Awareness Topic: Coping with Tubie Friends

Some how I got my days and posts switched up so I am posting what I going to post from a prior day here. This is easily done with multiple apts in a week, having your life constantly turned upside side down with back tracking steps, and trying to fit everything that needs to be done plus fun into your life so the kids continue to love life. This fits here perfectly after last night and the pictures of Zach and Ellie helping make our first batch of Tubie Friends.

Topic: How is coping with a feeding tube made easier with a Tubie Friend?

Kids with Food Allergies states coping with a g-tube can be difficult for children. The site talks about several mothers who have performed “surgery” on stuffed monkeys with the goal to help make coping easier for their children. Once the surgery was completed the children learned about their feeding tubes, tube care, getting medication, and other treatments through medical play. These mothers have their children gained better coping skills because of their Tubey Monkeys.

Another such program Gabe’s Chemo Ducks started for the same reason. Back in 2002 Gabe was diagnosed with cancer, and his mother trying to help him understand what was going took a stuffed duck, added a chemo port, and through play he began to not only understand but found comfort in his medical toy. Eventually, this blossomed into a non-profit organization reaching out to hospitals across the nation.

Just like the mothers within Kids with Food Allergies and Gabe’s Chemo Ducks, as a mother I too have that creating Tubie Friends have helped my children learn to cope with their medical issues. For nearly eight years our home has been blessed to have Tubie Friends in our home. Our children have lovingly fed their babies and stuffed animals. We have made many Tubie Friends over the years. Our children have learned about tube and site care, feeding, button changes, giving meds, nebulizer treatments, other medical treatments. Our Tubie Friends have had sleep studies, IV’s, nebulizer treatments, blood pressures taken, hearts “listened to,” blood taken, and surgery.

When going into surgery the child sees their Tubie Friend being put under too then they wake up with their beloved Friend at their side. Their beloved Friend has “awakened” with them with an oxygen mask on just like they have. This helps to reduce fear both going into the OR and waking up in the recovery room. I have found the lengths that the Children’s Hospital staff goes through with these children amazing to not only make the children feel more comfortable but also confident with all the procedures and oftentimes invasive procedures they must face.

Tubie Friends have been found in the school classrooms, school nurse offices, with new caregivers, sometimes new doctors and nurses, home health nurses, and are wonderful teaching aids. They teach about the care of the child. Tubie Friends are often found with specific tubes, wires, ports, IV lines, feeding tubes, oxygen tubing, sleep apnea probes, pulse-ox monitors, anything and everything relating to the child.

When a child seeing their Tubie Friend with just as many tubes and wires as he or she has, they do not feel as different and gain confidence. This confidence is further gained as self-care skills improve concerning the tubes and wires all over the child. Nurses and care givers can have the child clean or “feed” their special Friend reducing anxiety levels. Doctors and nurses can use the child’s friend to explain in advance what procedure will take place. As the child gets older he or she can use their friend to explain to their friends what is going on and why they have so many procedures, tubes, and wires.

Because Tubie Friends have been such an asset to our family we have teamed up with http://www.facebook.com/tubiefriends to help other families get Tubie Friends as well. What is Tubie Friends?

Tubie Friends was started by a group of moms whose children have been or are currently using a feeding tube as a primary source of nutrition. We're currently working with several Children's Hospitals across the country to provide stuffed animals with feeding tubes to as many children as possible, preferably before they go in for surgery. We've seen what a difference something like this has made for our own kids and want to help make the transition from eating by mouth to eating through a tube as easy as possible. In addition to bringing comfort to the child, these "Tubie Friends" can also be used as a teaching tool for family, friends and caregivers.

This year I have three children that want to have Stuff a Toy birthday Parties so we can get stuffed animals with feeding tubes then donate some to John Hopkins Children’s Hospital and others to children for Tubie Friends through the Tubie Friends group. Our first party will be near the end of May, one will be on Halloween night, and one around Christmas. We are hoping to toss in a couple more parties throughout the year as well.

The kits we will be using will be from https://www.bdaybears.com/teddy-bear-and-animal-kits.html and will come complete with an animal, t-shirt, birth certificate, heart, and stuffing. While there are 24 animals to choose from we will likely give party guests only 1-2 animals to choose from making the purchasing easier for us.