Maddison Ohs, Tube Feeding

Graduating from the G/J tube

Graduation from Maddison’s G-J-tube to a G-tube

It’s been a long road to get where we are. Even the conversation around changing Maddison’s feeding tube from a g/j to a g-tube felt like only a dream just a few months ago. Yet here we are, the day finally came. March 9th 2019 marks the day we said goodbye to Maddison’s g/j feeding tube, and hello to the new g-tube.

*Video of tube change included*

A little backstory

You’re welcome to familiarize yourself with her full backstory in Maddison’s bio.

Maddison has always required the assistance of a feeding tube to be fed. But back on September 21st, 2017 Maddison was hospitalized for failure to thrive. I shared in the blog post, Hospital Stay 2017, the details of the admission. But in short, Maddison’s  reflux was out of control and caused her to lose a scary amount of weight. We had a gastronomy/jejunostomy tube placed through her existing stoma so that we could by-pass her stomach and feed her into her intestines. All the details about the transition and logistics are laid out in our post, Transitioning to J-Tube Feeding.

A common treatment for reflux is a procedure called a Nissen fundoplication. This is where they take the top of the stomach and wrap it around itself, narrowing the opening of the lower esophageal sphincter to prevent stomach contents from moving upwards into the esophagus as reflux. Maddison’s gastroenterologist wanted to give her time to see if she could grow out of her reflux before considering such an invasive surgery. Feeding Maddison into her intestines would give us time to see what her body would do as it grew.

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No longer needing the J-tube

15 months later Maddison did grow and get much stronger.  We got the thumbs up from both her gastroenterologist and her feeding team to start trial feeding Maddison back into her stomach. We shared in our post, Feeding Update: Feeding into the Stomach how we managed to start the transition back to feeding into her stomach. We transitioned all her feeds to be fed into her stomach within 3 days! Her stomach has grown to the place where she no longer needs to be fed into her intestines – and this is a cause for celebration!

Maddison still has a little bit of reflux. But it’s nothing like what we were dealing with two years ago. Her success with feeding into her stomach has just confirmed that she still doesn’t require a Nissen fundoplication to manage her reflux.

A contributing factor to her reflux is her recently discovered growth hormone deficiency. Since it’s discovery, all of her doctors are convinced she will completely grow out of her reflux with her growth hormone therapy. With her daily injections she is getting stronger, and growing taller at a more expedited rate than before. These things will hopefully reduce and eliminate Maddison’s reflux.

18 months after Maddison had her first g/j feeding tube inserted, we were able to pull it out in the comfort of our own home – with her doctors permission, of course. This has been a day we have eagerly anticipated, as it’s showing how much Maddison has improved.

I’m also a little emotional thinking back to when we first had it placed. Maddison was so, so sick. Because of the tube she was able to grow, and thrive. So to say goodbye to the tube that saved Maddison, I wanted to write and ode to the tube that saved her life. Keep in mind, I’m no poet, but just sharing my thoughts:

Ode to a J-tube

I never thought I would like you,
but over time I learned how much she needed you.

I never thought you would be something to celebrate,
but here we are on our tube change date and my heart is full of thanks.

I want to say thank you j-tube for all you’ve done,
without you, Maddison’s life would have looked like a different one.

You provided her with what she needed, like I hoped you would.
You provided her with nutrition to grow, unlike other feedings could.

The thought of you used to make me cringe,
but your presence in our house became as natural as a syringe.

Yes I know that our natural may be a little strange,
but with Maddison, my view on what is natural has had to change.

The hassle of continuous feeding, and the constant tangle of cords,
all became welcomed in our house as Maddison’s health moved forward.

You helped Maddison in so many ways,
for a total of 529 days.

So this is my ode to you, j-tube.
Thank you for being you.

Video of tube change

Below is the video I was able to capture pulling out Maddison’s old g/j tube and replacing it with her new g-tube button. This video is for entertainment purposes only, and contains images some viewers may find graphic. Watch at your own discretion.

Maddison’s feeding journey has been a long, and bumpy road. It’s never been simple, or straight forward. But we are incredibly thankful that this is where we are on our feeding journey with Maddison. I’m excited to see what the rest of 2019 will bring.

Maddison using her new g-tube

Questions you still need answers to?

Let me see if I can point you in the right direction:

Where did this all start? Maddison’s Birth Story
Why would we want to switch the feeding tube? Feeding Update: Feeding Into The Stomach
How long will she have the feeding tube for?

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