Henry's Homemade Formula

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

Henry’s Nutriport brand feeding tube

Henry has been using his Nutriport brand Skin Level G-Tube by Kangaroo for several months now, so it must be time to describe our experiences so far.  To sum it up… so far, so good!

We switched from the Mic Key to the Nutriport earlier this year as the Mic Key kept coming out – both with the balloon popped, and with it still inflated (ouch!).   So after lots of internet research, and a meeting with Christine – the g-tube nurse at BC Children’s Hospital, we made the switch.

 

A Quick Recap of Choices:

MicKey – the first choice in BC for most patients.  Seemed good at first, but Henry’s kept falling out.

Nutriport – very similar is shape and design as the MicKey.  The balloon has a slightly different shape.  Is also replaced every 3 months, at home, by the caregivers

BARD – a more “permanent” button, it is similar in shape but is only replaced once per year, typically in radiology and while the patient is under anesthetic (especially with younger patients).

AMT – according to blogs, it is well liked, but cannot be accessed in Canada as there is no Canadian supplier.  Apparently families would need to travel to the US to obtain on.

 

A Brief Description:

The nutriport is a skin level g-tube, meaning it is a low profile device that sits close to the skin.  It comes with both bolus and right angle extension tubes, although we primarily use the bolus one.  This button does sit slightly differently above the skin, and this is an unexpected benefit for Henry.  While the MicKey “under side” is flat on the side, the nutriport has two “feet” that raise it up ever so slightly above the skin.  This seems to result in better air flow around the stoma (the technical term for the hole into Henry’s tummy), and less irritation.  But beyond this, it functions pretty similarly to the Mickey.

 

A Few Photos:

Henry having breakfast :).  His pj’s typically cover up the button, so you can just see the tube coming out from underneath.

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A closer look at the button itself, with the extension tube attached.  We use the bolus extension tube (designed for “meals” versus the right angle tube designed for continuous feeding).

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Here’s another photo of just the button, with the flap open but no extension tube attached.  Those people familiar with tubes will note that it look very similar to most other skin level g-tubes.

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Here’s a photo of the two types of extension tubes.  Here’s where the nutriport and the Mickey differ.  We find the nutriport tubes to be far superior in terms of longevity and usability.  They are longer and wider (a drawback for someone who is volume sensitive), but make them much easier to use for homemade blended meals.

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A comparison of just the bolus tubes – which are typically the ones used with homemade foods – really shows how the nutriport’s are better for this purpose.  The Mickey’s bolus tube has a permanent angle, presumably to make it easier for self feeding.  But most blogs I read found this counterproductive, and personally we hated it.  In addition, the Mickey’s bolus tube has no port closures at the end.  Meaning that between syringes, even when clamped food would leak out.  The nutriport’s bolus tube has the same port closers as their right angle tube does.  Plus it is a flexible tube with no permanent angle, making it much more functional for both self feeding and care giver feeding. Overall, so much easier.

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Here are two photos of the button itself, first the nutriport and then a side-by-side of the nutriport and Mickey.  In the first photo, you can see the two small “feet” that raise it up ever so slightly.

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In this one you can see the difference in attaching the extension tubes.  The Mickey’s tube are the “click and turn to lock” style.  Meaning that once attached the extension cannot be removed until it is turned again.  Seems good for ensuring the tube doesn’t come out during feeding, but somehow with Henry’s wiggling, it would come off anyways.  And neither Granny (Shawn’s mom) or Grandma (my mom) got the hang of attaching the tube… blame it on their failing eyesight.

The nutriport is just a “push in” style.  There is no turning to lock required… just a solid push and it’s attached.  This took us a while to get used to, and you have to ensure you have a good grip on both the tube and the button to attach it, but now it’s no problem.  This also means that it can come out easier.  At first this seemed like a potential problem, but really it’s been a benefit.  It certainly doesn’t pull out easily, but in case it gets caught (like in a cupboard door), or pulled (like by a 10 month old younger brother) instead of pulling out the whole button or damaging the skin, the extension tube simply comes off.

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Here’s a side by side of the two different buttons with the balloon inflated – Mickey on the left and nutriport on the right.  You can see the slightly flatter top of the nutirport’s balloon.  We think the “egg” shape of the Mickey might be why it was falling out – literally being pulled through the hole.  The flatter top of the nutriport balloon hopefully keeps it in better.  Again… so far so good.

