Henry's Homemade Formula

Our journey towards adding "real" foods into Henry's Homemade Blended G-Tube Formula

Back to the hospital… again :(

We were back at the ER on Monday as Henry was having difficulty breathing.  As before, he had a cold and the breathing difficulties were related to this.  Unlike last time… he was only a little sick beforehand – a bit of a runny nose – and no vomiting.

The weekend before we could see he was getting a bit sick, but he didn’t seem too bad and still had lots of energy.  Sunday night we could see him deteriorate.  We had family from out of town over for dinner (nice seeing you Julie & Selina!), and by the end of dinner Henry was on the couch completely exhausted.  He went to bed early and fell asleep almost immediately.

It was a rough night and we was crying out and fussy for hours.  Monday morning we could see right away it was harder for him to breath.  And the joy of Henry being almost 3 is… now he can also tell us how he’s feeling.

“harder breathing”… “harder breathing”…

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We gave home some of the Ventalin we were given last time, using the “teddy bear” mask (aptly named due to the pictures on the chamber) and this helped him immediately.  But the effects wore off quickly so we decided to pack up and head in.   We’re still  new to using Ventalin and weren’t sure how much to use at home and how often.  Plus, it only worked for a short time so we figured he needed closer monitoring.

The nice thing about having a kid with difficulty breathing… you get to see someone in the ER pretty quickly!  Some poor families were waiting for hours.  Anyways, his oxygen saturation levers were still ok, so he didn’t need any supplemental oxygen… just some more medication.  We started the moderate asthma protocol… Ventalin, Atrovent and DEX.  While Henry hasn’t officially been diagnosed with asthma, when he has trouble breathing with a cold, this is what they prescribe.

Anytime there is a “crackling” sound in his lungs, they also want a chest Xray.  This is because sound could be due to asthma related symptoms, but it could also be from aspiration (breathing food or liquid into the lungs).  Since Henry was throwing up by this time, they are also concerned about liquid in his lungs.  Thankfully… his chest Xray was clear… just like every other time.

7 or so hours later and Henry’s breathing was back under control.  He still couldn’t keep any food or liquid down… but we’re experienced enough with that so they let us go home.  We did a slow rate of Pedialyte over night (60ml/hr) and by morning he kept a bit of watered-down breakfast down without throwing up.

We continued with the Ventalin and DEX for 2 days and were back to see Dr Hadad this afternoon.  His lungs sound clear and he well on the path to recovery.  He seems to have gotten back his energy quickly this time and is already back eating his normal amounts.  Yippee!

What I want to know is…

Why has he been sick on and off for the past 2 months with no breathing problems… and this time it was worse?

According to Dr. Hadad… too bad!  You’ll never know!!!  Some viruses just go deeper into the lungs that others.  Some stay in the upper airways and sinuses, while other go deeper into the lung passages.  There’s no telling if Henry will have trouble breathing with a cold… it’s just a matter of seeing what happens.

Oh well… such is life :).

The important part is… he’s feeling better and back to being the chatty little almost 3 year old we all know and love.

Cheers, ShelleyAllen_pics (9)

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Henry’s 4th custom seat

Henry's custom seat

The wonderful folks in the Seating and Positioning Department at Sunny Hill Children’s Centre have done it again!  We phoned Sherylin in November as Henry’s last seat was looking a bit small.  Little did we know that he’s completely outgrown it and would need a completely new one.

Since they were building a new one anyways… we decided to make some requests and, as usual, they came through with flying colours :).

Henry’s last seat was built to be used with tilt base and wooden tray.  It is actually a floor level seat, but we used to put in on one of our kitchen chairs.  It had adjustable attachment straps, so this worked ok.  But as Henry grew… the fit got worse and worse.  In the end, in order to get him high enough to the be at the table, his knees were hitting the underside of the table.

So this time, they built the seat to fit right onto our kitchen chairs!  We actually brought in one of our chairs, and the height of our table, and they custom fit it!

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As you can see, the foot rest is attached to the chair legs, and it can be moved down as Henry grows taller.  There is padding under and behind the seat that can also be removed or replaced as he grows.  This also allows us to securely fasten it to the chair and play around with the angle a bit.

