Feeding Tube Awareness Week Feature-Ally+Breanne+Mandi

Day three of spreading some Feeding Tube Awareness up in here! Let’s jump to it, as we have three precious humans to hear from today! First up, Ally! You can find her on Instagram @myhealthquirks!5

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

A: Gastroparesis due to Elher’s Danlos Syndrome

Q: How long have you had your tube/been tube fed?

A: 3 months Continue reading “Feeding Tube Awareness Week Feature-Ally+Breanne+Mandi”

Feeding Tube Awareness Week Feature-Rose+Sam+Ansley

Welcome back! Let’s dive right back in with day two of Feeding Tube Awareness week with my friend Rose! You can find her on Instagram @my.eds!14

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

A: Gastoparesis, ntestinal dysmotility, MALS

Q: How long have you had your tubes?

A: Six months.

Q: What type of tube do you have?

A: An NJ tube and an NG tube.

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

A: If tube feeds work for you it can be a complete life changer! It seems scary but if it can drastically improve your life try to be open to it. Continue reading “Feeding Tube Awareness Week Feature-Rose+Sam+Ansley”

My Story Part Seventeen: The one where I meet Anthony <3

Welcome back!  This is the second to last part of this story.  Thanks so much for sticking around for it!  I’m curious, what would you like to see me write next?  While I have ideas, I am ultimately here in hopes of helping others.  Are you currently having issues with how to tape your feeding tube and looking for a possible new way?  Are you scheduled for a procedure in the hospital and want a list of ideas for things to take with you to make it feel more like home?  Or maybe you aren’t a patient and have a question about something I’ve already mentioned here and would like for me to elaborate on it?  I’d love to hear from you!

Let’s jump back in!

The second trip to Mayo Clinic was just as busy as the first!  There were lots of lab draws and running around to see various doctors, but Aunt Retta and I had fun with it!

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We found a fun restaurant and I won a pizza or something! I mostly just really like this photo.

Continue reading “My Story Part Seventeen: The one where I meet Anthony <3”

My Story Part Thirteen: The one where things started to look up

Wow! What a fun-filled weekend! We are currently waiting at the airport, as our flight plans didn’t work out as they were set to. But that’s okay! I’ve been wanting to have some spare minutes to get on here and post the next part! So here we go!

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Livin’ that Kleenex in the nose life!

I left you with the exciting news that I was starting on clear liquids.  In this post, I have to begin by telling you that 3 days later, suction had to be hooked up again.  While my gut was moving some, my stomach was not emptying.  Things were so backed up that nausea got the best of me and I had to go back to nothing by mouth.  I was bummed.  This was not how things had ever gone.  In a typical hospital visit, I would have been on to mashed potatoes and chicken fried steak!  But this time, I could only dream of eating those things.

Continue reading “My Story Part Thirteen: The one where things started to look up”

My Story Part Twelve: My time at the swanky hospital, UCSD.

Hey everyone!  We are on our way to Sacramento, California to attend a seminar for TPN patients!  We are so excited to have been invited to come to this event and provide input on some new possible products and to learn more about what’s happening in the TPN world!

Jumping in today where we left off yesterday!

The very next day, I was on my way to my new (shared) room at UCSD!  I had my sassy powers all lined up to get into the first private room available!  When I arrived, my new roommate didn’t even wave back when I was wheeled into the room!  (If you’re up on your TV shows – as Stephanie Tanner from “Full House” always said, “HOW RUDE!”)   Now for the good news – this hospital was swanky as all get out!  It felt like a nice hotel. It had wood floors, big palm trees in the lobby, built-ins for the TV and cute little drawers for my clothes and stuff!  And even better, before I had spent a full night, my nurse came in to tell me that my private room was ready!  Oh thank heaven for diligent nurses.

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The hospital lobby! So swanky!

After a couple of days with more x-rays, blood sugar and blood pressure drops, my doctor came in and had a sit down with me.  He told me I needed to start back on TPN.  He said they were going to place a PICC line (remember the last time I had a PICC and didn’t use my arm for the entire week of having it? Yeah, that kind) and get me to a baseline of health with the help of TPN.  I told him I did not want to lead them to believe that I was going to continue on TPN and I wanted answers to how I was going to get better.  But at this point, I did agree that TPN was the safest option.

While I was getting mentally prepared for the PICC line placement (I thought I would have at least a full day to do this since hospital time usually makes things take seven times longer than you’d expect) someone knocked on my door and came in.  They had the terrible cart with them that means PICC line time.  I hadn’t even had an hour to process this mess!  Get out of here!  But no, it was time.

My first question was what I was going to be given so I didn’t remember the procedure.  I can’t handle vein talk. I can’t deal with people looking around on my arm with a sonogram thing to find the perfect vein.  I just cannot.  I knew I wasn’t going to get through this without some help from some drugs.  After we sorted this all out and I was less anxious, I got my second PICC line placed and they got me started on TPN!

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My sweet friend Vicki sent me some adorable PICC line covers that she made! The sweetest.

Continue reading “My Story Part Twelve: My time at the swanky hospital, UCSD.”