Kailana

Kailana’s mom, shares her honest and raw feelings about how tube feeding has impacted their family and her advice to all newbie Tubies that are going through similar situations.

 Tell us your story. What is your background? What does your family love to do?

We are a former military family who has settled in Colorado. We've lived here for 14 years or so, and 3 of my 4 children were born here. We enjoy hanging out with our pets, playing games, reading, and listening to music.

Please tell us about Kailana's health journey.

Kailana was born full term, our only kidlet who was not premature. She loved to eat as an infant but just could not grow. She kept losing weight and nobody could figure out why. Tests never gave us any solid answers, and 8 years later we are still trying to figure her out. She has hypotonia, gastroparesis, chronic constipation, and more. But she's a bright kid with a fantastic sense of humor!

What was your initial reaction when you first learned Kailana would need a feeding tube?

Concern. I was worried about the NG tube and how it would impact her. She did not handle the NG well at all, and was constantly ripping it out. We were quickly offered the option to change over to a g tube and it was the best option she could have!

What would you like to say to other Tubie families or individuals?

I would say that just because they have a tube, doesn't mean it has to be used. I've heard a lot of people over the years who are concerned that their kidlet won't eat by mouth with a tube, but they absolutely can! Kailana gets the majority of her nutrition by mouth, and we use the tube for meds, fluids, and extra calories. Also to vent her belly.

What advice do you have for a Newbie Tubie?

Take a deep breath. Know that the tube will get pulled out. Guaranteed. You will pull it out on accident, they will pull it out on accident AND on purpose. These things happen to everyone. It does not make you a bad person. Just know that it is going to happen and it will be ok!

How did you tube feed before the FreeArm Muscle?

We used a backpack and an IV pole. We still use the backpack for school and such, but the FreeArm has been an absolute lifesaver for doctor visits and hospital stays. I can clip it to her stroller or wagon and keep an eye on her feeds while she hides under her blanket or whatever. I can also move it around the house and not have to worry about constantly tripping over the IV pole.

How did you talk with your DME to see if they could provide you with a FreeArm and bill your insurance? What was that process like? Do you have any advice for families?

I honestly just sent a message to my DME (Aveanna) asking if they had the FreeArm and what did I need to do to get one? They were super quick to reply and say that yes, they have them, the only color they have right now is pink, would we like one? It was really easy, thankfully. The advice I would give other families is: it doesn't hurt to ask. The worst they can do is say no. And maybe they will start to carry them if they know there is interest!

Where is your favorite place to use your FreeArm Muscle and why do you love it?

Doctor appointments and the hospital. I love that it is her favorite color (pink), I can hook both a feed bag and a Farrell bag to it at the same time, and it holds the pump securely. I don't have to worry about winding cords or anything kinking, it clips right to the handle of the stroller and the wagon, and it doesn't take up much space. Honestly, I have been recommending the FreeArm to everyone who is looking for an alternative to the IV pole!