Feeding Tube Awareness Week Features-Mellie+Allie+Kate

Hello! Happy last day of Feeding Tube Awareness Week! We are finishing off this week with three lovely tubie ladies who have shared amazing insights into their lives as humans with feeding tubes! Let’s not waste any time, welcome Miss Millie! You can find her on Instagram @thegirlwhocanteat where she shares more of her adventure!10

Q: What diagnosis led to you needing a feeding tube?

A: Gastroparesis

Q: How long have you been on tube feeds?

A: Around 5 years in total, I had to be on TPN for 2 years and even though at times it is a struggle with pain from the J feeds, I would much rather be a little more uncomfortable than to have to worry about infection constantly.

Q: What type of tube do you have?

A: I have a straight J-tube and also a G-tube that allows me to decompress air, etc.

Q: What would you love to share with someone new to tube feeding?

A: That no matter how hard things may be, remember the importance of your feeding-tube, being different isn’t bad. Continue reading “Feeding Tube Awareness Week Features-Mellie+Allie+Kate”

Feeding Tube Awareness Week Feature-Sara+Montana+Sarah

Hello! Welcome to day 4 of Feeding Tube Awareness Week! Feel like you’ve heard it all? Well I’ve got news for you! There’s always more to learn from each different tubie. We’ve all had such different experiences, even if they are the same medical device!

Today we start off with my friend Sara Grace! She has had a very different experience with feeding tubes, her’s did not go well and ended up failing. I love hearing her perspective so much. You can find her on Instagram @chronic_sgb!sara g!.png

Q: What diagnosis led to you needing a feeding tube?

A: hEDS, rumination and gastroparesis

Q: How long have you been tube fed?

A: J-tube duration was 2 months, TPN duration 8 months

Q: What type of tube did you have?

A: J-tube (long)

Q: What would you love to share with someone new to tube feeding?

A: Please listen to your body! Doctors may tell you that chronic debilitating site and muscle pain is normal for tube healing, but if the pain increases or doesn’t go away, tubes were not meant for you! (And that’s okay and NOT YOUR FAULT)

Q: How has your feeding tube helped to improve your life?

A: My feeding tube was supposed to be my saving grace, but instead it caused months of traumatizing and debilitating pain that has left me with scar tissue and ended up decreasing my motility further.

Q: What is a complication you’ve had that you never expected to happen with your tube?

I went to the Mayo clinic to have my feeding tube placed by the best, and none of the GI doctors on my team were aware of the potential complications that come from placing tubes in hEDS patients.  Having finally found a GI doc that specializes in EDS based gastroparesis, he was able to explain why it was that my tube failed.  After a barium swallow to confirm, he found that (due to EDS) my intestinal tract crumples at the bottom of my pelvis instead of staying in place when I sit/stand up or walk around.  This made my tube placement incredibly painful, as it was pinning my small bowel to my skin and just hanging there. Continue reading “Feeding Tube Awareness Week Feature-Sara+Montana+Sarah”

What does TPN even look like?

HELLLOOOOO!

Long time no write, y’all. Sorry about that. I had a very very rough few months from August till November. It was all one little pesky infection that made it’s way to my central line and into my lungs after not being tended to for so long. It was very unfortunate and included three admissions (does not include additional ER visits) to my local hospital, and one final hoorah at my big hospital in Dallas after the local doctors really made a mess of it and somehow didn’t catch that it was an infection. Even with unclear cultures they deemed “contaminated” about 883 times, persistent yet random fevers (even up to the 103 range) and all kinds of symptoms that yelled infection.

But that’s all said and done and I am cleared from my blood and lung infections after a month of IV antibiotics and a new central line placement. And I am back!

bye
bye bye old Hickman 😦
new line new me
new line, new me

All I’ve got to say is thank goodness for good friends. Those who help you celebrate Halloween inpatient, play games with you, come to chat, and bring you a puppy to love on in the hospital! jojopuppy
Continue reading “What does TPN even look like?”

DIY TPN Backpack

Hi everyone! I missed you all last week. We took a couple of days away in Eureka Springs, Arkansas. And get this, we stayed at a haunted hotel! I’ve got photos to share from that soon. This week I’m sharing a post I’ve been so excited about, how I easily transform any everyday backpack into one that will work for TPN! Let’s get this backpack party started!

backpack21

Materials needed:

  • Backpack of your choice- Ideally with a wider opening if possible! I also prefer to have several pockets on my pack.
  • 9 inches of 1 in. wide nylon webbing (sold at most craft stores by the yard, I recommend getting a little extra to have some room to play with)
  • 2 inches of 3/4 in. wide Velcro (I bought this by the yard, and got a 6 inch piece just to be safe)
  • scissors
  • sewing thread
  • embroidery thread
  • sewing needle
  • pins
  • ruler
  • lighter

Continue reading “DIY TPN Backpack”

My 15 Reasons to go to the Oley Conference

Are you familiar with the Oley Foundation?  If not, and you rely on nutrition support in any way, they’re a great organization to get to know. I love the way they state who they are on their website, “…the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking.”  Learn more about Oley here.

They put on several conferences throughout the year, but their big annual one is the hot topic for discussion today.  While I’ve only been to one conference in 2016, it was absolutely life changing and I cannot wait for this summer’s conference in Memphis, Tennessee.  Here are my top fifteen reasons you should go to the Oley Annual Conference this June.
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