- Meet Consumers/Patients
|Tube Feeding Tips: Issues and Requests|
We often receive inquiries about specific issues and requests for ideas or solutions to unique challenges. Just prior to the annual conference in San Francisco, we received a request for information about dressings for a mic-key on a 17 month-old boy with multiple medical issues who was starting to belly crawl. The movement the child was attempting was causing his mic-key/stoma area to become irritated. Additionally, the child was sensitive to adhesives, and tape had to be avoided. Working with a home care team, they came up with trying a product called “Pro-Net”, a tube of stretchy netting fabric that is often used when casts are put on limbs. Their success was only partial, but they continued to experiment with wrapping multiple times and were satisfied with the result. She cautioned leaving the netting on for too long, as they encountered some skin breakdown. I posed this question at the Enteral Nutrition Workshop conference session, and some other ideas emerged, including:
A helpful tip on cleaning and unplugging tubes:
I have two sons who are g-tube fed and I have found a way to clean and unplug connector tubes for buttons. Pinch the tube between your thumb and the dull side of a table knife, and run the knife down the tube exactly as if you were curling a ribbon. This will unplug most plugs, it will completely clean the crud out of the tube, and it only takes 5 seconds. I had tried using just fingers or fingernails, but it takes longer, is less effective, leaves a lot of crud behind, and can hurt your fingers. The knife works beautifully. Try it.
A reader’s recommendation followed by a question:
My son is a TPN patient. He is six years old and uses the CADD pump. He was having a hard time with the backpack the home care had given us to use. It was very big and bulky also very heavy for him to carry. Luckily, he would be hooked up at night. His nutrients run for 12 hours. We ride quads and looking at a catalog for apparel I came across a pack. It’s a hydration pack, it’s reservoir holds 70 oz. of water. It is designed to be worn on long rides. It is light weight and designed to distribute weight evenly. With many adjustments you can make fit comfortably. I took out the reservoir and I put the bag in its place. I then ran the line through a whole in the bottom. The pump was then placed upside down in the pouch at the front of the bag. I didn’t need to modify it in any way and it works perfectly. Maybe another child could benefit from this information. It’s called a Camelbak this particular bag in called “lobo”. Here is a link to their web site http://www.camelbak.com/rec/recreation.cfm. They carry many different styles. I hope this can help someone else.
My son has Intestinal Lymphangiectasia, this is a rare disease that affects children. I have started a web site to give parents support. Littleleakers.com. Can you tell me if there is anyone with this disease that you know of?
Thank You for your time.
Simi Valley, CA
To communicate with Alecia about Lymphangiectasia, drop her a note through the “comments and suggestions” option on her website, www.littleleakers.com.
A word to the wise:
Please print this in your LLL as I think others should be aware that this practice goes on and they should protect themselves.
Last fall, I spent 54 hours in the hospital for a line infection. I had a peripheral line placed and then a PICC placed for TPN and antibiotics. One morning, after my infusion was complete, the IV pump beeped incessantly. After ten minutes waiting for a nurse, I disconnected the tubing and then went looking for a nurse and flushing supplies. I found a cart outside my room with some supplies but no saline. A nurse came a moment later and pointed to a communal 1 Liter bag of sodium. “We use this for flushing lines,” she said. I had no choice but to allow her to administer it. I phoned my sister and said, “If the doctor is not going to discharge me today, please come and bring my single dose sodium chloride vials so I can flush my own lines.”
After discharge I spoke with the infectious disease doctor and he said he was aware of this problem but there was little he could do.
In the future, I will carry my own supplies. Just the thought of sharing a 1 Liter bag with several nurses and patients gave me the creeps. Not all nurses use the BEST technique. This practice has probably led to other BSI. I feel very fortunate that I did not contract another germ.
Robin Lang-TPN consumer
3/2/2017Riding the Tube
2/9/2017Mums team up for "tubie" support