Tubie Pad Feature: Dorky Little Etsy Store

Hello! Long time no talk about Tubie Pads! I’m so sorry about the delay on those features. Today we will be talking about Dorky Little Etsy Store’s tubies!

Just as a reminder, here’s a breakdown of what I’ll be sharing!

  • My personal thoughts on the maker’s Tubie Pads.
  • A bit of the maker’s story.
  • The materials they use and special features that sets each of them apart to help you find the right fit for you.
  • Lots of photos to hopefully help you get a full picture of what you are purchasing (on a human, front, back, etc.)
  • Price and where to find the Tubie Pads.
  • Lots of other nuggets of info depending on what each maker chooses to share!

This week I’ll be sharing and will be hearing from, Mistie of Washington state, who started Dorky Little Etsy Store! She sent me some super cute tubies in lots of cute patterns (on front AND back!) untitled shoot0690Web

My Thoughts

I have really enjoyed these tubies! They are made with so much love and care, and with the main intention of helping people in the feeding tube community, which I absolutely adore. Mistie acknowledges the struggle of those of us on a disability fixed income, because she too deals with living on a fixed income. So she makes them with that in mind and prices them accordingly as well.

They launder nicely because they are cotton and very durable in the wash (in a laundry bag of course!)

These would be a go to if I was not having a lot of drainage, they don’t seem to absorb as much as some of the others that are a bit thicker. But there are definitely days when I do not need a thicker tubie!

They’re simple, sweet, well made, and I absolutely love that there is a patterned backing, I love details like that! Continue reading “Tubie Pad Feature: Dorky Little Etsy Store”

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 My Weekly Dressing Change Look Like?

Hello again! As promised last week, I’ll be sharing photos documenting my dressing change process today!

To those not on therapy, what does this mean? It’s essentially clean up day. It’s taking the sticker part of my central line off, cleaning it, and re-dressing it (putting the sticker part back on!)

For those on therapy, my process is not the “norm,” but then, what is? Lots of us who have had central lines for many years become allergic to soaps, dressings, adhesives, and all kinds of things over time. Therefore, my dressing change might look completely different from yours! But guess what, we are all different and that’s what makes life fun 🙂

Understand that I say these things because it is terrifying to share these types of processes to the world because people attack things they do not know or think you do wrong. Maybe it looks like I’ve put my sterile gloves on wrong, laid something here wrong, but I promise I have a strong education. If you’d like to have a conversation about something, I absolutely welcome that. But please use kindness. I always say these things to protect myself, but I love sharing so that people can get a look into what this life looks like.

Of course, this is not me saying this is the one and only right way! This is just the way that has worked for me over the past 8 or so years. Never change your process without speaking with your infusion nurse or doctor who gives you instruction!

Anyway, let’s hop to it!

First and foremost, I put on some great music so that I can be entertained during the whole process. Once those sterile gloves go on, it better be a solid music selection on!

Then I wash my hands super duper well and dry them off with a clean towel or paper towel! This is what it looks like right before I start a dressing change (ha! I look so thrilled.)dressing change and tpn start03962webI open up my dressing change kit, put my mask on, then lay all of my supplies out all nice so that they are accessible and remain sterile for the change. ( I do not keep my sterile field sterile, I drop my sterile outside items into my dressing change kit tray. You will see my flush syringes on my sterile field, don’t freak out! I know they are not sterile, promise.)dressing change and tpn start03970webdressing change and tpn start03973webdressing change and tpn start03978webdressing change and tpn start03982web Continue reading “What Does My Weekly Dressing Change Look Like?”

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?”