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Pro’s

  • It hasn’t fallen out!
  • extension tubes better suited for homemade blended food: wider tubing, ports that close on bolus tube and more flexible.
  • extension tubes stand up better to longer use.  The Mickey tubes would discolour and begin to permanently crimp after about a week, making it even harder to use a syringe.  The nutriport tubes clean easier, don’t discolour and don’t crimp.  We used one bolus tube for over 3 months, and with good cleaning it was still as good as ever.  I know, not recommended, but we couldn’t get any other bolus tubes at the time, so we had to make it work.
  • The “feet” raise the button up slightly, and this has reduced irritation and redness around Henry’s stoma.  He doesn’t have much trouble with it anyways, other than a bit of itchiness at times, but now it is even better.
    • he used to get some leakage from around the button. Not out of the button itself, but out of the stoma.  This was considered common and we typically had to change his shirt daily as it would be discoloured on the inside.  Now he has almost no leakage, which we attribute to the different shape of the balloon.

 

Cons:

  • It is less well-known, at least here is BC, which made getting supplies a bit of a challenge at first.  But a huge thank you to Christine from BCCH for helping get the tubes for us.
  • the extension tubes are considerably wider, and the right angle tube is a lot longer, than the Mickey.  Could be a drawback for a person who is very volume sensitive as it takes up to 30 ml of water to flush.
    • another drawback of the wider tubing is that chunks that would have been caught in the Mickey tubing, now get caught in the button itself.  We have less clogs overall (which is great!) but end up clearing the button more often than the tubing.
  • The buttons tend to leak fluid when open.  It isn’t typically a large amount (maybe 1 ml), but the Mickey rarely did that.  Our first button leaks a lot… like pooling on the floor a lot.  Christine from BCCH recommended changing it earlier than scheduled in case it was just an older button or defective.  We haven’t had that problem again since.
    • however the valve is more sensitive on the nutriport, so if even a small piece of food is caught in it, it will leak.  Typically it is easier to clear and this resolves any leakage.  Fine for us, but still not very nice.

 

Summary

Over all, we’re happy with the switch and would recommend it to others.  It is especially beneficial to those people wanting to have a homemade blended diet, and we find it makes a HUGE difference in this regard.  Plus… it hasn’t fall out!

 

As always, if you have any questions, please feel free to comment.

 

Cheers, Shelley

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Arg…. “Chunky” food that needs to be strained :(

As you may recall, we’ve been having trouble with our blender lately.  It has been over heating and shutting off for no apparent reason.  As we await the new blender’s arrival, I’ve been challenged some days to get Henry’s food blended well enough.

The result: we’re straining every meal :(.

Of course… Henry thinks this is the best thing ever and is having a blast… so I suppose I should take his lead and enjoy :).

 

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In attempt to see all things positive, here’s a quick tutorial on straining “chunky” food:

First (and most importantly for us), let your 3 1/2 year sit on the kitchen counter.  This will make all subsequent steps much more fun!  We ended up warming up the food as usual (measuring into a 1 cup pyrex measuring up, adding a splash of water, microwaving for between 25-45 seconds depending on amount).  I found warmed food strained easier than food straight from the fridge.  Once it was warmed, we used a standard wire mesh strainer – the type that sits on top of a bowl is nice – and a mini whisk.   Just make sure the wholes are small enough to catch all the fibers or chunks.  We used a 4 cup measuring cup to sit the strainer on top because we could then syringe the food directly from there.

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Here’s a  photo of what we “caught” in the strainer… no wonder his button was clogging!  As far as I can tell, I think the orange chunks are peace skins.

IMG_0920IMG_0913Unfortunately, even with straining the food, Henry’s button still got clogged a few times.  I did the usual – tried “pulling” back on the syringe to unclog… tried flushing with water… tried pushing the food through.. but in the end it just didn’t work.

This next step is completely unauthorized, and every specialist, g-tube nurse and pediatrician you talk to would cringe when told.  However, when researching how to unclog buttons when the “standard” protocol doesn’t work… just about every blog described using a toothpick.  And you know what… it works!

Yes, you must be careful.  Inserting the toothpick too far in the button could damage the one way valve and permanently damage it.   I don’t think I could actually hurt Henry… it’s not like I’m going shove the entire toothpick through his button into his tummy.  I guess if I did, it might hurt him, but I think I’m smart enough not to do that.

