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.