Thursday, June 20, 2013


My niece, Madee, who is exactly six months younger than my Ana Jain, has Eosinophilic Esophagitus, which basically means that her throat is inflamed, making eating next to impossible, making weight gain next to impossible. Poor girl.  Two days ago she had a feeding tube placed to help her get bigger. I feel so bad for her! She is only 5!!
It brings back so many memories for me. I had a love/hate relationship with mine. I hated that I needed one at all.  I hated/hate the whole situation. But it was doing the work that my body could not do. I would like to forget it but I also want to remember it. So..
I got my first G tube just a couple of days after my stroke. I figured it would only be for a few days. Again, denial. I barely noticed it at first because I wasn't really moving and I was sedated much of the time so the noise of the pump didn't bother me. After a few weeks, when I moved to Rehab, I began to notice it more. It was a tube that hung out a few inches from my belly and it could be connected to a longer tube from the pump. I would just tuck it in my waistband and then pull it out when I got hungry or thirsty. During therapy I got thirsty a lot so I would pull it out and someone would suck water from a bottle into a big syringe and then "push" that into my tube. I was a little confused because the feeling of thirst was so oral to me, so I would chew ice and then suction it out.
A few weeks into therapy, I was sitting on a bench, leaning over to get a pen, when suddenly I was really sick. I had to just lie back and wait for them to wheel me up to my room. That night was terrible! Every time they would put meds, water, whatever in my tube, it would cause serious abdominal pain. I didn't even want pain medication because it hurt too much going in.
The following morning when Dr. McLaughlin came in, my mom told him that she thought my tube had gotten knocked out of place. He said that it was really unusual ("People walk around with these things for years") but she was probably right. They did an x ray and sure enough!
They then took me in for yet another surgery and placed another one. But the pain was still there even after. They took another x ray and found that they had accidentally placed the tube in the wrong spot. So, they did another surgery and made a huge incision and really got a good look before placing it exactly right. Unfortunately, after all the trauma, my stomach had shut down and they were not sure that it would ever start working again.
But that was not the only problem. After all the meds and food had gone into my abdominal cavity instead of my stomach, I had developed a serious infection that, I later learned, was life threatening. So, I had yet another surgery to place a tube in my back to drain out the infection while being given heavy antibiotics through my IV.
After the infection was cleared up, they placed another tube that was actually two tubes, called a JG tube. It protruded a few inches from my belly and then came to a y. One side went to my stomach and the other went lower, to my small intestine.
That stayed in for a long time and I had very few problems with it. I just hated the sound of it working all night and the smell of vanilla from my food still makes me queasy.
Luckily, my stomach started working again but we found that I had much less reflux using the "J" port into my lower intestine and I didn't have to always sleep sitting up, as I did before.
The tube got knocked out of place months later when I was violently ill. But the surgery to put it back was short and sweet. Another time it got clogged with medication. Not all medication is liquid so most has to be ground up. Unfortunately some of the particles got stuck together and wouldn't move. So off to the ER I went. Guess what they used to unclog it? Coke! It worked wonders. The most exciting time was when I was transferring from my wheelchair to my bed and I knelt on the tube and yanked it out. Yummy. It was stitched in place but apparently I broke those and the whole thing came out into my hand. Another trip to the ER where they replaced it once again.
That time they put in a Mic-Key button. That didn't protrude but instead was flush with my belly and a tube locked into it from the bag (feed bag) hooked to the pump.
That one gave me no problems at all. That may have been because by that time I was starting to eat and used my tube only occasionally.  I kept it in out of caution, for about a year after I started eating exclusively by mouth. It never bothered me, didn't show under clothes, etc. so it wasn't really an issue. But the day when I finally had it taken out was a tiny step forward on the long road to healing.
All this talk of feeding tubes reminds me that I have yet to start dinner and my kids won't like that!! Better go!

1 comment:

  1. Thanks for sharing all of these details. I often wonder what it feels like for Dakota. He has the Mic-Key button and it has only been pulled out a handful of times but we have been able to put it back in without needing surgery...luckily. That is SOOOO horrible that you had SO many horrible issues with yours. I can't believe they put it in the wrong place that many times...what the heck!!!