What I did do was visually inspect his button and try to remove what I could with my finger and then a clean cloth.  Then I used a tooth pick to “sweep” around the inside of the button.  Not directly into the valve – at least not at first – but just around the inner edges of the button.  And I got a lot out.

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But it wasn’t enough and the button was still clogged.  So I gently rubbed against the valve with the toothpick and removed one chunk that looked like a small piece of quinoa.

and….

problem solved!

(only to be repeated about 100 more times over the next few days!)

One thing that I have noticed about the Nutriport button (versus the mic key) is that the inside of the button – the space between where the extension tube attaches and the valve, seems a bit larger.  It’s nothing noticeable from the outside, but there’s a bit more room in there for food to hang around in.  At first I thought this might be a problem, but I think it’s actually a bonus.  Instead of getting caught inside the actual valve, most of the chunks were just inside the button and fairly easy to remove.  If they had been pushed farther into the valve it may have been harder to unclog and might have been damaged in the process.

 

Another one of those “not very pretty” things that somehow just becomes “normal” pretty quick.

cheers, Shelley

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Blender Breakdown… again!

Let me start off by saying that I love my Vitamix!!!!  And I really love Vitamix Customer Service!!!!

However… I love it less and less each time it breaks.  And this time… it was serious :(.

IMG_2541First… a little reminder…

We NEED this blender.  It’s not a toy or a fancy accessory… it’s how Henry eats.  No blender = no blenderized food.  No blenderized food and Henry can’t eat.  So we NEED this blender to work!

It’s broken down before,  but not this seriously.  The last time, customer service was able to send us new parts and we replaced them ourselves.  It never actually stopped working completely…

This time… it stopped completely!  I panicked…. SERIOUS panic!

We had been having trouble with it overheating and shutting off.  There is a built is auto shutoff, designed to ensure the motor doesn’t overheat.  A good thing in case someone is working it too hard, or using the wrong speed to blend something.  Simply wait a few minutes and it turns on again just fine.

However our machine was shutting off all the time.  And for no cause that I could determine.  I’d already contacted customer service and arranged a loaner so we could send ours in for repairs, so I was feeling confident.  Because we use the blender for “medical reasons” they will “sell” us a loaner machine for which they refund back all changes for once it is returned.  So yes, it costs a few hundred dollars, but it all works out in the end.

But the very next day, the machine quit and wouldn’t turn back on.  We always have some food frozen as a backup, but since parts are shipped from the US, it typically takes a week to get anything depending on how fast it goes through customs.  I didn’t have this much food.

 

So back on the phone with customer service…

In the end, I went to a local retailer that sells the Vitamix and purchased another one (another $600 on my Visa).  We used it for a week until our loaner arrived and then returned it.  I felt guilty, but it’s what customer service told me to do.  Apparently they allow all their retailers to accept returns with no questions asked.

A month later we got our original blender back with just about every thing replaced – at least that is what it looked like from the parts inventory included.

You’d think the story would be finished…. but no 😦

A couple of weeks later and the blender started turning off again.  I’d reduced the batch size… increased the liquid… and still it shut off.

 

So back on the phone with customer service…

This time… they are sending us a whole new blender! Yeah!  Since we never had any trouble with the two loaners… it must be something with our machine.

This is what I LOVE about Vitamix…

Every time I phone customer service they are FABULOUS!  I wish we didn’t have these troubles to begin with… but I am so pleased with how we have been treated.  And because we need it for medical reasons, they go out of their way to find solutions that will work.

THANK YOU VITAMIX!!!!!!!

🙂 🙂 🙂 🙂

 

(and cross your fingers our new blender is trouble-free!)

 

Cheers, Shelley

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New Boots!

Gotta love them boots!IMG_0901I actually debated A LOT about getting Henry boots.  He can’t wear his orthotics in them… which he really should be wearing as much as possible.  On the other hand… he needs something to wear outside in the rain.  It’s just not fair to tell a 3 1/2 year old that he can’t splash in the muddles for fear of getting his feet wet!  Last year we were forever trying to dry his orthotics and shoes out in front of the boiler.  In ended up that he was actually wearing them less… 30 minutes of fun outside meant wet foot wear for the rest of the day.

IMG_0902 So, I relented and we bought boots.  And they are cute :).

The compromise (in my own mind anyways!)… they will stay on the shelf in the coat closet and only be worn in heavy rain.  They will not become a daily occurrence (again… in my own mind!).

