Exercising in the hospital

We just passed 1 year since Teddy’s last inpatient stay in September! Whoohoo!

So, fortunately, I haven’t had to exercise in a hospital in over a year. But I’ve certainly had plenty of times when I needed to.

Exercising while you’re in the hospital with your child has so many benefits. It actually does help keep your spirits and your energy up. Sitting around a boring hospital room all day does nothing good for your mental health, especially if you’re there for weeks or months at a time. I also find that doing healthy things for me while we’re inpatient is also a huge mental boost – I am Doing Something Healthy For Me, Yay Me!

Plus, the obvious physical benefits of getting regular movement and exercise. Many people stress eat in the hospital; exercise will help counteract that. (I stress eat veggies in the hospital, which I know is really weird, but I also tend to hit the sugary beverages and carb-loaded snacks a little heavy, as well.) Plus, unless you specifically make an effort to move around during the day, it’s way too easy to spend the entire day just sitting.

But HOW can you exercise in the hospital?

This is NOT SILLY

I would suggest that first you need to get over the idea of looking silly. This is NOT the weirdest thing your child’s providers have ever seen. Also, I’m not suggesting here that you exercise to the point that you are a sweaty, red-faced mess. Feel free if you like. But that’s not what I’m talking about here.

Walking

If you can leave your child’s room, go for a walk. If they can leave with you, plop them in a wheelchair, carrier, or stroller and bring them along. Walk as briskly as you can without being rude to others in the hallway. Your individual hospital policies will vary, and your individual hospital will vary. We’ve had times we’ve only been able to pace up and down a rather short hallway. We’ve also had times we were able to slip away from the unit and walk outside. Walk as much as you can. We usually go for 2-3 walks a day when we’re inpatient if we’re able to leave the room. It kills time, it gives us something else to look at, and it feels good. (Let’s not talk about how many times I use those walks to buy a scotcharoo.)

Stretching and Yoga

If you do yoga, it’s pretty easy to adapt to a hospital room. If you don’t do yoga, you could start! There are YouTube channels with beginner yoga routines – pop one on and give it a try! If you’re not into yoga (I’m not), just a plain ol’ stretching routine can feel really good on a body that’s stressed. Don’t push anything, just gently stretch out your muscles. I try to make it a point to do this at least once a day while inpatient.

Resistance Exercise

I find muscle-building exercises to be easier to do inpatient than aerobic exercise. I try to keep an exercise band in my hospital suitcase for resistance, but even without that, there’s pushups, situps/crunches, leg raises, squats, etc. (I’m typing this post in the outpatient infusion clinic and I’ve just done a set of squats and lunges to wake myself up a little!) I’ve been adding quite a few ideas to my Hospital Life board on Pinterest if you need help getting started.

Keeping it Private

If you want to minimize the chances of being “caught” exercising, consider these strategies.

  • Post a note outside your child’s room to please knock, mom is exercising inside. (This is far less embarrassing than the note I used to put out, which was “please come back later, mom is showering inside with the bathroom door open.” Teddy would freak out if I shut the bathroom door.)
  • Find a private parent room. Most hospitals have family break rooms, but some hospitals have little private rooms just for you. Sometimes these rooms are intended for sleeping, but as long as you’re being quiet, there’s no reason not to use this room for exercising.
  • Hit the gym. Some hospitals have on-site gyms for family use. Our primary hospital has a gym in the next building that parents can use for free. I’ve never taken advantage of this, but I know parents who have and they’ve enjoyed the break from the hospital as much as the exercise itself.

New Diagnoses and Grief

Grief is a normal, natural reaction to getting a new diagnosis. I recently wrote about my own reactions to a new, unexpected diagnosis over at Teddy’s blog.

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Recently, my kiddo’s picked up a fair number of new diagnoses. Three were not surprises, one was. Sort of…

And I’m full on going through the five stages of grief over this.

And it’s ok.

I think, too many times, special needs and/or medical needs parents feel like the process we go through when we get a new diagnosis is weird or unacceptable or weak. But it isn’t.

It’s grief.

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Read the rest of this article over at Teddy Bear’s Journey.

