Syringe Holder

I've been complimented a few times on my syringe holder. I could not live without it. Seriously. It is, without a doubt, the most important tool I use for tube feeding. Why? Because tube feeding is a two-handed operation. One hand needs to hold the tube steady while the other pours in the blend and pushes it in with the plunger. My left hand isn't up to the task so I need the holder to act in its stead. It wasn't my idea though.

Back in 2009, I was part of a yahoo group for tube feeding using blended diets. One of the tubie moms in that group (Maria Cho, if you're out there, I'm talking about you) posted a picture of a syringe holder and said it came in handy for feeding their son. She asked if anyone was interested in it because her husband was willing to make more.

At the time, I'd been unable to swallow for about 8 months and unable to move my left arm a couple years so I was still getting used to my new limitations. I was either trying to precariously balance my tube against the edge of tables while gravity feeding or relying on Betsy for bolus feeding. It was extremely frustrating for Betsy and I. Honestly, I don't know how moms are able to feed squirming kids blended meals. We made enough messes with me holding perfectly still while following Betsy's commands. It was very difficult for Betsy and I to adjust to me being dependent for such basic activities.

I just finished the book Laughing at My Nightmare by Shane Burcaw. Shane has been in a wheelchair since the age of 3 and has been dependent on others for just about every aspect of his life (you should read it if you get the chance; he has a great sense of humor; order it off his website). So I know I'm whining when I describe how depressed I was to need Betsy whenever I wanted to eat. I have a hard time asking for help, and I was reluctant to tell Betsy when I got hungry or when I needed to take my medicine. I was actually losing weight because formula made me nauseous and I hated sitting at the table waiting for Betsy to feed me.  The thought that I could use a syringe holder and not need to rely on Betsy--whose hands were already full taking care of our two-year old--was a revelation. I immediately responded to Maria's post and said I was very interested in getting a syringe holder.

Within a few weeks, her husband shipped one to me from their home in Seattle. That syringe holder, no kidding, changed my life. For the first time in months, I could sit at a table and feed myself. Not only did Maria's family send me that holder at no cost, they also sent me replacements regularly for the next couple years because the plastic clamp only lasts about a year and I was too dumb to figure out how to make my own syringe holder.

But now I know and it couldn't be easier.

Let me walk you through it.

You start with a cheap clip lamp. You can buy them at most hardware stores. I got the one pictured at Lowes:

I used to get plastic clip lamps, but I'm hoping this one lasts longer

Next, you cut off the cord because what sort of syringe holder needs a cord?

Fun project: use the cut cord as a noose for your daughter's Monster High dolls!

After this, you'll need to remove the head of the lamp. This is actually pretty easy. There is a nut holding the head on that you can remove with a pair of pliers:

I have a whole graphics team to label these photos

Now comes the tricky part. Well...it's not tricky for me, but you might have a hard time finding these pieces. Maria's husband used the bolt that held the lamp head in place to attach a metal plate and hook. It's pretty simple really; I just use that same metal plate and hook every time I need a new syringe holder. The tricky part is, I couldn't find those parts at Lowes or Home Depot, so if the plate and/or hook ever break down I'll have to figure something else out. Also, if you want to recreate this engineering masterpiece, you may need to find something else to bolt on there.

Behold: the aforementioned "metal plate and hook"

Admittedly, I didn't look very hard at the hardware store for those parts. They're not too complex so it seems like something Lowes would carry. If you're able to track them down please let me know in the comments.

A little grimy after 5+ years, but still works!

Yes, I did try to get in touch with Maria Cho and her husband to ask them for details about their syringe holder. I haven't heard back. I lost touch with them a few years ago. I remember their child was weaning off the feeding tube in 2010, so I'm sure they aren't even part of the blended diet community anymore. But, on the off chance you know them please extend my gratitude for sending me this tool!

If you don't want to get your hands dirty, there are syringe holders you can purchase online. They're called Jofas clamps:

Behold: The Jofas Clamp

You can order one at their website: www.jofas.net. I have one of these also. The thing I like is that the clamp can handle thicker tables than my homemade syringe holder. I've started to be extremely conscious of table thickness wherever I go. Like The Rainforest Cafe at the Mall of America has tables so thick, even my Jofas Clamp couldn't fit on it, so I had to clamp Jofas to the back of my chair and snake the arm around in front of me. That's another nice thing about the Jofas Clamp. As you can see in the picture, it has a long, flexible arm. This allows me to better adapt to situations where I need to clamp in at more of a distance from my feeding tube.

The downside to the Jofas Clamp is that the flexible arm is not as strong as my homemade syringe holder's arm. When I pour thick blends into my tube, it descends with the weight of the blend. I bought the clamp 5 years ago and I've been assured by the company that they've made improvements and the arm is stronger now. If that's the case then you can't go wrong getting a Jofas Clamp.

