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
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