Somebody Asked…What are the benefits of a two piece diapering system?

At Wallypop, we primarily make – and champion – fitted diapers with covers. Somebody recently asked us about the benefits of a two piece diapering system over something like pockets or fitteds.

There are so many.

What is a two-piece diapering system?

Let’s start by defining a two piece system. A two piece diapering system consists of either a fitted diaper plus a cover, or a prefolded diaper plus a cover. The absorbent part and the waterproof part are completely separate.

Customization

Since the absorbent part and the waterproof part are completely separate, you can easily adapt your diapering system to fit your needs. Do you need super absorbency and breathability, and prefer natural fibers? Use an extra absorbent fitted diaper with a wool cover. Need something super trim? Pair a trim fitted with a thin PUL cover. Is your child a super wetter? Nothing beats the overnight pee-a-thon like a fitted plus fleece cover.

Fit

Two piece diapering systems typically are sized – just as Wallypop’s Perfect Size diapers. This allows a superior fit over one-size diapers, and reduces leaking issues.

Cost

Believe it or not, two piece diapering systems are actually usually LESS expensive than pocket diaper systems or all in one systems. First, covers can be worn several times before they need to be washed, so you don’t need to change both pieces every time. Second, they just simply cost less, generally speaking. Woot!

Reuse

As mentioned above, you need to own fewer things overall, because you don’t need to change the cover every time you change the diaper. Make your cloth diapering even greener!

Absorbency

A two piece system can easily be made more absorbent to suit your needs. Pockets and All in Ones can be hard to stuff with enough absorbency, but it’s easy to increase the absorbency of a fitted diapering system – either purchase more absorbent fitteds (we make extra absorbent fitteds especially for those heavy overnight pee-ers), or simply add doublers – the cover will still fit snugly over the diaper without gaping around the legs, as can happen with pockets and all in ones.

Drying Time

Because they are a two-piece system, fitteds with covers tend to dry faster than all in one diapers.

Natural Fibers

Fitted diapers are made with all natural fibers, and if you prefer to use 100% natural fibers, you can use wool covers.

Easier to Wash with Less Stink

Two piece diapering systems tend to be easier to wash and experience less stink as a result. All natural fiber fitteds don’t require any special treatment in the laundry, and most covers can simply be washed and set out to dry. (Wool covers DO require special treatment!)

There you have it! If you’ve never tried a two-piece diapering system, we’d encourage you to give it a try. Wallypop fitteds and covers are an affordable way to diaper your baby!

Simplify Your Life as a Special Needs or Medical Parent

Life as a parent to a medical or special needs kiddo can sometimes feel overwhelming! You’ve got regular parenting things to do. Regular adulting things to do. And then you’ve got a whole additional career as a nurse/doctor/therapist/care provider for your kiddo. And, of course, the ever-present need to do some self care, which everyone agrees is important but nobody seems to want to actually help make happen. Right?

The fact of the matter is that we’re all humans. Humans have a limited supply of time and energy. A disproportionate amount of our time and energy as parents to medically complex or special needs kiddos goes to our medically complex or special needs kiddo, leaving a smaller-than-most-people’s amount left for all the other things, particularly the regular adulting type things.

So the first step to simplifying your life is…

Recognize that you have to be purposeful about how to spend your time and energy.

I remember back before I had a medically complex child. I could just willy nilly decide to completely rearrange our closets. Or whatever. But these days, I just don’t have that same amount of energy, because I spend a large chunk of energy on keeping another human alive, and being interrupted constantly by the various urgent needs of the human I’m trying to keep alive. (I am trying to keep ALL my kids alive, obviously, it’s just that one of them needs a bit more parental involvement!) I have to be purposeful about how I spend my time and energy, if I want to be sure to have enough for the important things – not just the keeping-the-child-alive things, but the being-a-fun-mom things and the being-present-for-the-other-kids things.

Separate the Necessary from the Feels Necessary.

