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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, February 8, 2011

Feeding Tube Awareness

 February 6-12, is Feeding Tube Awareness Week.

This website was created by parents for parents, other family members, friends and strangers, to educate and to bring awareness. The website has good information, resources, family stories and practical tips and other general information of interest. Check it out.


There are a lot of misconceptions about feedding tubes. I would like to take the time to share our experience.

Timmy has had his feeding tube for 4 years. His tube was placed after his 2nd hospitalization with pneumonia. The doctors suspected that the pneumonia was due to Timmy aspirating. A swallow study showed no aspiration. We opted to go ahead with the feeding tube placement. We felt that it would be beneficial in the treatment of Timmy's diabetes and to administer medications.

The decision to have the feeding tube placed wasn't an easy one for us. At the time, we were so overwhelmed with the day to day care of Timmy's other complex medical needs. We felt that by having the feeding tube, we would only be adding more stress to our lives. In the end the pros outweighed the cons.

At first, we too had a lot of misconceptions. After speaking with Timmy's Gastro-Intestinal Doctor and other families who have children who have a feeding tube our fears and misconceptions we put to ease.

*We like to do a lot of travelling. We thought that by Timmy having a feeding tube we would be restricted as to where or how far we could go from home. Actually by Timmy having a feeding tube, we have opened up more travel possibilities. And travelling with Timmy is a lot easier. We don't have to worry about trying to find a resturant which has soft foods of the consistancy that Timmy can eat. We can give Timmy formula via his feeding tube over a 15-20 minutes and off we go. He has been feed. No worries.

*We had heard that "most" children who have feeding tubes, their feeding tube stomas stay infected all of the ime. In our case this isn't true. Over the past 4 years, Timmy's feeding tube stoma has never been infected. As long as the stoma is kept clean and dry, this cuts way down on the risk of an infection. We also apply a protective barrier cream (Nystatin or Bactroban) twice daily, which has helped.

*Some people are under the impression that those with feeding tubes can not eat orally. In our case, Timmy can and does eat and drink orally. Timmy's feeding tube was primarily placed to administer daily medications, to help us better manage Timmy's diabetes and to help keep him hydrated when he is sick and refuses to eat/drink. There are some children who can not eat/drink orally. The list of reasons are long, but a few examples may include, possibility of aspiration, cleft lip/palate, lack of muscle tone in the neck/face oral sensory issues.

*Some people are under the impression that a child who has a feeding tube can not take a bath or go swimming. This isn't true. Timmy takes a bath every night. He has been swimming many times and even to the beach. As long as the feeding tubes balloon is properly inflated, which creates a seal around the feeding tube stoma, no water can get into the body.

*A child who has a feeding tube can have "tummy" time on the floor to play. Timmy loves to lay on the floor and he has never complained about the feeding tube hurting his stomach. We have not noticed any redness or bruising after Timmy has spent a while playing on the floor on his stomach.

If a child has reflux, the child's gastro-intestinal Doctor may suggest when placing the feeding tube that a Nissen Fundoplacation be preformed as well. This is a procedure in which the bottom portion of the esophagus and the top portion of the stomach are "tied" off to prevent food from re-entering the esophagus from the stomach. (acid reflux)

Some parents have stated that if they feed their child too fast via the feeding tube, this causes the child's reflux to become worse. We have noticed this as well with Timmy. When we feed Timmy via his feeding tube, if we feed him over 15-20 minutes, this reduces his reflux. Timmy also had a Nissen Fundoplacation when he had his feeding tube placed, but we think that the Nissen is failing and needs to be revised. In some medically complex children, having to have the Nissen Fundoplacation revised is a possibility. The revision is a surgical procedure, which may require the child to have to be hospitalized for a few days following the surgery.

Help spread the word to bring awareness and to educate. So that those who have feeding tubes can one day be treated as an equal part in society.

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