 

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It is all completely removable and nothing is actually drilled into the chair.  Everything can be removed and the chair used without it.  As before, everything is water resistant, washable, and can be easily wiped clean.  All in all… it’s almost toddler-proof!

As if it wasn’t amazing enough already… all this was done in one week!  We went in on a Thursday for our initial appointment… Sherylin took one look at the chair and laughingly said there was no way it would keep working… and we started talking about the new one.  They took measurements and started building.  Some components could be used again: the head rest and lateral supports (the “arms” that open and close on the sides) as these still fit him.

We went back one week later – kitchen chair in hand – and they fit the seat to the chair.  It was a longer appointment as they needed some time to get the fit right on the chair… but we left with the new seat that same day.

The only downsides are that, because the seat is larger, we can no longer use it in the stroller like we used to.  But we weren’t using it like that too much anyways, so it’s not a big issue.  Also, since it’s larger it’s a bit bulkier to bring to other places to use.  We used to bring Henry’s last seat to Granny’s house for dinner… but now we just have a little booster seat instead.

Thanks again Sherylin and the techs in the Seating and Positioning Department at Sunny Hill!!!

Cheers, Shelley

 

 

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Nutriport Skin Level Balloon Gastronomy Tube

Nutriport

In to the hospital with the Mic-key… out with the Nutriport!

 

We met with Christine today, the g-tube nurse at BC Children’s Hospital.  As we have been having some challenges with Henry’s tube falling out, I phoned her to see if she could offer any advice.   After measuring Henry’s tube to ensure it was still the right size (as he grows, the button will need to grow with him), we chatted briefly about what other things might be an issue…

  • Size:
    • if the balloon is too big it might be sticking out of the hole (stoma) too far and be rubbing
    • if the balloon is too small, then it might be rubbing on the inside and cause the rubber of the balloon to wear down
      • Henry’s button is still the correct size… 14 Fr, 1.5 cm.

 

  • Medication: this is the always the first thing people ask about.  Some medications can degrade the rubber on the balloon.  Not an issue with Henry as he gets no regular medications through his tube

 

  • Oils: Some foods, specifically some cooking oils can apparently be hard on the balloon.  This one may be an issue that I’ll need to look into more.

 

  • Stomach ph: a very acidic stomach can be hard on the button.  Someone may have a high stomach ph due to foods, medications, feeding schedule, or due to some medical conditions.  I don’t think this is too much of an issue with Henry, as the foods that he eats are typically quite bland.  We don’t add any spices, etc… it’s the foods in their natural form.  And as Henry still throws up sometimes, I don’t experiment too much with different foods.

 

In the end we decided to try out another brand of g-tube, to see if this might work better.  There are several brands of g-tube available, and I’d done some research beforehand so I could be as prepared as possible.  We decided to try the Nutriport brand for several very practical reasons:

  • We can try the Nutriport with no need for surgery or any other doctor involvement.  It is inserted the same as the g-tube and we can do it at home.  If we decide we want to go back to the mic-key, it’s no problem and we can do it ourselves.

 

  • The balloon shape is slightly different: the top of the balloon looks slightly “flatter”… more of a barrel shape (the mic-key is more beach ball shaped).  This flatter top apparently helps it stay in better for some kids.

 

  • We didn’t want to try to BARD yet as it has to be inserted surgically.  Henry’s button isn’t falling out that much that we want to go this route yet.

 

  • Unfortunately the AMT isn’t available in Canada – there are no Canadian suppliers.  So if we wanted to try it we would have to go to the States and we wouldn’t have any local support.

 

  • and the final reason… Christine had one Nutriport in stock, so we could try it out right away and see how we like it!

 

So that’s what we’re doing.  Henry has a Nutriport in right now and we’re going to try it for the weekend.  If it’s ok, then we’ll leave it in for the 3 months and see how we like it.  At Henry’s next routine change, we can either continue with the Nutriport or return to the mic-key.   It’s only been a few hours, so it’s still new and already there are some pros and cons.  I’ll keep recording how we like it and do another post in a few days.

Cheers, Shelley

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Comparing feeding tube brands….

