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:
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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?
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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:
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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.
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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.
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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:
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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."
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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!!