But how do I cap my 60 mL syringes?

Since the introduction of our Syringe Totes, which let you carry prefilled 60 mL syringes with an ice pack to keep them cool, I get this question a lot:

“But how do I cap my syringes so they don’t leak all over?”

Well, you have several options.

Use an old extension
Shut the clip on an old extension, glue it in place if you like, and snip off the rest of the extension. Slide that puppy onto the end of your syringe and you have an awesome homemade cap. This is an ideal solution for those whose DME doesn’t provide syringes with caps, or for those who’ve bought syringes on their own without caps. (This is shown in the leftmost syringe in the image above.)

Use the caps from feeding sets
The second and third syringes in the image above are capped with the caps from feeding sets – the second syringe has the cap from the legacy feeding sets (red tip) and the third syringe has a cap from the EnFit feeding sets. Legacy caps fit much better on the syringes I own, and the EnFit ones are kind of loose, but they still work. This is a pretty simple solution for those who use both a feeding pump AND 60 mL syringes.

Buy or use syringes that come with caps
This seems obvious, but a shocking number of 60 mL syringes do NOT come with caps.  If you get syringes from your DME, ask them if they have any available with a cap. If you buy syringes on your own, look for ones with a cap. Alternatively, as mentioned below, The Squirrel Store sells caps that fit on the Miracle Syringes they (and others) sell. The two syringes to the right of the image above are two different types of syringes we’ve gotten from two different DMEs that both came with caps.

Wondering where to get syringes? I strongly prefer O Ring syringes over rubber-tip syringes. They have SUCH a long life. We’ve been using the same 5 O ring syringes for 6 years now. Rubber tip syringes tend to last us a few days max before the rubber starts sticking really bad, and then we have to baby them along with olive oil for continued function – not exactly easy to use on the go!

If you weren’t already aware, some people are into squirrel rehabilitation, and those people evidently use 60 mL O ring syringes. So, some of the best places to buy O ring 60 mL syringes are squirrel rehab stores like The Squirrel Store and Chris’s Squirrels and More.  The “Miracle” Syringe sold by these stores does not come with a cap, but The Squirrel Store sells caps that will fit on the tips of the 60 mL syringes.


Packing for the Emergency Room

Oh no! You’re having a medical emergency! What to do? Quick, hit up Pinterest, look for this pin, which you’ve of course saved, read it over fast, and pack up!!

No, I’m kidding. I mean, obviously.

This post is meant to be more of a jumping-off point for your own strategy of pre-packed bag and last-minute grab list. Having a reasonably decent amount of stuff to face a few (or many, many) hours in the ER really does rely on some advance planning. Plan NOW so you don’t have to panic later!

For the emergency room, as with most things, I prefer a multi-pronged approach:
1. Things that are always packed
2. Things that are grabbed at the last minute -OR- packed once it seems that an ER trip is likely, though not imminent
3. The things I just normally have with me in my bag
4. Strategic dressing

Note also that when I say “emergency room” I actually mean “emergency room, with the potential of being admitted.” By this, I mean that I bring enough stuff to last me about a day and a half to two days, which is about the longest I anticipate having to go before someone can bring me more stuff, such as my hospital suitcase.

Things that are always packed.

I use a series of small storage bags for this (the medium wet bags from this page), which are then thrown together into my tote bag that I bring to the emergency room.

  • Feeding supplies for 36-48 hours. We use a combination of Real Food Blends and home blenderized meals in our daily life, and I pack only Real Food Blends in this bag. His feeding pump and charger (I have a spare charger and an old pump that doesn’t hold a charge). Feeding sets and extensions. If you have an oral eating child, pack shelf stable preferred foods.
  • Medication supplies. I can’t pack the actual meds, but I have a small bag with various sizes of syringes and an extension (I don’t use the same extension for meds as I do for food) that I store in the feeding supplies bag.
  • Mom Survival. I keep a small bag with a water bottle and some of my special chocolates, as well as some advil and enough menstrual pads for about 2 days. Because murphy’s law dictates that I’ll start my period a week early if we’re in the ER. Extra socks. Hospitals are gross.