Since we have been having challenges with Henry’s mic-key button falling out, I have been doing some research into what other options are available.  As with most things, there are several different varieties, each with their own pro’s and con’s.  And while one family loves a specific brand… another family hated it.  While there are many varieties of feeding tubes available, I am only focusing on low profile “button” styles g-tubes.

Here is a summary of what I’ve learned so far…

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Mic Key (This is what we currently have)

A “button” style feeding tube and uses a small oval shaped, air-filled balloon to keep it in place.  It is surgically placed initially, and then changed at home (recommended every 3 months).

Pro’s

  • can be changed at home by family.
  • includes two types of extensions: a thinner, right angle tube and a wider “bolus” tube that can be used for thicker foods.

Cons

  • Henry’s button has popped several times; and been pulled out once with the balloon still inflated.
  • the extension tubes get stiff and discoloured quickly, making them harder to use.
  • some people get very bad granulation tissue with this brand.  Henry had this at first, but it resolved on its own after the first change.  He still has some granulation tissue inside the hole that results in some “leakage”, but other than that it’s not a problem.

Nutriport

 NUTRIPORT

Very similar to the mic-key, but with a slightly lower profile.  The extension tubes are thicker which can be nice with a blenderized formula.  The balloon has a slightly different shape that may make it harder to fall out.

pros

  • can be put it at home by the family.
  • interchangeable with the mic-key, so can be tested out and it’s ok to switch back
  • the right angle tube is longer than the mic-key, which some families find helpful
  • slightly lower profile

cons

  • apparently harder to put in the tubes as the connectors are different

BARD

BARD

A lower profile button that some families really like.  It is surgically inserted, and stays in for one year or longer.  It must be surgically changed, or done with conscious sedation.  With an older child or adult, it may be changed while the person is awake, but it takes quite a while to change it and the person must stay still while it is done.

Pro’s

  • is apparently less likely to fall out then the Mic Key button
  • sits lower to the skin, so less noticeable and less likely to get caught on clothing or other items
  • apparently only needs to be changed yearly

Cons

  • typically needs to be changed surgically under general anesthetic

AMT

AMT (Applied Medical Technology)

Pro’s

  • lower profile than the Mic Key brand
  • offered in two styles: balloon and non-balloon
  • less pain when being put in

Cons

  • not available in Canada!!!

 

As you see… they all look essentially the same!  Oh… the joy of being parents.  If only there was a one “best” option, but of course there isn’t.  It’s just a matter of learning what you can… trying what you can… and taking a risk.  We’ll see how this one turns out :).

All information included is purely based on our own experiences and from reading other blogs and company websites.  Hope it’s helpful!  If you know of another brand of g-tube, or have some experience with any of these ones… I’d love to hear about it.

Cheers, Shelley

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We live in a house of vomit

‘Tis the cold season and we are happily (or less than happily) sharing it amongst ourselves.  Between Shawn, Henry, Owen and I, at least one of us has been sick for the past 3 months!  It seems to come in waves – Shawn & Henry together, then Owen and I.  I don’t think there has been a week the thermometer and Tylenol hasn’t been on our kitchen counter.

Henry has puked more in the past month than he has all year.  We checked his foods; made new batches; ensured there were no unusual or untested foods in it… but the vomit continues.

Is it just us…?

Are other families going through this too…?

At first we thought it was just because we were all extra tired after Owen was born… but perhaps it is more than that.  Perpetually weakened immune systems?  Suffering through sheer, unending exhaustion…?   Just a fact of life…?

We’ve avoided playgroups; kept our germs to ourselves as much as possible; and stayed away from as many kids groups as we can.  And yet… we keep getting sick.  Is this really going to continue all winter???

On the up side (yes… still trying to find an “up” side!)… Henry hasn’t had breathing problems once!  All these colds and he’s been just fine.  More vomit than I care to remember, but not a single episode of difficulty breathing.  When we saw Dr Seear, Henry’s respirologist, in November, he was sure we would be back this winter.  But no… not so far.

So yes… I guess there is an upside.  I’ll remember that tonight when Owen pukes on me!

Cheers, Shelley

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AGAIN! Seriously… his tube fell out again!

I recall last time I said it was getting ridiculous… but this is even worse.  Yesterday morning Henry’s tube came out – with the balloon still inflated!  Yikes!  (and that’s a serious understatement!).