Think through the things you do or think about regularly. Which ones are REALLY necessary? Which just feel necessary? Only you know which task goes in which pile, but it’s too easy fall into the trap of categorizing not really necessary things as “necessary” because they FEEL necessary. Doing my kiddo’s meds is necessary. Vacuuming the rug is not (usually) necessary.

One way to help you sort your “things” is to ask yourself “what are the consequences if this doesn’t get done?” If I don’t pay my bills, I have to pay late fees, or I have my water and electricity shut off. Paying bills is necessary. If I don’t dust the mantle, I have dust on the mantle. Not necessary. If I don’t cook dinner for one night, our family will survive. People will find something to eat. If I never cook again, our family will have poor nutrition and perhaps start losing weight. Cooking is not necessary, but ensuring everyone eats healthy food IS necessary. If I don’t mop the floor, I have a dirty floor. Mopping the floor is not necessary. (But when my son was immediately post transplant on high doses of immune suppression and rolling around on the floor licking things, vacuuming the rug and mopping the floor was a lot more necessary.)

I want to note, there’s a category of “not necessary” things that are things that bring you joy. I have a friend who loves baking bread from scratch. It isn’t necessary, but she enjoys it. These “not necessary” things should, in moderation, be considered to be just below the “necessary” things in importance. They’re important to your mental health.

Do the necessary things first. Do the not necessary but I love them things next. Do the not necessary things if you have leftover time and energy.

Eliminate, Streamline, and Delegate

Thinking still about all your “things,” what can you eliminate entirely? What can you streamline? What can you delegate?

Are there things on that “not necessary” list that can be eliminated? Your spouse’s workplace’s annual picnic that always stresses you out, for example? This year, just don’t go. Make up an excuse if you need to. Making the bed? Not necessary. Eliminate it, unless having a neatly made bed brings you enough joy to be worth the time and energy investment.

What can you streamline? Laundry? If your family has enough clothes to make it a week, consider only doing laundry every week. At our house, we wash laundry one day a week – my ten year old actually does this. It’s several loads, but it’s not so much that it can’t get done in one day. Then the next day, I fold it all. It takes an hour or two, but I set aside the time, put on a movie, and get it done. This is a much more efficient use of time and energy, compared to carrying laundry down and up the stairs daily, having to fold daily, having to walk to all the bedrooms daily, etc. (And, to be really honest, folding could be eliminated, as well. Plenty of families just dig clean laundry out of a laundry basket without any long term damage!)

Paying bills can usually be streamlined. First, as every bill comes in, we check the due date, and then put the bill into a folder marked BILLS that lives in the kitchen. We’ve shuffled due dates around over the years so I only have to sit down to pay bills once a month, unless the odd, unexpected, due-before-the-next-time-you’ll-pay-bills bill pops in. I have Pay Bills as a recurring event on my to do list, it pops in every month, and this is literally the ONLY time I think about bills. I only have to log in to the bank website once a month. I only have to sit down with that folder once a month. I only have to THINK about bills once a month. In reality, if you aren’t as much of a control freak as I am, you could streamline this further by just having all your bills – or as many as possible – auto-pay.

Really, any task that is regular and ongoing can usually be done a bit more efficiently by doing it in larger chunks – but you need to decide for yourself which way is easier – not just physically, but mentally. We don’t have a dishwasher, so we hand wash dishes. This would be more efficient if we let them build up for a few days… but seeing dirty dishes stacked in the kitchen makes me feel gloomy, so we wash dishes daily.

And finally, what can you delegate? I’ve had a handful of things over the years that I’ve just had to sit my husband down and say, “ok, look. I can’t do this thing any more. I need you to do it.” Washing dishes, for example. It used to be my job and then my daily task list with our medical kid just got too long, and now it’s his job.

I also highly recommend having older kids, lol. As my other kids have gotten older, they’ve taken over a LOT of my tasks for me, for which they are paid an allowance. It’s definitely convenient!

Make your Necessary items Easier

This requires some out of the box thinking sometimes. I have to get my oil changed, but I don’t have to be present for that to happen. I can use a facility that comes to me, or I can use a facility that will come get my car.