Things That Are Grabbed Last Minute

Your list will vary here, but this should help you get started!

  • Meds. Pre-drawn for 2 days worth if possible, otherwise, I just toss the bottles in a ziplock.
  • DVDs. Our ER has a DVD player. They do have movies you can ask for, but if the ER is busy, getting you a movie is very low on the list, so I bring our own. I store our current favorites in a carry case anyway, because… I just do, I guess. So I just grab the case.
  • Current favorite toys and old favorite stuffed animals.
  • Electronics and cords.
  • My knitting.
  • Weighted blanket. (He has a small one that I use for this – I don’t bring his big one.)

Things I Have With Me

I carry a backpack most places. I leave it in the car nowadays, but I still bring it with me when I leave the house. That’s where these things live, and then the “pack last minute” things also go in here.

  • Collapsible cup. Every mom should carry one. We use ours all the time.
  • Toothbrush, toothpaste, and tiny deodorant. I sweat when I’m anxious and most of our ER trips are urgent and in the middle of the night. I’m better at humaning when I’m not keenly aware of my dragon breath. You may wonder why I don’t just keep these in the “Packed all the time” section? I find myself absentmindedly forgetting things like deodorant sometimes, and I have used that toothbrush actually quite a bit.
  • Crayons and a coloring book.
  • Pens, pencils, and a small notebook.
  • G-Tube Emergency Kit
  • General Emergency Kit (this has bandaids, small scissors, a packet of triple antibiotic cream)
  • The Epi-Pen
  • Playing Cards and Go Fish Cards.
  • Gum (I grind my teeth)
  • Teddy’s Vogmask. Hospitals are gross.
  • Chapstik
  • Snacks for me, snacks for him (he does eat orally a smidge)
  • Hair ties
  • Spare battery, charging cables, and one dual wall charger.

Are you thinking “this woman has an unhealthy obsession with charging cables?” That may be true. I usually have more than I need. If we do ER to transport to admission, for example, I have the cables from my backpack, the ones from my ER bag, and the ones in my suitcase. Whatever. I’d rather have too many than not enough. And, plus, I get to be that mom who has the extra cable. You know. The one who gets to help that dad who was on his weekend with his daughter when she suddenly became ill and a day later, she has a diagnosis of type 1 diabetes and they find themselves hours away from home facing at least several days inpatient and his phone’s on 5% and he didn’t bring a charger to the ER in his hometown yesterday. True story, and not the only time I’ve lent a charger to a fellow hospital parent. Yes, hospitals often have charging stations now, and that’s GREAT. But you really need a charging station in the room with you if you’re alone with your child.

Strategic Dressing

  • I keep a pair of comfy gym-type pants and a comfy, seasonally-appropriate shirt in a special spot in my dresser. I throw these on in an emergency and grab a hoodie from the hook where I keep hoodies. These clothes are actual clothes – I look like I’m dressed. They’re also comfortable for sleeping, so if we’re there overnight, or if I want to snuggle up in the bed with Tbear, or whatever… I’m also comfortable.

Now, what if the emergency is such that there just isn’t time to grab ANY of this? Well, I at least have the things in my “Always have with me” list, because I can’t imagine any emergency that I don’t grab the backpack. And because we can’t go without Teddy’s meds, and our local hospitals don’t have his most important ones readily available, someone will simply HAVE to bring them to me at the hospital. Keeping my ER things in established places (in the closet where I store medical things, or in my dresser) means that anybody can find them.

How do I keep my feed cool overnight?

How will I keep my formula or blended food at a safe temperature overnight? Do I have to get up to refill the bag every few hours? Is this even something I need to worry about?