I kinda like having both clamps because my homemade one is easier to attach to the table (you screw the Jofas until it's firmly clamped on) and I'm normally not in a situation where I need a long arm on my syringe holder. At the same time, for situations where I need a long arm or for thicker tables, it's nice to have a Jofas Clamp. Hopefully, this post was informative--unlike my other posts, which are pointless drivel. If you have another idea for syringe holders or if you're Maria Cho or her husband, please let me know in the comments!

UPDATE!!! A tubie mom on Facebook recommends "Bendy Armz." Check it out on Amazon: http://www.amazon.com/Bendy-Armz-Attachment-Stroller-Bottle/dp/B00P6WZ7QY/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1426177178&sr=1-1&keywords=bendy+arms. The mom says that they are "the perfect size for 60 ml syringes."

Behold: the Bendy Arm

They look great to me! I'm not sure if it would work for me personally because it seems like it would take two hands to clip the syringe onto the arm. With my holder or the Jofas Clamp, I only have to drop the syringe in place. But this looks like a very handy device for tubie parents!!

UPDATE NUMBER 2!!!!!! Jesse Jones recommended the Jackson PEG Stand, so I ended up getting one and wrote a short review here: http://travelingtubie.blogspot.com/2015/12/syringe-holder-update.html. 

I ate duck yesterday.

Here's my latest confession: I use Twitter a lot (@Traveling_Tubie). This probably isn't much of a revelation if you're a Millenial, or if you're a techno junkie. But most of my friends have never tweeted in their lives.

When I first heard about Twitter, I scoffed at the idea. All you do is tell all your followers what you're doing?? The only people who might be interested in such a thing is the Kardashians--because they're so self-absorbed--and anyone who avidly cares about the Kardashians--because they have no life. Why on earth would anyone care if I tweet that I'm going to get a haircut? Who am I so enamored with that I would check twitter to see what they had for breakfast?

It's not really like that though, and actually it turns out there are certain people I love to follow on twitter. I'm a geek, and I love to read fantasy and science fiction books. I kept this from Betsy until after she married me (Ha Ha!). You can read more about it in my road trip post. It turns out that many of the authors I like (Tad Williams, Patrick Rothfuss, Brandon Sanderson, Scott Lynch, Neil Gaiman, John Scalzi...wait...you don't care do you?) are on twitter and tweet often about the projects they're working on. I love reading their tweets and sometimes they respond if I say something to them. Usually they tell me stuff like, "please stop tweeting me," or "what is wrong with you?" so I'm clearly making an impact!!

I also follow news outlets because I get news much faster on Twitter. During that Australian hostage standoff the other night, I turned to Twitter for news because I could get eye-witness accounts of what was happening. Plus I follow ESPN and CBS Sports because every team I like has a Twitter page and if I can't watch the game on TV, they tweet scores real-time on their feed. I follow the University of Tennessee women's soccer team because Grace and I like going to the games. They keep their Twitter page updated with play-by-play action during every game.

On top of this, I can follow others who inspire me. I'm interested in astronomy so I follow Neil deGrasse Tyson, the Mars Curiosity Rover, NASA, SETI, the 2013 class of NASA astronauts, and the astronauts on the ISS for pictures from space. In terms of tube feeding, I follow Real Food Blends, Vitamix, Blendtec, DrinkYourMeals, and other tubies (my current favorite is Shane Burcaw; check out his book, Laughing at my Nightmare).

But anyway, the point of me telling you this is that I follow the Washington Post's Food page on Twitter. My Aunt (not my real Aunt, but I've known her all my life and I've always called her 'Aunt') is an Editor for the Food Section of the Washington Post so I like to hear their fun recipe ideas.

It's hard to cook turkey for our family because they weigh about 100 pounds (rough estimate) these days and this is way too much meat for the three of us. Even turkey breasts have more meat than we could eat over three or four days. So, I got the idea to try duck this year. Before Thanksgiving, I bought a Peking duck at the grocery store.

The picture doesn't show the dog drooling under the counter

They are the perfect size for two or three people. I've never cooked duck before so I tweeted to the Washington Post and asked if cooking a duck was the same as cooking a turkey. They immediately responded, told me the two don't cook the same, and they gave me a link to a recipe I could use. I followed the recipe exactly and it turned out perfectly.

Looks delicious, if I do say so myself (Aspen was still drooling)

Betsy said it tasted like "really good turkey;" Grace loved it.

We also had rice and a vegetable medley

I put a bunch in my Vitamix, and we still had quite a bit for leftovers today!

Betsy makes me pose like this until it pours out on my lap

If you're not on Twitter, give it a try. If you are, then follow @Traveling_Tubie. I only tweet about vitally important things (like the last time I trimmed my nose hair).