breath because it was going to be much better on me if the doctor could get the cotton out rather than changing the whole tube and leaving me more open to infection. Around five minutes later the radiologist accidently yanked on my tube, which hurt, but that was all it took to help her get the cotton out of my tube. The crisis was fixed by a doctor who could think outside of the box and one small painful pull on my tube.

How long do you have to have a feeding tube for?

That is by far the most asked question, I have gotten in the week and three days I have had my feeding tube. I've had friend, family and even complete strangers ask me this and the only answer I have for them is I don't know, because honestly I don't. A feeding tube isn't a simple thing like my braces that we knew exactly how long the process is going to take. There are so many variables in the equation of me and my feeding tube that there is no humanly possible way to guess, I have hopes for how long it's going to stay in but those are just hopes. In reality the amount of time I have it for depends on when or if my stomach starts to tolerate higher volumes of food, when of if the doctors find a diagnosis for what is making me so sick, and many other smaller reasons that you wouldn't normally think of like weather I can keep my weight and nutrition up with just eating by mouth. This situation of not knowing when the feeding tube is coming out isn't just a me thing, there are kids all over the United States and the world who have feeding tubes who don't know when they will be able to eat by mouth, so all in all while the unknown does scare me a little bit I know that there are other people in my shoes and that somehow they are learning to cope with this new life style just like I am.

GJ PEG feeding tube

So in this post I am going to show you what type of feeding tube I have as well as tell you what each of the ports does. First I will start with what kind of tube I have.....My tube is a GJ PEG tube meaning it is a long tube that goes into both my stomach and my jejunum, which is the beginning of the intestines. Here is what my tube looks like......

This picture was taken right after my surgery, you can see the square of gauze that sits between my skin and the flexible rubber bumper that keeps the tube from sliding farther into the opening the surgeon made, or the stoma. Then there is the long tube that connects to the three ports that I use to feed myself or take medications.

This is what the three ports on the end of my GJ PEG tube look like. They are all clearly marked with where they lead. The on that say Bal. is used to inflated and deflate the balloon that is inside my body and is use to anchor the tube and keep it inside my body. Now for the port marked Jejunal is the port that leads to my intestines, this is the tube that I get feed through, and actually you can see the purple connector that hooks my tube up to my feeding pump. This is also the port that I take all of my liquid medication through. Then the last port is labeled Gastric and is the port that leads to my stomach. I don't use the port for anything other than venting, or draining, my stomach. I hook up a bag that is designed to catch stomach bile up to this port and let my stomach drain, this helps with a ton with my nausea and vomiting.

 

 So there is a little bit of information about my tube and how it works. If you have any questions about anything I have said in the post just put them in the comments and I will answer them as soon as I see that they are there.

Coke is a tubie's best friend

Ok now I know what you are thinking, if I can't eat by mouth then how on earth can I stomach coke? Well the answer to that is I can't, just like all other foods coke would put me in more pain and make me sick if I drank more than a swallow by mouth. So now your wondering what I do with the coke, am I right? Let me explain a little bit about feeding tubes and the formula that goes through them before I tell you how I use the coke. The formula that goes through my tube has a tendency to collect together inside my tube and form a "gunky layer", for lack of a better description. I try to do everything in my power to keep that "gunky layer" from forming inside my tube, meaning even though I am on continuous feed I pause my feeds and flush my tube with water several times a day, but even with doing that sometime I can't prevent said "gunky layer" from forming. When the layer has formed it makes it hard for me to give medicines through the tube, flush the tube with water and my pump even alarms because it senses the pressure caused by the layer of gunk. So, here's where the coke falls into this equation, it clears the "gunky layer" right out of the tube. It's work sort of like drain-o but for my feeding tube. All I have to do is flush my tube with about 25 ml of magical coke and cap off my tube so that the coke sits in my tube for about 10 minutes. After that ten minutes I flush my tube with water and bam, no more "gunky layer". Doing this helps my tube stay clear and not get fully clogged because if it did that would mean a trip to the ER and if they can't get it unclogged a placement of a new tube. But don't worry that would require a second surgery it would just require a radiologist because the hole the surgeon made, or stoma can be reused so all the radiologist has to do is place the new tube in the existing stoma and take a picture to make sure everything is in the right place.

My First Week with my Tubie

Whew it has been a long week! I got my feeding tube on June 7 and as of yesterday I am a week out of surgery. I thought it wasn't going to be a big change from my NJ tube but boy was I wrong, a lot of things are different now. They change my formula so I can now only hang it for 4 hours rather than 12 hours like my old formula. My GJ PEG also takes more upkeep than an NJ does, I was told to clean mine twice a day and flush it four times on top of flushing before and after meds which I didn't have to do. But on the upside this tube has turned out to be a blessing because I can now vent my stomach if I am feeling nauseas and my nausea goes away. Another reason it is a blessing is because unlike my NJ tube it doesn't run down my throat and bother my gag reflex making me throw up more than normal. 
As for the pain it was pretty intense for the first five days so I was kept in the hospital for extra time on IV morphine then they finally found a pain plan that could be continued at home. Through out this week the pain really hasn't gotten any better, it is still painful to walk, bend over, laugh, cough, or sit up for longer than 5 minutes. But in the end I am glad me and my mom went through with allowing the surgeon place my tube because all of this pain and adaptation is going to be worth it in the long run.

Welcome to my blog

Welcome to my blog, A Teen and her Tubie. I am going to be blogging about life as a teenager who has a chronic illness as well as a feeding tube. The best thing for you to start out reading is "My Story" which is a link at the top, that explains what I have gone through in the last year to reach where I am today, and under the "Diagnosis" tab you will see a list of y symptoms and one possible thing doctors think I might have.
I have to admit I am new at this blogging thing so bare with me for the first little while. You may ask why I decided to make this blog well the answer to that is simple, to raise awareness as well as to help some of my friends understand what I go through on a daily basis.