These are all questions that many feeding tube users on overnight feeds have asked – you’re definitely not alone in wondering!

Let’s start with the last question first. Is this something you need to worry about? If you’re on overnight feeds and you use formula or anything prepackged (so, anything other than home blended food), check with your provider, your pharmacy, or the packaging of the product itself to see what the recommended hang time is. Many formulas can safely be hung overnight without any refrigeration at all. Some can’t. Some users prefer NOT to, even if they technically can. Home blended food absolutely cannot hang overnight without being kept cool. Breastmilk – whether fresh or refrigerated or defrosted – should also be kept cool overnight.

Will you have to get up to refill your bag every few hours? No!! Though many caregivers do just this – they fill the feeding set with enough breastmilk, formula, or food to last for 2-4 hours, and then they just get up when the pump starts alarming NO FOOD to refill it.

Please please stop doing this. For your own sake. This is a miserable way to live if you don’t have to! And you don’t.

So…. how can I keep my feed cool all night?

Use some sort of insulated container and an ice pack that’s big enough to last all night.

I would recommend our Insulated Feeding Pump Bag Covers + an ice pack. They’re absolutely perfect for this use. They are insulated with a layer of thick, high performance fleece – not cheap fabric store fleece, but good, thick stuff from Malden Mills (a brand of fleece known for its high quality and insulation). The inside fabric is flannel, to help absorb condensation and prevent dripping as the ice pack thaws or in humid weather. At your option, we can add a pocket to hold an ice pack, or you can just toss the ice pack inside without a pocket (which is what I do) – either way, we don’t rely on an elastic strap that will stretch out over time, and the pocket is big enough for nearly any ice pack. On really hot days, I stick in one of those giant picnic size ice packs!

I do recommend monitoring the temperature of your feed the first few nights, or if you experience unusually warm weather without air conditioning. And you will absolutely need to use an ice pack – the insulated covers aren’t actually refrigerators.

But you shouldn’t have to wake up during the night to deal with NO FOOD alarms or worry about food spoilage overnight!!

Packing for a Long Hospital Stay

Packing for a hospital stay

So you’ve got an upcoming hospital stay and you’re not sure what to bring? After several dozen hospital stays of varying lengths, most averaging two weeks, during my son’s first three years of life, I’ve got plenty of experience in knowing what is and isn’t useful in a hospital! Even these days, when we’re in a period of relatively few long hospital stays, I keep the suitcase packed and stocked. Partly because, with my son’s medical conditions, you just never know when you’ll suddenly be thrown back into long stays, and partly because most of the things in the suitcase were purchased specifically for the hospital and I truly have no other place to keep them.

My hospital packing is actually two-pronged. I have the suitcase, whose contents rarely vary. And then I also have what I call the “fun bag.” (OK, I only call it that to myself. I don’t think I’ve ever said that out loud.) The “fun bag” is for all the “current” things that we’ll want while we’re at the hospital. My knitting, a book, my notebook, his current favorite toys, our bedtime reading book, technology and chargers, etc. And then he is allowed to pack some number of stuffed animals and toys in his backpack, as well.

Your needs will obviously vary depending on your child’s needs, your individual needs and wishes, your child’s age, and what is available at your hospital.

So here’s what’s in my suitcase, and why.

Inside my Suitcase

For him:

