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.