Cheers, Shelley

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Henry’s New Orthotics

We visited our friend Eugene at Hodgsons Orthotics earlier this summer, as Henry had outgrown his last pair of orthotics and needed new ones.  Sometimes I can’t believe how fast his feet grow!  The design is very similar to his last pair, with three straps covering the area from his toes to just above his ankles.   Notice the cool fish pattern this time :).  Henry needs Supramaleolar Orthosis, or SMO’s to help support his feet and ankles.  These are the lowest type of orthotics… meaning they do not reach very high up his leg.

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When wearing his orthotics, Henry typically takes a shoe size 1-2 sizes larger than what he would need otherwise.  And they have to be lace up… velcro or slip on just won’t go on over top.  He tends not to mind wearing them, and I think he knows that his feet need them.  In sock feet, his ankles sometimes turn and he falls more often.  Dr Reilly, our orthopedic surgeon, indicated that Henry will likely need some type of support for most of his childhood, especially during rapid growth spurts when his body is growing way too fast for his muscles to keep up.  On that note… we measured him this morning and he had grown over 2 inches in just under 4 months!

Here is a photo of what Henry’s feet look like when not wearing his orthotics:

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It’s a little hard to see, but his ankles turn in and he has very flat feet.  His left side is significantly worse, and he will actually drag his foot behind him when not in shoes.

But with the orthotics on, he walks with his feet almost parallel, and with much more control.

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We had some challenges this time around, with it taken significantly longer to get the orthotics.  The first set we received were of very poor quality, which didn’t make me happy.  But what I did very much appreciate was Eugene’s candid response that he was unwilling to give us an inferior product.  I didn’t even need to say anything – he beat me to it.  He remeasured Henry’s foot and ordered new ones that same day.

So… we waited longer, but in the end we got a new set of orthotics that will support Henry’s feet perfectly!

Cheers, Shelley

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Ice cube tray popsicles

 

Amina, our OT, has said many times that cold foods may help trigger a swallow.  Apparently the feeling of cold foods in your mouth can help signal to the brain that a swallow is needed.  So, to this avail, we decided to make popsicles!

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We love popsicles around here.  Just about any type of fruit juice will do.  To make them a bit more “kid friendly” I decided to make popsicles in ice cube trays.  Shawn had the suggestion to cover the container in plastic wrap and then use toothpicks as sticks.  By pulling the plastic wrap tight, the tooth picks can be “punched” through and the wrap holds them in place until frozen.

The sticks ended up a bit crooked, but not too bad.

However, after all this work… Shawn & Henry had popsicles for snack today and Shawn ended up with the small one and Henry the big one!

Oh well… such is life.

This was Henry’s first exposure to popsicles this year… he licked it a couple of times, touched it with his fingers, and watched it melt.  Complete success 🙂

Cheers, Shelley

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Henry’s orthotics

We visited our friend Eugene at Hodgekins Orthotics again about 1.5 months ago (I know… I’m a little late writing about this one!).   Henry is growing like a weed – like most toddlers – and his feet had gone through two shoe sizes.  Andrea, our previous physio therapist, always said to look for red marks.  If they didn’t look obviously too small, there were no red marks, and Henry’s wasn’t complaining of pain, then they were likely ok.  When we saw our new physio therapist for the first time, she checked his inserts and, since his toes extended past the front of the insert, she recommended going in.

As it turns out, he didn’t really need new ones yet – but since we were there Eugene extended the arch support a little bit, to buy us a bit more time.  For Henry’s type of inserts – SMO’s or Supramaleolar Orthosis – it doesn’t matter too much if the toes extend beyond the tip of the insert, as long it isn’t causing pain or redness.  What does matter is if the arch is extended too far beyond the insert’s arch support.

In Henry’s case, his toes were beyond the edge (thus his physio’s recommendation to go in), but his arch wasn’t too far beyond the insert’s support.  Since we were there, Eugene extended them, but if we hadn’t gone in… it would have been ok too.

Here are a few photos of the arch support.  Unfortunately it’s a bit hard to see, but the support is the “built up” white part (but as the whole sole is white… it’s hard to see the difference).

 

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We’ve got another appointment to visit Eugene next month, to start the process of getting fit for new ones.  Since it takes about a month from start to finish, off we go again!

Cheers, Shelley

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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…

mickey

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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