Henry's Homemade Formula

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

Back to the hospital… and a new asthma medication

We were curious how far into the fall season we would make it before our first cold… well, now we know!  It’s not surprising, of course.  Between preschool, playgroup, motoring munchkins and music group… we’ve been fulling enjoying being 31/2 years old :).

ventolin

So, we spent the day in the ER.  Boy is it busy on a Saturday afternoon!  After waiting about an hour for a room (and we were triaged first priority) we started the asthma protocol.  Henry’s wasn’t doing that bad this time as he’s already had 9 puffs of Ventolin at home, and we took him at the first sign of difficult breathing.  He had one dose of Dexamethasone and then we waited to see if that was enough.  The ER doctor was hoping we wouldn’t need more Ventolin and Atrovent, but in the end we did.  But only one round each (5 puffs Ventolin and 3 puffs Atrovent) and then he was stable enough to come home.

Nice!

We are also starting a new medication – Advair – which replaces his Flovent.  From my understanding Advair is one step “up” from Flovent because it is a little stronger and contains two active ingredients: salmeterol and fluticasone.  These work to keep the air passages of the lungs open by relaxing the muscles and by reducing inflammation, swelling and irritation.  It is steroid medication, which makes me a bit nervous… but it seems to the best option to control Henry’s breathing.   Advair is a long term medication designed to help prevent asthma symptoms; it is not a rescue medication for it he is already having symptoms.  Dr Seear, our Respirologist, recommended trying Advair as Henry has been repeatedly admitted due to his asthma.

This year we are also going to try taking the Advair on a more regular basis.  While last year we only started the Ventolin once Henry was already having trouble breathing, this year we are going to use the Advair continuously over the winter.  We have two choices, and haven’t decided which one we’ll try first.  Either he takes one puff daily all winter.  Or he takes two puffs daily at the first sign of a cold.  We were leaning towards the second option as we thought it would involve less medication overall… but if he is continually sick it may not work out that way.  So we’ll see how it goes.

In the end… we know he’s going to get sick and we’re going to keep having fun anyways! We don’t believe in living in a bubble… so if the consequences of having fun are colds and a few trips to the doctor – then so be it :).

 

Cheers, Shelley

 

 

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Making a homemade blended diet… on the fly (with baby food!)

Arg… our fridge stopped working!  Upon reflection, it stopped working 2 days earlier, as Shawn had commented that the milk seemed a bit warm.  But I didn’t notice it until Thursday morning when I took the eggs out for breakfast.  Warm… very warm eggs.  Not good…

Because I didn’t notice in time, I ended up having to throw out most of what was in there… including the 3 batches of Henry’s food I’d just made the night before.  Arg…

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So… what do you do with two hungry kids and no food???

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Thank goodness for the emergency stash of baby food!

 

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Thankfully anytime the hand blender is involved, Henry thinks it’s fun!

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I always have a few jars of baby food stashed at the back of the cupboard, just in case.  I never quite knew what the “just in case” would be… but now I do!

If using baby food for a homemade blended diet for a g-tube, the “first steps” or “first foods” type works best.  It is smoother and typically doesn’t need to be blended.  Great if the power goes out!  In this case, I had a few jars of the “first steps” type and a some of the “second stages”.  The second stages were thicker and chunkier so needed to be blended smooth enough to go through Henry’s tube.

I combined the baby food with some rice milk (I always have a few of the non-refrigerated tetra-packs around), then added in some molasses and oil to boost the calories. If I was doing this longer term, I would have also added in some tomato pasta.

It certainly wasn’t the well balanced diet he typically has, nor as calorie dense… but sometimes you just have to make the best with what you have!

I always try to keep a few containers of food frozen for Henry too, and we used this up until I had the chance to blend another batch.  The refrigerator repair person came Thursday evening, and thankfully we are back up and running again.

Cheers, Shelley

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Funding cuts affect Henry

CFA

Ever since we entered the medical system, I’ve gotten used to advocating on Henry’s behalf.  It’s a “must-do” when your child needs extra support.  But it really sucks when there just isn’t enough money to go around.  I know money doesn’t grow on trees, but sometimes it would sure be nice to have an unlimited supply!

So when I heard about some reduction in services that might affect Henry, I wanted to learn more.  While I have talked with a number of people about this… please know that this is all second- or even third-hand information.  But it’s the best I’ve been able to do to learn more.