How it happened we’re not exactly sure.  Shawn was holding him and Henry was upset about something (he’s almost 3… that happens a lot), and then next thing Shawn knew, his button was on the ground.  When I think about how much it must have hurt him to have it ripped out of his body – it brings tears to my eyes.  His stoma – that’s the medical term for the hole in his tummy – is not meant to stretch, and certainly not meant to expand to have the balloon taken out still inflated.  His tummy is always a little red and sore about the hole… it’s constantly irritated just from everyday life.  Now it’s even more red and there was what looked like small amounts of blood near the top.  Not concerning enough to rush to the doctor… but enough to know it must have hurt.

Looking back, I think his button has fallen out 5 times now since he first got it 2 years ago.  Logically speaking, I suppose that doesn’t sound like very much.  But as mom… it seems like a lot!  We already have an appointment with our pediatrician on Tuesday and this is definitely on my list of things to ask about!

For those who need a refresher on what a g-tube is, click here.

Here are some photos of what Henry’s “button” looks like:

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The first one is a photo of the button with the balloon inflated.  Henry’s balloon is inflated with 5 mls of water (the amount depends on the person), which is supposed to keep it inside his tummy.  Previously anytime his button has fallen out, the balloon has popped and that’s why it’s fallen out.  The white part is outside his body, and it is here that his feeding tube attached to.

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Here’s a photo of Henry (being very wiggly) showing where his tube is located.

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And here is one showing the “hole” when the tube is taken out.  For this photo is was out on purpose, as we were changing it.

Cheers, Shelley

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Goodby Andrea… we will miss you!

It’s a sad day around here… we have to say goodby to our beloved physiotherapist, Andrea.  Actually… we’ve known about this for about a month, but as we are about to meet our new PT next week, it’s got me thinking about this again.

Andrea hasn’t moved, or changed jobs… she’s been transferred to a different region.  All fine and dandy for the company… I get that they have to reassign practitioners from time to time as case loads vary.  However for us.. we’re devastated.  OK… perhaps that is being a bit melodramatic.  But honestly, Shawn & I were both floored when she casually mentioned this at our last appointment.  Leaving… what???

We love Andrea.  And that is NOT being melodramatic!  She has been with us since Henry was 6 months old and has had a wonderful… magnificent… monumental… indescribable… impact in our lives.  Perhaps its because we have seen such amazing strides in Henry’s development; perhaps it’s because he loves it so much when she comes to “play”; perhaps it’s just everything.  But whatever it is… we are sure going to miss her!

All this has also got me thinking, once again, about how lucky we are.  The people who surround us and support us with Henry’s development have each left their own unique mark on our lives.  And even though we don’t see them as often, they’re impact is huge just the same.  Our practitioners from the Centre for Ability – Andrea (soon to be Fiona), Hannah (formerly Shannon before she went on maternity leave) and Amina; along with Krista, our Infant Development Coordinator – know more about Henry and our family than many of our friends and family do.  They know how hard Henry has worked for each milestone he reaches… they know that what seems “typical” was actually the result of months of “play” (aka exercises)… they see that for Henry, all this is just the way life is – he doesn’t know any different.   When we look back, we see how lucky we truly are for everything we have received.

So… from Shawn, Henry and I… thank you!

 

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Games we play with food

I have been working on this post for months and never managed to get it as “finished” as I hoped.  Such is life with 2 kids… here is what I have so far (with a few less photos than I originally intended)…

I remember reading very early on how important positive interactions with food are for a young child.  How we approach and interact with food as an infant and toddler can have lasting effects through adulthood.  As we started experimenting with solid foods with Henry, and quickly learned that this might not go as planned… we started looking for other ways to integrate foods into our lives.

With this in mind… we play!

We aim to get dirt… messy… slimy… covered in food!

Since Henry can’t interact with foods as many toddlers do – by eating them with his mouth – we interact with foods in other ways.  I’m sure many parents would cringe to hear that we purposely “waste” food… but I don’t see it as a waste.  I see it as a crucial step in the process of my child being and staying comfortable with foods and learning how to eat with his mouth.

