My New Feeding Pump

So this past week I got my new feeding pump, bags, formula  and pole. The pump, bags and formula came on Tuesday, but the pole didn't come until late yesterday due to it being on back order. They had a sick driver yesterday and wanted to know if they could bring it on Monday, but I said no I couldn't wait because I was hanging the pump and back on my walker. The pump is lightweight, but with the formula and water mixed together, the bag is about 2 pounds. So with my muscle and joint difficulties pushing the walker with the back hanging was difficult. The pump I have is called a Kangaroo Joey (I nicknamed it KJ, silly I know) and its blue and very lightweight. After her surgery my grandmother even picked it up with her good hand and was amazed how lightweight it is. Its a pump that typically children use, but adults with muscle and joint issues use it, because it is the lightest weight pump. When I go out it is just fine, and not very heavy, which is nice. 

The doctor and I both agreed on the pump due to the fact that every time I would bolus feeding, in which you pour the formula into the tube at the times you would normally eat, I would get so full that after each feeding I would have to sit and let it digest for about 30-45 minutes, and wasn't getting enough nutrition, only about 700-800 calories a day, which is not nearly enough, so I was dehydrated and even more fatigue than I usually have, which is pretty fatigued. I have been losing weight, about 30 pounds, which has not been a problem for me due to the fact I have gained over 100 pounds because of all the steroids. But I have been losing about 4 pounds a week and the doctors are concerned about the rate I have been losing weight, so they wanted me to increase my calorie intake to get more nutrients, and so I can lose weight at a healthy rate. The pump has allowed me to do that. Another benefit of the pump, is that I don't have to use the syringe as much, except to flush before I hook up, and when I am done feeding, and when I do my medications, as they have to be crushed and given via the PEG tube through the syringe. But due to my continuing difficulty with my joints and muscles the syringes can be difficult, so doing them not as frequently as with the bolus feedings, makes it a bit easier. 

When beginning the pump feeds, I had the option of either feeding throughout the night or during the day. I was hesitant to feed at night, because with my very high aspiration risks, I would have to sleep propped up like one would in the hospital. With my joint and muscle issues, that would be very uncomfortable. A lot of individuals who do night feeds find that a hospital bed is necessary to be propped up correctly, and I don't want that. My formula is similar to a baby formula and smells and stains like baby formula. When tube patients due night feedings it can be common that when you roll over the formula can leak everywhere and you may not realize it until there is a big mess. There is also getting up in the middle of the night groggy and fumbling around with the pole to go to the restroom or get a drink of water, and possibly tripping. With my unstable joints and muscles, and my very high fall risk, I didn't want to deal with that. After talking with others on feeding tube groups on Facebook and hearing their experiences, I decided that day feeds were the best choice for me. My doctor wanted me to be hooked up to the pump and feed 12-14 hours a day. Im starting with three cans of formula, and working up to four. For each can of formula you mix one can of water. With the pump I can feel it going in throughout the day, but I am not as stuffed as I was before, which is great. I am getting more calories, enough to lose weight at a healthy rate, and no longer dehydrated. I occasionally have a small frappacino, milkshake, or a little bit of ice cream for taste. But because I'm doing continuous feeding I can't have more than a few bites. 

When the pump first arrived and I was hooked up to it, it was like reality hit. It became more real that for 12-14 hours a day, everyday I am basically hooked up to an IV. I never thought in a million years that I would be on a feeding tube at the age of 21. But I know that even though it is a sign of my continuing difficulties, it is keeping me alive and as healthy as can be. Because of having the tube I have connected with other tube patients and groups on FB, and have made new friends. Even though no one really wants a feeding tube, but it is helping me. In a way it is blessing, and that is something to thank God for. Many may not see it that way, but as its keeping me here, I see it as one. 

Note: My grandmother is doing well. The surgery went as planned, and the doctor said her bone was better than expected. She is doing better, still in pain and tired. But the home health nurse and PT are working with her. Thank you for your continued thoughts and prayers. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Girls Getaway To San Antonio

About 3 weeks ago, my best friend Emily and I when on a two night girls getaway to San Antonio, and stayed at the Riverwalk Marriott. We had an absolute blast, and it was a much needed getaway as I have had a rough summer. I left the day after being released from the hospital, where I spent two nights, and had a new PEG tube placed. I had told the doctor that I was leaving on Tuesday, and was determined to go, and he promised me I would be home by Monday and could go, though that Monday I got home at 5:30. We drove down in the van, so I could have my power chair, which was a godsend. We got to San Antonio, but with  two Marriott's on the Riverwalk it was confusing to find, but we enjoyed driving around. I hadn't ben to the Riverwalk since I was much younger, and don't even remember it. So it was nice to go while I can really enjoy and appreciate it.
      Our first night we there we explored the hotel, as we were on the concierge level, so they have a separate lounge area. We just lounged around, ordered screwdrivers and had some cheesecake that Emily brought and watched The Other Woman with Cameron Diaz and Leslie Mann. A nice night in. We love cheesecake because we both like The Golden Girls, and they eat cheesecake. I can't eat it much anymore, but occasionally when I'm with Emily. We woke up a bit late, and then went and walked around the Riverwalk and had lunch at the Rainforest Cafe and split a Mai Thai. We continued to explore the Riverwalk, and the weather was nice, but as the day wore in it got hotter. That afternoon we hung by the pool, and for the first time in a couple of years, which was awesome. We just sat by the pool under an umbrella and read are girlie magazines. We then went back down to the Riverwalk and went to a local Mexican Restaurant, which was fun. We then walked (I rolled) back up to the room, ordered dessert, screwdrivers, and had a nice night in. I was tired, so Emily took a run around the Riverwalk at night which she said was pretty, and did come back safely.
      The next day, we took our time and packed up, and checked out. We had past the San Marcos & Tanger Outlets on our way to San Antonio and decided we were going to stop on our way back. We had lunch at the Outback Steakhouse, which has really good Pina Colada's surprisingly. I got a Vera Bradley bag to carry all my formula and feeding supplies, Emily got some cute jeans, and I had gotten some gifts for my grandparents (a belated Mother's & Father's Day gift), some hand cream from Crabtree & Evelyn that my grandmother loves, some Ralph Lauren Polo aftershave that my grandfather loves. My mom's birthday was the day we left for SA, so I got her a pair of earrings done by a local glass artist.
      We had a BLAST on our trip, and are saying we want to make this a yearly thing. Were saying we want to go to Dallas and go to a country concert next summer. But who knows? After having a rough summer it was so nice to getaway for two nights with one of my best friends. What a great trip with a great friend.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Miracle Treat Day

This Thursday, August 14th is Miracle Treat Day at Dairy Queen's all across the country, in which $1 from each Blizzard sold goes towards benefiting the local Children's Miracle Network Hospital in your area. Dell Children's is a Miracle Network Hospital. Having spent a lot of time at that hospital (as well as other MNH's) and my rheumatologist being there, this is a very important cause to me. Every year since I became sick, we have gone on Miracle Treat Day to support this wonderful cause. The Children's Miracle Network is a wonderful cause, and one that I support. I encourage you, your family and friends to go purchase even a mini blizzard, and have a $1 donated to the network, which supports DCH. Plus its a great excuse to have a frozen treat to cool off with during this heat. As usual my family and I will be going (since I can still eat ice cream). Thank you for supporting this wonderful cause, and God Bless!!!!


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

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