Syringe holder update

I did a post a few months ago about my homemade feeding tube holder. I converted it from a cheap clamp lamp I got at Lowe's, so I don't need to hold my syringe while I eat and I can do everything one-handed.

My friend, Jesse Jones, recently told me about another syringe holder that's been around for a while, the Jackson PEG Stand (http://www.jacksonpegtubestands.com).  I was initially put off by the price of this syringe holder ($250!!!!). I wrote to the company and asked if it was made of titanium, but they never responded.  Despite the cost, I really had to get this syringe holder. The one I have, and the Jofas Clamp, need to connect to a table or some other surface that's not too wide, but not too flimsy. The beauty of the Jackson Stand is that you don't need to be tethered to a table. You just put the stand between your legs and sit on the base.

See their handy promotional video

This allows me to eat independently in places I wouldn't normally be able to eat, like on a bench or out in the woods camping, or sitting at my gate at the airport, or at our Crossfit Christmas chili cookoff last night:

Unfortunately can't blame the stand for allowing me to drink too much beer last night

So now I don't need to worry about the width of my table when I go out to eat. The Jackson PEG Stand is a game-changer for me and I highly recommend it if you have the means (that's a big "if," I know).

FNCE 2015!

A TALE OF TWO FAMILIES

The Bombacino's

Julie and Tony Bombacino have two children.  Their youngest, A.J., is four years old.  He's been diagnosed with cerebral palsy, global developmental delays, autism and epilepsy.  Due to his condition, he is still unable to walk or communicate.  He also eats through a feeding tube.  When Julie first started feeding him at home, he couldn't tolerate any of the formulas his doctor prescribed.  So, she started blending all his meals up in a Vitamix.  This proved to be time consuming, but it worked, so the family endured.

Julie and A.J., who is also Superman

Then, on a family trip to Disney World, while spending most of her time blending food for her son, Julie had an idea.  What if there were commercial, shelf-stable blended meals for tube feeders?  Not formula; REAL food, with REAL ingredients like she blended at home!  Julie went through all the steps of starting a business: work with nutritionists and food scientists to develop meals and get them approved by the USDA, get investors and launch a crowdfunding (Indiegogo) campaign to raise money and awareness, find a factory in the U.S. that could mass produce each meal, develop a website and marketing campaign, and I've probably missed a few dozen more steps she went through. Around January, 2014, the Bombacino's dream became reality and the first Real Food Blends started shipping out to eager customers.

Coming next month in powdered form!

Fast forward to today.  Real Food Blends has grown dramatically.  The meals are approved by most insurance and starting to be accepted in hospitals.  A new meal is coming out next month (Turkey!). Julie and Tony are incredibly busy.  Meetings with insurance companies, hospitals, doctors, nutritionists, dietitians, and individual customers have them criss-crossing the country with little time for themselves.  On top of this, they still have to focus on A.J.  He still has seizures, still can't talk or walk.  They still need to bring him to see various specialists both near and far from their home in Indiana.  A.J. is the C.I.O. (Chief Inspiration Officer); they started this whole thing because of him. They pour so much love and support into their tube-fed son, and now they've taken on countless other tubie children and adults who rely on Real Food Blends for their nutrition.

Forget the meals; how do I get a Real Food Blends chef's coat??

The Liebenow's

Brian and Betsy Liebenow have one kid, Grace.  She's eight.  The other day, the couple were sitting on the couch watching T.V. when Grace called down from the kitchen:

"Mommy!" ...no response... "MMMOOOMMMMEEEEEEE!!!!!!!!!"

"Yeah?!?"

"I'M HUNGRY!!!"

"Well, find something to eat!"

"WE DON'T HAVE ANYTHING!!!"

"We've got lots of stuff. Have a granola bar!"

"I DON'T WANT A GRANOLA BAR."

"Keep looking!"

"MOMMY, MY TUMMY HURTS BECAUSE I'M SO HUNGRY!"

"Fine. I'll make you some ravioli. JUST LET US WATCH THIS SHOW!!"

I'd say one of these couples isn't putting the proper amount of effort into parenting.                 