I’m the one who cringes when I hear other parents saying things like…

  • “don’t play with your food”
  • “stop playing with your food and eat it”
  • “don’t touch that unless you’re going to eat”

And if Henry has heard too, then I whisper in his ear that other families have different rules about food that we do.  At our house, playing with and touching our food is a wonderful thing! You are more than welcome to touch it and then decide not eat it.

So… to this end, we try to play food related activities on a regular basis.  Some are old faves and other may be new.  I’ve included a list of the ones I can think of, and will add more as they come up.  If you have an suggestion for a food-related activity, I’d love to hear about it!

 

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Bean Box

This one came from Beth, the facilitator at our local Strong Start centre.  She always amazes me with inventive ideas, and I loved this one.  Instead of an indoor sandbox, she used assorted beans one day.  Easier clean up… fun noises… lots of colours and textures… great for fine motor skills… easily reused… what could be better! And Henry still likes playing with it a year later.  I keep ours in a clear plastic container – an “under the bed” style – and it is stored under a chair in our family food.  I’ve got a metal bowl, spoons, small plastic cups, mini whisks, assorted measuring spoons, some wooden salad tongs and anything else that looks fun.  For beans, I shopped the bulk department and got kidney, black, and soya beans, plus some lentils and chickpeas.  Basically… I chose based on price, colour, and size.

It’s super easy to clean up afterwards with a broom or small vacuum and most of the beans from the floor can be put back into the bin (unless they got wet or there was a lot of cat hair on the floor that day!).  Most importantly, Henry quickly learned all the food names so when we put them into his blended food… he recognizes them, is excited to add them in, and requested them by name.

Food Pictures

While perhaps not a “game” per se, Henry loves our food pictures and still interacts with them and uses them to request things to eat or drink.  Our OT, Amina, suggested this one quite some time ago when Henry wasn’t talking yet.  I cut & pasted images from the internet, sorting them into different food groups.  My goal was to use foods that we commonly have in our home and ones that he will see at dinner, or may be put into his blended food.  I ended up with 3 pages of images, and he quickly learned all of them.  He still gets a kick out of the fact there are “peas” and “chick peas” and “egg” and “eggplant”… and that they all look very different!  The most commonly requested item is, of course, chocolate milk!

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Play Food

Henry has a whole range of play food, both a soft-cloth style from when he was younger (from IKEA) and the more typical hard-plastic type.  To this I’ve also added some empty containers, like cream cheese, yogurt, etc.  He’s often loading up his shopping bag and requesting more foods from our pantry cupboards, so he can carry them around the house.  He’s not quite old enough to be into “pretend play” yet… so we’re not at the stage for pretend cooking and such, but I can see it just beginning.  I’m looking for a small play kitchen for his playroom… if anyone knows of a good one, I’d love to hear it!

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Play Kitchen

This is new for Christmas this year (thanks Grandma!).  Certainly not a new idea… I knew I wanted to get Henry a play kitchen as soon as he was old enough to enjoy it.  So once he started playing with the set at playgroup, I started looking for one for our home.  We decided upon the Ikea kitchen because of it’s compact design, small size, realistic look and great accessories.  It was a bit pricey, but I decided to go with this instead of a second hand model so that I could be sure it would for Henry.  And I love the built in microwave, baking supplies and pots and pans.  Grandma also got some extra play food to go with it… so we can eat to our hearts content!

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Food stamping

I remember doing stamping as a kid, but hadn’t tried it with Henry until we went to the Burnaby Rhodo festival earlier this year.  One of the activities was stamping with food and leaves, and the images are really cool. It took Henry a bit to get the hang of it, but I think he enjoyed it.  A few weeks later we did stamping at playgroup… not with food mind you, but he was really into it.  I think this is an activity that he’ll enjoy more when he’s a bit older (and stamp supplies are now on our Christmas wish lists!).

Veggy Gardening

I’d have a garden regardless of whether Henry had eating challenges or not… but I love seeing how much he loves being out in the dirt and “helping” with the fruits and veggies.  I think gardening – whether it be growing a tomato plant or some herbs in a few pots on a balcony – or something larger, it a wonderful way to introduce kids to where food comes from and how it is grown.  As soon as we moved into our new place last year I systematically began digging up the grass… and Henry was right beside me the whole time with his little shovel and bucket!  Now he can name just about all the plants, even before the actual veggies have started to form.  He knows what they will become and recognizes them in the store and in our fridge.  He loves helping to pick the veggies for our dinner salad each evening, and then washing them in the sink.   This year we have a whole range of things in our little garden patches: lettuces, swish chard, beets, green onions, spinach, carrots, peas, beans, broccolli, chauliflower, blackberries, blueberries, strawberries, raspberries, plumes, apples, about 10 different herbs, zuccinni, tomotoes.