I have to feed my family, but I don’t have to cook every meal from scratch. I can do take-out, I can do meal kits, I can buy pre-cut vegetables, I can buy healthy meals that are half prepared from the grocery store. My community also has several options for services that allow you to purchase full, made from scratch meals.

Keep a To Do List

Make a list of all those “feels necessary” things that you were unable to eliminate or delegate. See, we’re not going to just not do them. Obviously, you can’t go forever without mopping. We’re just not going to worry about them quite as often, and we’re not going to waste energy thinking about them. Write them down. Make a list. Post the list somewhere. Every day (or week, whatever works for you), take 15 minutes and work your way through the list. Set a timer. When the timer dings, you’re done. Next day (or week), start where you left off. See – those things will get done. But they don’t need to take up your mental energy any more.

Say No

It’s OK to say no. Even to your own kids. Sometimes kid activities fall into “feels necessary” but they aren’t really necessary. You don’t have to let your kids sign up for tons of activities. One activity per child is plenty, unless one of them drives and can drive the others. If you’re the only driver, you have to take an honest look at yourself and your schedule and decide if you have the stamina.

What about extra family commitments? Aunt Bertha’s going to be in town and the whole family wants to plan a weekend full of activities!! It’s OK to say no. Or to say yes, but only for an hour.

What about literally everything else? Say no. Next time you’re asked if you’d like to serve on x group, or commit to joining y activity on an ongoing basis, just say no, unless you’ve really thoughtfully considered it and decided you do have the time and energy. It’s OK to say no.

Take A Break

If you’re feeling really snowed under, it’s OK to take a break from things, instead of fully saying no. Tell your book club you won’t be there for a few months, but you’ll be back in October. Tell your child’s therapists that you need a break for a month or two. Reschedule flexible appointments like eye exams. Sometimes taking a month (or more) long break from the daily grind is just what you need!

Get Organized

I feel like this piece of advice is almost worthless. Those of you who are naturally organized are already organized and those of you who aren’t, aren’t likely to become so. There are countless books, blogs, etc., about getting organized if you’re interested. Having a good system set up for records, for appointments, for medical supplies, etc., saves you time in the long run, and also helps you avoid mental clutter. If you always keep necessary paperwork in the same spot, you don’t have to waste mental energy stressing about where you put whatever piece of necessary paperwork you suddenly need.

Essentials Only During Crisis

During a crisis, pare down to only the essentials. Put off everything that isn’t vital. Afraid you’ll forget something entirely if you don’t handle it right then? Get yourself a file folder. Put everything in it, and write yourself a list on the outside. If it’s something with a deadline, write that in your calendar. Then you can stop thinking about it.

Take Advantage of Slow Times

BY RESTING FIRST! This is something I almost never do, but that doesn’t make it bad advice. When you have a slow period – things with your kiddo are going smooth, no new crises, etc. – REST FIRST.

When you’re all rested up, that’s when you can play catch-up on all the things you neglected during a crisis. Go find that folder where you stashed all the things, and start dealing with them!

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I hope these tips will help you find some peace by simplifying your life a little. Take what you can use, leave the rest.

Blended Diet Hacks

Have you decided to blend up real food for your feeding tube, or for the tubie in your life, instead of using commercial formulas? This is usually a harder path to take, without a lot of support from medical personnel. Here are some tips your nutritionist or doctor probably didn’t tell you – and probably doesn’t know.

1. Modify the Bag

If you run your blended food through a feeding pump, first, choose an Infinity pump. Infinity works SO MUCH better for blended diets than Kangaroo. Second, if you’re experiencing a lot of alarms and troubles getting the feed through the pump, modify the bag by snipping off the flow limiter.

Look at the cartridge part of your feeding set (the hard plastic part with the blue). One of the blue tubes has a picture of a drop of water on it. Pull that off. Underneath, you’ll see what’s in the picture. See the part I circled? It’s like a little knob? Cut, snip, or break that part off. (I prefer to just bend it back and forth until it breaks off.) Reassemble the cartridge. Voila.

2. Cap your syringes

We wrote a whole blog post about this! Many 60 mL syringes don’t come with caps, which is a shame. But you can use old extensions (clamp them shut near the part that connects to the syringe, cut off the extra) or even the caps from your feeding sets, if you also use a pump.