  • Packaged blended food (Real Food Blends), enough to last a week. My husband or someone else can either bring us additional food if we’ll be staying for longer than a week, or they can mail it. Our hospital is reasonably supportive of blended diets (DS gets real food blended up through his feeding tube) but I prefer to bring our home food and let him order from the menu for oral food. I consider asking them to blend up something from their menu as a last resort.
  • Immersion blender. I need to mix the RFB with water to make them thin enough to go through the pump, and I do this with the blender.
  • His feeding pump and feeding sets. At some point, our hospital switched to Kangaroo pumps, and their pumps don’t work well with blended diets. I just bring our own. I also have several extensions in the suitcase, but generally just use hospital provided extensions.
  • Diapers. Teddy’s in a size 7, and our hospital doesn’t stock that size for some bizarre reason. I keep a pack in the suitcase.
  • Clothes. This is a variety of hospital gowns I’ve made him, a set of commercial pajamas, underwear and socks, and a few shirt/sweatpants combos. There’s a hoodie for him, and also a pair of slippers, though he thinks hospital socks are the best things ever. I sewed up a soft fabric basket that holds his clothes in the suitcase to keep them all together and to make them easy to find quickly.
  • Activities. I keep an inflatable ball in the suitcase, as well as some coloring books and markers. (I don’t pack crayons, but that’s because I keep crayons in my every day bag.) A floor cloth – I think this is technically a beach cloth? I found it on clearance at Toys R Us. It folds up small and we use it on the floor so he has a clean place to play.
  • A sippy cup. He’s technically too old for sippy cups, but I find they’re still handy for when he wants to drink but doesn’t feel very well and wants to lay down.
  • Personal care items. I pack special soap and lotion, his toothbrush and toothpaste, and nail clippers.
  • A special pillowcase.
  • Last minute, we put his weighted blanket in the suitcase, as well.

For me:

  • Food. I can’t always leave to get food in the cafeteria, and I don’t always want to order from the parent menu for home delivery. Ordering outside delivery food all the time gets expensive. I started packing shelf stable microwave meals for myself and honestly it’s been awesome. It’s not the BEST food, but when your kid is miserable and you don’t want meal service pizza again, it’s not bad at all. I tend to get noodle dishes, soups, ramen, instant mashed potatoes with canned meat, and those Ready Rice packages also with canned meat. (Not many vegetables here, so when I have the opportunity, I do run down to the cafeteria and stock up on veggies from the salad bar as well as whatever hot veggies they have.)
  • Things to make the food. A two cup Pyrex cup. Some spoons and a knife. A bottle brush, though I think this is leftover from when I used bottles to store pumped breastmilk.
  • Clothes. I keep three sets of clothes in my suitcase, so combined with the one I’m wearing when I arrive, I can go three days between laundry. I pack extra socks because socks get nasty in hospitals. A pair of slippers. Pajamas. My hospital pajamas are yoga pants and a shirt – so they’re not obviously PJs. I feel ridiculous talking to doctors half my age when I’m wearing my jimjams, so I prefer to look like I’m actually wearing clothes regardless of what time it is. A hoodie. A spare belt. I usually wear skirts, but we had a hospital stay once where it was so cold in our room that I mostly wore a pair of jeans I had packed, but I had no belt and spent two weeks pulling up my darn pants. NEVER AGAIN. Like with his clothes, I keep mine in a soft fabric basket inside the suitcase.
  • Personal care items. All the usual things. Deodorant, brush, toothbrush and paste, hair ties. I cover my hair, so I have a few casual covers in there. Some OTC meds like allergy and advil. Travel size shampoo and conditioner. Good lotion. Scissors. (I don’t shave, so I don’t pack a razor, but obviously you’d want that if you do.) Pads, enough for a whole cycle.
  • Miscellaneous things that make me happy. Tea packets. A hot chocolate or cider packet or two. Gum because I grind my teeth when stressed and this somewhat mitigates that. An insulated, lidded mug.
  • Envelopes and stamps. I don’t use these as much any more, but when my other kids were younger, they enjoyed getting mail from me from the hospital.
  • Notebook and pen. I take notes during rounds. Some moms keep a journal.
  • Humidifier. I found a small portable humidifier at Target one year. It holds a water bottle. Hospital air is so very very dry. This is one of my favorite hospital bag things.
  • An internet television device. I call mine my Fauxku because it’s like an off brand Roku. I can hook it up to the hospital TV and get Netflix, so we’re not limited to the movies the hospital provides on the entertainment system, if they have one. Our hospital does NOW but hasn’t always.
  • Spare cords. I have a handful of phone, kindle, and ipad cords, and an extra cord for my laptop. Because I can always remember my laptop but for some reason, I can’t always remember the cord.
  • Two empty tote bags. Because you just never know.

