Life With A Feeding Tube

Sorry I haven't posted in awhile, things have been so crazy since issues with the first feeding tube requiring two hospital stays and a second brand new tube being put in, my mom moving to Bastrop for a new job in a small town outside of Bastrop called Molten, and then I was gone for two nights on a girls getaway to San Antonio with one of my best girlfriends (that will be my next post). I'm now back at my grandparents and just trying to get back into a normal routine. Thank goodness that my new feeding tube is working well, as it has been an adventure dealing with all of that.

I originally got my first feeding tube on July 3rd. I was a lot more sore than I expected, but as I've never  had a feeding tube, I didn't know what was normal or not. The doctors or nurses didn't do any teaching with the tube, because they new I had a home healthcare company and said that the home health company takes care of the teaching, providing supplies, formula, a dietician, and such, so that was what I was expecting since I told the home health company I was having one put in. A nurse came on July 4th and I was in excruciating pain, but she said that it wasn't the home health companies job to do what the doctors said, and that is what some of there patients had been told. After she left I was in more pain, nausea, and feeling miserable. I had no nutrition whatsoever and was not doing well, I could barely walk to the restroom. That Monday the nurse came again and all I had was two 30mL feedings of Pediasure (since we had no "real" formula). The following day, Tuesday, I was doing real bad and got so sick I threw-up which is dangerous for me because I can aspirate. I couldn't even walk to the car to go to the ER and my mom had to call the ambulance. My blood pressure was very low, I was running a low grade fever, was tachycardic, and dehydrated. The GI doctor noticed my tube had been pulled out by 3 numbers, approx. cm., and he readjusted it, and I was admitted. A dietician saw me and gave me the right formula, although I am still not where I should be with my calorie intake. When they gave me the full amount I got so sick that I needed IV anti nausea medication. I have been strictly told by my GI doctor not to throw up, not try not to, but don't, and get on top of nausea right away. Things had settled down and after two days I was discharged.

After I was discharged I spent a lot of time at home resting. My fatigue was immense, most likely due to not getting adequate nutrition , and I was still in pain. I really was just not myself and could not do much except go to my doctors appointment, although two days after the first discharge I did get to spend the Saturday with my dad, stepmom, half-brother and sister at Barton Creek Mall, which was great and I had a fun time. Getting used to the tube was challenge since the only thing I'm allowed to have by water is thickened water, and ice cream, milkshakes, and thickened drinks, all not very often. My mom and grandmother were given me some a bit more, in order to try to get my nutrition up. At first my mom didn't want to eat around me, which was a nice thought, but I can go to restaurants (I did with my dad and stepmom and siblings and I was fine a just sipped a virgin pina colada) and sip a thickened beverage or ice cream, and I sit with my family while they have dinner. I love the smell of food like my grandfather's hamburger's, and smells are key, as some studies say that smell is up to 50% of eating. I get so full easily now, and it can take me a whole day to finish a small or medium shake. The good thing about my feeding tube is that it is essentially a liquid diet so I'm losing weight and have so far lost about 15 maybe 20 pounds. I'm hoping to lose 40 more.

As I thought things were going well with my feeding tube I started having more issues with it on Saturday, and called the home health company and the on call nurse came out. She called the on call doctor for the practice that put in my feeding tube (the doctor that put in my feeding tube is a hospitalist with Austin Gastroenterology, and my regular GI doc works only part time on Tuesdays and Thursday's with Austin Regional Clinic). It was by coincidence that the on call doctor was my grandfather's GI whom he really likes, and he said to go to the ER. I was not happy as I was to leave on Tuesday for San Antonio. I went to the ER and the doctor there, who was one I had seen twice before and liked, called the hospital GI that put in the tube, and they ordered an Xray. Because it was not quite 6 weeks since I had the tube put in it wasn't "mature enough" so they couldn't just change it in the ER.
So I was admitted, and the following day the GI doc came and looked at him and said it "fritzed" at him, thats the term he used, and wanted to take a look at it with the camera the next day because he was getting mixed signals from the X-ray and when he looked at the tube. I told him I was leaving on Tuesday and he said after the procedure I could go home and go on my trip. Due to the fact that I was a work-in my procedure didn't happen until like 4:15 Monday afternoon. After looking in the camera, he determined I had whats call "buried-bumper syndrome" and the bumper came completely out, after the tube had been pulled. He tried to adjust it during that first visit but the damage was already done. When I woke up after the second tube had been placed there was literally almost no pain, only a little soreness, the tube worked great, and got to go home in time for my trip. The tune is working well, except the original formula they put me on, Jevity 1.2 (1.2 means 1.2 calories per mL), I am apparently allergic to, so the dietician wants to switch me to Nestle isosource 1.5. With the 1.5 I won't need to have as much formula as the 1.2 to get my calorie intake.

The tube works great, and I am adjusting to it well. I went on my two day trip without any issues with the tube. I don't miss eating itself due to it being so unsafe and not enjoyable for me anymore. I really only miss tasting things, which the occasional frozen drink or shake will tackle. I know that getting this tube was the best decision I made. I prayed about it a lot, and the Lord led me to make this decision. For me, the tube enables me to not worry about one less thing and that is such a relief for me and my family. Hebrews 2:13 says, "And again, I will put my trust in him…." I really love this verse, because it reminds me to put my trust in God again, just as I have done before. And thats what I did when I decided to have the feeding tube/PEG tube (which is the specific type of tube that I have) put in. Even though I had some issues with the first one, overall I know that it was the right decision, and that reaffirms my trust and faith in the Lord. 

Note: As I said earlier, my next blog will be about my two night girls getaway to San Antonio. 


Joyful Love
        &
Blessings In The Lord
Alexandra K. Acosta