Some are thriving, others are suffering with all the rain.  We talk about what it takes for plants to grow big and healthy… which segways beautifully into what it takes for people to grow up big and healthy!  I have no idea if Henry will one day be a “picky eater”… but I’m sure helping to grow broccolli can’t hurt!

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Table Art

This one started rather unexpectedly from an overturned bowl of yogurt one afternoon.  Instead of just cleaning it up and going on with our day… we painted!  We used every utensil type implement we could find… including our hands and fingers… and created a masterpiece.

Then… to add to our artistic glory… we added ketchup!

Eating in the backyard - a favourite summertime activity!

Eating in the backyard – a favourite summertime activity!

Picnics

We love eating outside, not just for the lovely weather, but because we can experiment with foods even more outside.  Gone are the worries of messy floors, walls or chairs!  Sometimes we’re at tables, other times on our picnic blanket.. but where ever we are, we’ll be enjoying a good meal.

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Carving Pumpkins

This Halloween Henry was right into cleaning out the pumpkins.  I’m not sure if Shawn ever convinced him to actually touch the inside of the pumpkin, but he was right there helping with the “tools”.  We try to get him to feel as much as he is willing, but he still is a bit aversive to new textures and foods he is unfamiliar with.  This is typical of lots of toddlers, but I still think more so with Henry.  However he is getting so much better than he used to be!

IMG_2836Easter & Other Holidays

Any chance we have, we incorporate food into family celebrations.  This is hard as lets face it… just about any North American holidays is synonymous with food!  Here’s an example of our Easter treasure hint.

IMG_3016Baking

Henry loves to bake… we make cookies, pies and bread-machine bread most often.  He has his own apron (thanks to Grandma Gail) and stands on a kitchen chair at the counter to help.  Here he is trying out the rolling pin.  The only problem… someone has to eat the fruits of our labour!

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Marshmallow Building

I think I may have had more fun than Henry with this one!  Reminds me of some corporate training group activities I’ve done in the past.  It’s great for sorting by colour, size (depending on your choice of marshmallows), fine motor skills, and what kid doesn’t love building thing!  Plus, we practiced munching the marshmallows with the front of our teeth and on both sides of our mouths!  What fun :).

 

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Cutting & pasting food photos

We often read the newspaper together, and Henry loves to “read” the flyers.  Since we were practicing with scissors, we cut out food pictures that looked “interesting” (Henry got to choose, and he told me some great stories about why he choose some pictures), then we glued them onto paper.  He started cutting, then I finished when he got tired.  Lots of fun!

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Eating with a syringe

For the past two weeks, we’ve been trying out using a syringe to feed Henry, instead of his feeding pump.  And I’m thrilled to say that overall it’s been a success.  Sure… there have been some “bumps” along the way, but what in life actually goes like planned?!?

Since we maxed out the rate on his feeding pump, Shawn & I knew we would have to find another method of feeding Henry, but weren’t sure how exactly we would do it.  As I talked about in my last post, Henry’s pump has served us well, but with a maximum rate of 600ml/hr, as Henry grew he was beginning to eat more than the pump could provide him in a reasonable length of time.   It is important to us that Henry continue eating bolus meals (versus eating continuously) and doing so within about 30 minutes.  For an explanation of why, click here.

We have tried using a syringe before, always with limited success.  We found it messy, disruptive to our mealtimes, hard to push, and Henry would often throw up when we used one.   However other people wrote about how nice it was to use a syringe: less waste, quicker meals (depending on the person’s tolerance), no “pump” sound and errors.  So we put the idea on the “back burner” for a while and endevoured to keep trying as Henry got older.