 

Henry receives a lot of his support from the BC Centre for Ability – (CFA) including physiotherapy, occupational therapy, and speech & language therapy (although we were recently discharged!), along with funding through the Supported Child Development Program.  And they offer so much more… all depending on what the family needs.  We are so fortunate to be connected with the Centre, and they have played a massive role in our lives over the past 3 years.

So… when I started hearing tidbits of information that the Centre was struggling, laying off support staff, reducing services, reevaluating funding contracts… it goes without saying we were concerned.  From my understanding, the Centre is supported financially through government funding and private donations.  The Centre for Ability Foundation is a registered charity that raises funds for the Centre’s various programs.

From what I have learned, the recent staffing reductions and other cost-saving measures are due to a change in government funding.  Our current provincial government negotiated contracts earlier this year.  However after that last election, the government no longer honoured those contracts.   As a result, the Centre planned operations based on a certain financial status, and now has to make changes due to the shortfall.  Again, this is just what I have learned so far.

 

So… what might these mean for Henry:

  • less frequent support visits from our physiotherapist and occupational theraptist
  • a change to some group visits held at the Centre’s offices, instead of private visits in our home
  • longer wait times for current services and any we might be wait-listed for in the future
  • more onerous, and more frequent, reviews for funding through the Supported Child Development program, which provides additional support at Henry’s preschool
  • Less support visits to the preschool
  • Less selection for therapy toys for both support people and in the lending library.  Toys that are broken not being replaced.

 

For us… these possible changes are all “doable”.  We’re okay, and will adjust.  Packing up the family and shlepping to the CFA  offices is certainly less convenient, and much harder with two kids, but we’ll manage.

But I think back 3 years… and this would have had a major impact on our lives.  It would have been the difference between getting the support we so desperately needed, and possibly giving up and staying home.  By the time we fed Henry (30-60 minutes), waited to see if he would throw up (30 minutes at least), cleaned everything up… we only had about 1.5 hours before we started again.  Plus I was still pumping everytime so Henry could have expressed breastmilk.   And we just weren’t comfortable feeding him outside our home.  It wasn’t that we couldn’t do it… but we were still learning everything and it just seemed more complicated than it was worth.  To have to try to do that every week, possibly more than once per week, in order to attend therapy… well frankly, we just wouldn’t have done it.  At least not as often.

We were lucky.. in the beginning we got to see our therapists about every 2 weeks.  Henry’s development was changing so quickly that we needed to frequent visits to stay focused on what we could do to help him.  And we got the support we needed… and more.  THANK YOU!  Now that Henry is older, we don’t need visits so often and usually see our therapists every 4-8 weeks.

We continue to so appreciate how they go above and beyond to help make our lives easier.  There really aren’t words to express our overwhelming gratitude.  Coming to our home means Henry is in his home environment.  We can work with what we have around us for therapy which makes it easier to consistently implement their suggestions.  And it’s much easier to fit therapy into our lives… versus fitting our lives around therapy.  It may seem like only a slight grammatical change… but anyone who has multiple medical appointments for any reason can relate.  At some point it seems like the appointments are your life and everything else (including just being a kid!) takes a back seat.

 

So… I guess all this rambling on is just my way of saying…

 

THANK YOU CFA!

…and I am sad to think all this might have to change and I am even more sad to think of the families who might not get the support they so desperately need.

 

Shelley

 

 

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And the good stuff continues!

Today at breakfast Henry drank almost a full Ikea plastic glass of orange juice… that’s gotta be about 5 ounces!!!  Shawn filled up his cup 3 times… partially full each time, as finishing smaller amounts gives a feeling of success. Much more exciting to refill a glass THREE TIMES than to leave a full glass partially unfinished 🙂

Then this afternoon they made hummus and Henry ate three spoon fulls… Shawn figures one was almost 1/2 tablespoon full!  Swallowed… no problem… no concern… still chatting and smiling afterwards…

Yippee!!!!!

 

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OMG… He bit off some bread, chewed and swallowed it!

This is amazing… like I’m giddy amazing… like Shawn & I were both dumbfounded amazing… 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂

I know, there’s someone out there reading this who is wondering what the big deal is… but for everyone else…

HE DID IT!

Yesterday Henry bit off a piece of hotdog bun – about the size of a crouton – chewed it, and swallowed it!!

AND HE SAID IT FELT GOOD!

Before I go any farther… for our close friends and family – those people who will have the opportunity to see Henry… please read to the very end. 