3. Insulated Tote To Safely Carry Filled Syringes

Wallypop's syringe tote

Formula is much easier to carry around. 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.

4. Know your extension

shows three types of extensions

Some people feed their blenderized diet directly into the button 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.

5. O Ring syringes

a miracle syringe

Regular rubber-plunger syringes stop working after a VERY short period of time. Many blenderized diet users prefer syringes with an O-ring instead, such as the Miracle Syringe. 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.

6. Oil Syringes

If O Ring Syringes aren’t an option for you, you might notice that the rubber plunger syringes provided by your DME start to stick after a very brief period of time. Putting some oil (olive, coconut, any food oil) on the plunger will help keep it sliding smoothly – some people prefer to dip the entire plunger in oil, while others prefer to just slide a few drops down the inside of the syringe.

7. Don’t open RFB all the way

If you use Real Food Blends, don’t open the packet completely! If you’re filling syringes, just open a corner of the packet, and stick the syringe in. If you’re filling a feeding set (bag), just open a corner of the packet and you’ll have more control over where that food goes – and it’ll be easier to squeeze out every last bit.

8. Get a longer hang time with an insulated bag cover.

So many nutritionists and doctors shoot down the idea of a blended diet solely on the basis that the food can’t hang at room temperature for long. And they’re right – it can’t. But it’s like they’ve never heard of insulation and ice packs. Insulated covers plus an ice pack for your feeding sets allow you to have a longer safe hang time – even all night without having to refill. They also will let you carry a feed all day at a safe temperature without having to refill. These really make tubie life just so much easier.

9. Fill pouches with syringes, Fill Syringes with Pouches


Some blended diet users like using baby food packets (either single use or resuable) to carry their blends. Yes, some makers of empty baby food packets sell fancy, expensive equipment to fill the bags, but you don’t need that. You, you lucky tube feeder, have access to syringes! Use your 60 mL syringes to fill the pouches. And then when it’s time to feed, if you push with a syringe, do the reverse – stick the tip of the syringe in the pouch’s opening and pull back on the plunger while gently squeezing the pouch from the bottom up. Easy, and no mess!

10. You do You: junk food, batch/meal, healthy, regular diet

There are so many ways to tube feed, and so many ways to approach a blended diet. You do what works best for YOU. Don’t worry about what Suzie on Facebook does. If you/your tubie doesn’t have any special dietary needs, and if they’d be eating a typical diet if they didn’t have a tube, there’s no reason you HAVE to do anything special just because they DO have a tube. Even with most dietary restrictions, most oral eaters don’t create spreadsheets to manage their daily intake.

If you want to feed chocolate cake through the feeding tube (and there aren’t any legitimate medical reasons not to), go for it. Regular people eat junk food occasionally, and tubies are just regular people who eat via a different route. Does it make more sense to you to bland up a whole day’s worth of food at once? Or a whole week’s? A whole month’s? Do it (use safe storage methods). Does it make more sense to you to blend per meal, just blending up what you’re cooking for everyone else, or what you’d typically cook for yourself? Do it.

Do you want to have your blended diet be super healthy? Go for it. Do you want to serve just a regular, every day, American diet? Go for that. Do you want to make a huge spreadsheet to track every calorie and every micronutrient? Do it! Do you want to never ever do that? Unless there’s a medical reason you need to, don’t!

*obviously, a certain portion of tube fed people DO have dietary restrictions, ranging from issues with food allergies to needing a renal diet, to being unable to digest most foods. Please use your common sense here.

11. Squeasy Gear

I don’t personally use Squeasy Gear, so I can’t provide any sort of personal recommendation, but many blending families swear by it for easy storage and portability of blended feeds.
graphic showing squeasy gear benefits.

12. Sharpie scrubs off glass

If you store your blends in glass jars, use a sharpie to label them. So many people try to use crayon, or stick on labels, or dry erase marker. Just use a sharpie. It won’t rub off… but when you wash the jar, your kitchen dish scrubby will take it right off.