                                                                                  

Early this month, Julie and Tony were in Nashville for the Academy of Nutrition and Dietetics' annual Food & Nutrition Conference & Expo (FNCE).  Nashville isn't too long of a drive from where we live, so Julie asked if they could take Betsy and I out to dinner one night.  We were thinking, YEAH, sounds great!  Free dinner and we can spend a Saturday night in the 'big city' away from the in-laws!  Ok, maybe it was just me thinking that last part, but I told Julie that it would be awesome to meet them and learn a little more about the company.

Then Julie said that since we were in town, maybe we'd like to stop by the Expo for the day on Sunday and spend some time at the Real Food Blends booth.  She also said Real Food Blends was willing to pay for our hotel room for the night.  This overnight stay is sounding better and better! The FNCE is where registered dietitian nutritionists, dietetic technicians as well as many researchers, educators, students, nurses, physicians, pharmacists, clinical and community dietetics professionals, consultants and food service managers from all over the country gather to learn about the latest trends in nutrition.  The Expo happens in a different city every year, and this year it was in a huge room at the Music City Center in Nashville.  The day we were there, over 11,000 people were in attendance.  It's kind of a big deal.

Saturday afternoon, Betsy and I left Grace on a street corner to fend for herself and drove over to Nashville.  We checked into our hotel room, then met Julie and Tony for dinner at Puckett's, a really popular barbecue restaurant a couple blocks from where we were staying.  Thankfully, Julie had reservations because this is one of those places where it is impossible to get a table on a Saturday night without reservations.  Like pretty much every other restaurant we've been to, the wait staff at Puckett's were very accommodating.  When the first table they showed us didn't fit my syringe holder, they let us take another one that was thin enough for me.  I ended up getting the BBQ patter with a mix of pork, chicken and brisket.  The meal included sweet potato fries, baked beans, and coleslaw, but I left off the fries so my blend wouldn't get too thick.  I also got a Peach Ice Tea (like a Long Island Ice Tea, but peachy) because Real Food Blends paid for my meal and if there's one thing I'm good at, it's being a freeloader.

Would've been a good pic, but a weird couple photobombed me

The next morning, Betsy and I walked to Music City Center to check out the Expo.  It was so fascinating to see!!  It's like going grocery shopping, if there were two people standing behind each item in the store explaining why it's such a healthy product.  All the big food companies were there. Betsy and I only walked around a little bit, but some of the booths I saw in no particular order:  Kellogg's, Monsanto, Abbott Nutrition (makers of Ensure), the Sugar Association (ironically, this was at the booth next to Real Food Blends), Dole Fruits, Blendtec (didn't see the Vitamix booth but they were there), Campbell Soup Company, Organic Valley, Chick-fil-A (one of the more popular booths), Dr Pepper Snapple Group, Gluten Intolerance Group of North America, Kikkoman Foods, Nestle, NutriBullet, PepsiCo, StarKist, the Wild Blueberry Association, the Cranberry Marketing Committee, Pfizer, and Sun-Maid.  This is just a fraction of the 380 exhibitors at the Expo and most of them were giving out free samples, so you could graze your way through the conference if you were so inclined. 

The best part of the day, by far, was sitting in the Real Foods Blend booth and watching Julie and Tony changing hearts and minds about eating blended food through feeding tubes. Like I said, there were thousands of health professionals in attendence and many of them (most?) had patients with feeding tubes or they were students preparing themselves to work with tubies.  This was the third year that Real Food Blends had a booth at FNCE, so there wasn't quite as much disbelief from attendents on feeding tubies real food, but there were still those who insisted that blended meals were "too unsanitary" to use in a hospital setting or didn't offer the "total nutrition" that Abbott Nutrition touts with their formula products.

Julie and Tony spreading the gospel of real food

"Who's that hot tubie model at the RFB booth??" -overheard at FNCE 2015

I especially enjoyed sitting in the booth while Betsy pushed a coffee and Salmon, Oats & Squash meal through my tube.

Oh, Betsy is the hot model

I liked being able to tell people that I've been eating Real Food Blends since they started and the meals ABSOLUTELY sit better in my stomach than Ensure ever did.  I think bit by bit, the health community is becoming aware of the benefits of eating real food, rather than corn syrupy formulas.  Hopefully Betsy and I helped Julie and Tony on Sunday, but then we had to get back to our couch and starving child, while the Bombacino's continued making the world a better place.

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.