There has been a lot of lead up to this… not just general progress over the past 3.5 years, but specifically in the past few months.

  • First he learned how to drink through a straw, which told us he could swallow larger volumes of liquid.
  • Then he “decided” he wanted to eat only through his mouth.  A great sentiment, but also a struggle as he didn’t want to eat through his tube.
  • Then he started talking more about foods that “melt in my mouth”, and began asking if the foods on his plate would melt.  Shawn or I would take a very small bite of said food and count how many times we chewed it before it would “melt” enough to swallow.
  • Over the past month he has been tasting, licking, biting and exploring lots of different foods.  He has done this consistently for quite some time, but this time it was different.  Typically he would try something for a day or so, and then stop and not try anything for a few weeks.  This time, he has been continuing for a longer period of time.
  • And like most kids… he discovered ketchup!  And began dipping anything and everything he could find in it, just to lick the ketchup off :).

 

And then it happened.  We were having hotdogs last night.  He asked if the bun would melt in his mouth. Shawn took a bite and said it was about 10 chews for it to melt.  So Henry took a bite – and teeny, weeny bite… and we counted together.

1-2-3-4-5-6-7-8-9-10…

Then with some coaching he used his tongue to move the bread around and chewed again

1-2-3-4-5-6-7-8-9-10…

And then it was gone…. 🙂

“It’s in my tummy” he exclaimed!!!!!!

“And… how did it feel?”

“it felt good!… I’m going to do it again!”

 

And the process was repeated with a slightly larger piece…

Once again he bit, chewed, moved it with his tongue, chewed more and it was swallowed!

 

And then he did it again… but this time he took a MUCH LARGER BITE.

I have to admit, I was worried.  I didn’t think he could swallow it.  I didn’t want this experience to end with coughing or panic.  I wanted it to end on a happy note.  So we counted and chewed… moved it around… counted and chewed some more… moved it around.  I think he chewed it about 60 times.  His chew is quite ineffective, so it took a lot to get it to “melt”.  You could see the saliva just about ready to drip from his lips.  This was pushing his comfort level.  But he was smiling – there were no signs of panic.  And then we say it… a swallow.

Suddenly he opened his mouth and it was gone.  SWALLOWED!

“And… how did it feel?” I asked anxiously…

“it felt good!”

OMG… HE DID IT!!!!!

 

And now I have a request… for those people who know us well and will see Henry… please say nothing.  That’s right…. absolutely nothing!  It’s not that I’m trying to be rude, but we have found in the past that when people comment on what Henry has eaten… he stops completely.  I know that comments are meant to be encouraging, supportive, and friendly… but Henry appears to feel pressured by them and backs off completely.  So please… don’t even bring it up when he is around… not with him or with us.  We know that you are as thrilled as we are… 🙂

 

Cheers, Shelley

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When did feeding my child become a medical procedure?

I wrote a post by the same name – so long ago now, it seems – when we were first introduced to g-tubes and buttons, syringes and pumps, bolus feeding and commercial formula.  Somehow Henry “eating” was no longer in the picture.  It was my attempt to claw my way back into his life.  To reclaim my role as mom, in a world that seemed completely foreign.   Now sadly, the same kinds of thoughts are swirling through my mind… but for a very different reason.

It is actually a very exciting time around our home… Henry will be starting preschool this fall.  I haven’t wrote about it yet, as I wanted to get comfortable with the idea myself first, but there will be lots more to come.

But with all this excitement comes a few challenges, and it is one of these that has ruffled my feathers a bit.  You see, while at preschool Henry will participate at snack time both by exploring the same foods the other kids are eating, and by eating a small snack through his tube.  The preschool teachers will learn how to feeding him… something that is both exciting and scary for me.  To be able to do this Nursing Support Services – part of the public health service – is involved with the training, writing of a “care plan” and follow up inspections to ensure that Henry is cared for safely.  It’s a wonderful service designed to make sure schools and day cares are as inclusive as possible. And I am very thankful for it.

However, it was part of this care plan… one little step… that has my mind racing…

put on gloves”.

It’s somewhere around step #10, after washing hands, warming up Henry’s food, and filling the syringe with water… but before putting on his extension tube.

“put on gloves”.

There is nothing that screams “NOT NORMAL”… “DIFFERENT”… “HAZARDOUS”… than the need to put on latex rubber gloves.  We are used to gloves in the hospital – everyone wears them.  Along with masks, gowns and sometimes face shields… it is the usual hospital uniform.