Inside my Suitcase

5 Blenderized Diet Must-Haves

Many feeding tube users and parents of feeding tube users have discovered the numerous benefits of a blenderized real food diet. Thinking of starting a blenderized diet? Already taken the plunge? You’ll want these five must-have items.

      1. A Good Blender. Most people who use a blenderized diet prefer a BlendTec or a Vitamix and find that straining the blends isn’t necessary with these blenders like it can be with other brands. I personally have used a BlendTec for 6 years now and LOVE IT. Follow the instructions for what order in which to add food, make sure there’s enough liquid to get a good vortex, and run it twice on soup. Boom. These blenders are pricey; check with the manufacturers about the availability of refurbished machines.
        a BlendTec blender
      2. Nice syringes. Regular rubber-plunger syringes stop working after a VERY short period of time. Many blenderized diet people prefer syringes with an O-ring instead, such as the Miracle Syringe. Oddly enough, these syringes are often sold by stores that cater to squirrel rehabbers. O-Ring syringes are also sometimes available through DME suppliers, so be sure to ask before you pay out of pocket. Miracle Syringes are Catheter-tip, but you can also get adapter tips to make them into a slip tip if you prefer to feed directly into the button, without using an extension. If you use EnFit, NeoMed makes O-Ring EnFit syringes that you can get through your DME or online medical supply stores.  Why bother with getting an O-Ring syringe? They last forever and glide like an Olympic ice skater. I bought a handful of syringes in 2013. I still use them. They still work like a dream.
        a miracle syringe
      3. Extensions. Some people feed their blenderized diet directly into the buttom using a slip tip syringe. Some people prefer to feed through the more typical Y-Port extension. But many tube feeders prefer one of the two single-port (or bolus port) extensions – the right-angle bolus extension or the straight bolus extension. I personally prefer the right angle bolus extension for pump feeding (no med port to pop open) and the straight bolus extension for syringe feeding (requires less pressure, in my opinion). Get a few of each from your DME and see what you like.
        shows three types of extensions
      4. Storage for your blends. There are many different ways to accomplish a blended diet. Some people prefer to blend by the meal, so they cook breakfast and blend it up, then cook lunch and blend that up, make a snack later, then dinner. If that’s you, you have no storage needs. Others prefer to blend either one time for the whole day, for once for a couple of days, or once for a week or two. If that’s you, you need a good way to store your blends. You have so many options. Our family blends every 2 weeks, and I freeze blends in glass jars (leave plenty of headspace, don’t crowd the jars in the freezer, and don’t screw the lids on until frozen). Other families prefer to use any variety of plastic containers. Some use breastmilk bags. A relatively newer product on the market that is a favorite with many blending families is Squeasy Gear.
        graphic showing squeasy gear benefits.
      5. A way to keep your food safe on the go. Formula is much easier in this regard. It’s shelf-stable. But actual food isn’t – particularly not when blended up. Many feeding tube users find they prefer to carry their feeds already drawn up into syringes for feeding on the go, rather than carry a single syringe and a jar or bottle full of food. Refilling syringes can get messy and usually requires more of an interruption to your day, whereas bringing prefilled syringes reduces the hassle factor quite a bit. If you find you prefer toting prefilled syringes, our Syringe Tote is for you. I’m so excited about this newer addition to my line of feeding tube accessories! It’s double-insulated, has two large compartments inside, and one small compartment, and it’ll hold 5-6 60 mL full syringes plus an ice pack and small accessories like a 20 mL syringe, Gtube cushions, a few predrawn liquid medications, etc.
        Wallypop's syringe tote