Lately, I have been reading as many blogs as I could find about eating with feeding tubes, to see what other people recommend.  The best resource I found was the “you start with a tube” blog I posted about recently.  There it listed some suggestions on making things easier.  Things that have worked for us include:

  • using food to coat the rubber part of the syringe to make it slide easier.
    • Previously we used oil (olive or canola) – which someone else recommended – but found this very messy.  Everything ended up coated in oil and was hard to clean.  Plus, the rubber expanded faster once coated so the syringe barely lasted half a day.
    • We’ve still had our share of mess.  If the tube gets clogged and you keep pushing, eventually the syringe falls out and food goes spraying out everywhere (trust me… we know!).
  • drying the syringe inside the barrel.
    • our first nursing support coordinator would be horrified to hear this!  She always stressed that germs grow in moisture, so the syringe must be dried apart to ensure food safety.  And she’s right.  But… we tried it anyways and have found the rubber doesn’t expand outwards as fast when we do this and it’s easier to use the syringe.  Since we wash it with hot water each time, and only use a syringe for one day, maybe 1.5 days… we’re continuing.

I was surprised at how well Henry has done with the syringe… given how hard it was for him before.  Having said that, he’s older and so much stronger now that it makes sense that he would tolerate it better.  Using the syringe has resulted in so many benefits, some we hoped for and some unexpected ones too!

  • We can feed him more food and a shorter time
    • with the pump he was typically eating between 270-300mls each meal.  This would take between 30-40 minutes. Often he would say he was full, when really we thought he was just tired of the having the tube attached and wanted to be free of it.
    • with the syringe we’ve been consistently feeding him 300-360 mls over a 20-30 minute period.
  • Consistent measurement.
    • the fact that I know how many mls my child eats is often quite surprising to other parents, but it’s important for us.  Since Henry doesn’t usually say when he’s hungry or full, it’s how we ensure he is getting the food he needs.  With the pump, the dose varied greatly depending on the consistency of the food.
  • No error messages!
    • It’s no secret there are things about the pump that really irked me.  Not having the constant sound in the background is kind of nice.  As is the lack of beeping from error messages.  Plus, the food doesn’t need to be quite as finely blended when using a syringe.  Still must be careful as we don’t want to clog his button instead… but so far so good.
  • More mobile
    • without the food bag attached, Henry can move around easier.  We leave his extension tube on, so he still needs careful, but it’s easier than the pump.

Some of the unexpected benefits include…

  • no more nighttime meals!
    • with our goal of feeding Henry 6 – 60ml syringes (360mls) per meal, this allows us to try not feeding him at night.  He would be getting enough calories & fluids in 4 meals (breaky, lunch, afternoon snack, & dinner) that we could cut out this last meal.
    • When we’ve tried this before, he has typically awoke hungry in the middle of the night.  This time, we kept trying and so far so good.
  • Better sleep!
    • Not just us… but Henry too!  We always suspected that feeding him at night resulted in him not sleeping well.  Try going to bed after a big dinner and see how your tummy feels!  He seems to digest his food very slowly at night, so would often wake up with a sore tummy.  Plus, he would wet through multiple diapers and wake up crying each time one needed to be changed.
  • Happier child!
    • One of the main reasons that pushed me to try the syringe again was the fact that Henry would often start to melt down between meals.  I could see his energy levels decline; his irritability increase; and his overall demeanor would change.  You could literally see him running out of energy before your eyes.
    • We needed to either feed him sooner; or get him more food each time.  We tried eating sooner… but this isn’t always possible, and sometimes it felt like we were spending our whole time eating.  More food… more calories… more energy – that was our goal.
    • Since we’ve increased his food at each meal, he just seems happier and has more energy!

Now… don’t get me wrong… we haven’t solved all the world’s challenges with this little change.  But it certainly has made a difference in our world.  Are our pump days gone forever?  No, definitely not.  But at least there’s another option.

Right now we’re funded for two syringes a week, so if we continue with this we will need to request our funding be adjusted.  I don’t anticipate this being a problem though, as syringes cost less than food bags.  And if all goes well, then we will use less bags.  We still use the pump occasionally, sometimes because Henry asks for it, and sometimes because he’s not feeling well.  The slow, continuous rate of the pump is still easier for him to tolerate.

All in all… it’s been a positive experiment!

Cheers, Shelley

 

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