But do you need to wear rubber gloves to feed your child?  For most of us… the answer is no.

I get that eating through a food button isn’t exactly “normal” for most people, whatever “normal” may be.  I get that.  I’m not hoping for “normal”, but I am hoping for “normalization”… that lovely feeling that being different is just fine.  And all my interactions with the preschool teachers so far have left me with nothing but confidence. They talked about putting a food button on one of the dolls in the playhouse…using circular band aides to give all the kids food buttons… having all the kids lick their fishy crackers before eating them… or put teeth marks in their banana.  All things that make Henry’s food button a “normal” part of the preschool program.

So when I read those three little words… “put on gloves”… my dreams shattered.  Melodramatic perhaps… but that’s me.

The problem is, when I asked about the need for gloves, I was told a perfectly logical response.  Anytime a care giver may come in contact with bodily fluids they are trained to wear gloves.  When using a food button, it is common that a small amount of gastric fluid, or stomach juice, leaks out.  It’s not a lot, but it does leak.  For us, that’s just a part of life.  But I get that someone else may not want my kid’s stomach juices on her hands.  I get that.

And that’s my problem… I get it.  I don’t like it.  But I get it.

When I asked if they “had” to wear gloves, I was told that it has to be their choice.  Some caregivers choose not to, but they cannot be pressured.  So basically… I can’t grovel, beg, plead or in any way make them feel guilty.  No problem.

But what do I do if they choose to wear gloves?  I really do not want Henry to eat with someone wearing latex rubber gloves.  That is not “normal”.  My first instinct is to say I “will not” have Henry eating with someone who wears gloves.  But so far I haven’t come up with any better options.

I want him to eat.  I want him to sit at the snack tables with all the other boys and girls.  I want him to explore foods with his mouth.  And I want him to eat through his tube.  And I want it all to be okay.  And I’m sure in the end it will be.  But right now… my mind is racing and I’m just not sure how to turn it off.

So… I spill out my thoughts in hopes that just writing them down makes things better.  So often it does.  And I’m crossing my fingers that this time it does again.

Cheers, Shelley

 

 

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Adventures with Food… some photos

Recently Henry has been really into exploring his food.  Here are a few photos…

 

Our favourite birthday party activity - decorate your own cupcake!

Our favourite birthday party activity – decorate your own cupcake!

When asked what he liked about the birthday party, Henry said... "I really quite liked the frosting!"

When asked what he liked about the birthday party, Henry said… “I really quite liked the frosting!”

"Look at my big tummy!" says Henry after tasting something at mealtime.

“Look at my big tummy!”

 

Mmmm.. .french fries and ketchup

Mmmm.. .french fries and ketchup

 

Steak!

Steak!

 

 

 

Sucking the juice from a watermellon slice... yum!

Sucking the juice from a watermelon slice… yum!

 

Biting watermellon - look at the teeth marks!

Biting watermelon – look at the teeth marks!

 

Chocolate milk moustache

Chocolate milk mustache

"Turkey" smiles

“Turkey” smiles

Corn on the cob!  Tasting the "corn juice"... aka... loads of butter and salt!

Corn on the cob! Tasting the “corn juice”… aka… loads of butter and salt!

Corn caterpillars...  we cut the niblets off the cob and made caterpillars.  Henry tasted each and every one of them and then spit them onto his side plate.

Corn caterpillars… we cut the kernels off the cob and made caterpillars. Henry tasted each and every one of them and then spit them onto his side plate.

 

As you can see… we’ve been having lots of fun lately!

 

Cheers, Shelley

 

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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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Goodbye Neve… our thoughts and prayers are with you

It is with sadness that we say goodby to Neve… Whitney’s little angle.  I never met Neve, but had the pleasure of chatting with Whitney several times, after she commented on the What is a G-tube page.  Neve was born with some complex stuff, to put it mildly, and never really seemed adjust to having her g-tube.  After many nights to the hospital, and I’m sure more tears than most of us can even imagine, she passed away during her afternoon nap.  She was at home and had a wonderful 5 days with her family before passing.

All this just reminds me once again how precious we all are, and how every moment really should be cherished… even the tough ones.  One book I read tried to re-frame getting your child to sleep as “treasure” time.  I’m not sure trying to sooth a screaming child to sleep at 2am is really “treasure” time in my books… but It better that than an eerily quiet home.

With love, Shelley

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