Henry's Homemade Formula

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

Using a homemade blended formula at the hospital

While at the hospital last weekend, we brought in Henry’s homemade blended food from home.  As this has been a bit of a challenge in the past, I wanted to pass along how it went this time…
While in the ER, he was not eating anything, so it was not until we were admitted that the issue of his food came up.  Most people were curious about the blended foods, and overall we received support.  The doctors typically don’t know much about a blenderized diet, so can’t really comment one way or another.  I do need to “name drop” the name of our dietician, Ali Boyle from the Complex Feeding and Nutrition Team, and then there is a rather obvious sense of relief that since there is some hospital “specialist”  involved, they don’t need to worry about it.
However there was one area that keeps coming up and that is the Kangaroo pumps the hospital uses.
The older version of the pump (no longer used, I believe) could not be primed with the pump and our food tends to be too thick to gravity prime.  As we’ve experienced this before, we now know we must remember to bring in our pump from home.  So when I heard that the new version of the pump has a prime button, I was hopeful.
Unfortunately the newer version still didn’t work, but for different reasons…
The feeding bag tubing has a rubbery section which is the part that is inserted into the pump and around the roller ball. At the top end of this there is some type of filter – likely for good reason to stop the tubing from getting clogged.  However the machine was not able to get the food past this point in the tubing. And this was not even our food at full strength – it was 50% food, 50% Pedialyte.
I did a little research online, and according to the FAQs on the manufacturer’s website, the pump has been tested with a wide range of feeding formulas, included homemade foods.  It says the viscosity (or thickness) range should be such that homemade formulas will work.  So why it didn’t work with ours when it was at half-strength, I do not know.
We always bring our own pump, so it was no concern for me. But it was for one of the nurses. Since she did not know how to operate the Infinity pumps (the brand most home users in BC are provided with), she said we could not use it. She even went so far to say that we would need to switch to a commercial formula, despite Henry’s allergies, so that we could continue using the hospital pump. Thankfully we were able to avoid this issue all together as she was about to go off shift and the new nurse knew our pump and had no problem using it.
I have let Ali, our dietician, know of what happened.  One of her goals for this year is to begin raising the awareness of homemade blended formulas within the hospital, and put in place some basic protocols so hospital staff in any department have some resources to assist them.
I think as long as families know to bring their pump (and pole clamp & charger!), from home, it is not that big a deal. For the most part, people are very supportive and the doctors are fine to let me do as I think is best with his food. And if I ever need extra support, I can always call on Ali.
Cheers, Shelley
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Our weekend at the hospital with a viral lung infection

We spent a fun filled weekend at Children’s Hospital last week.

Henry started showing signs of a cold last Wednesday evening, with a snuffed up nose and coughing. By Friday he was throwing up quite a bit and just wasn’t himself.  None of this concerned us too much… anytime Henry is feeling just about anything – from a mild cold, stressed out, or just tired – the first thing that will happen is vomiting.

Friday overnight we started a low dose Pedialyte at 50 ml/hour, just to ensure he stayed hydrated.  We’ve found that by giving him Pedialyte slowly overnight it seems to help his system calm down and he often wakes up feeling at least slightly better.  No luck this time… he kept throwing up overnight… the liquid just kept going in through his tube and out through his mouth.

This got me worried…

Henry almost NEVER throws up straight Pedialyte, especially such a small amount overnight.  Something was up.  Add to this the fact that he didn’t want to lay down.  He was trying really hard to sleep, but every time he would lay down he started immediately crying and sat back up again.  He ended up falling asleep sitting up leaning again my stomach.  Through this, Shawn was trying to sleep in the spare room, as he was also sick and coughing all night.  Needless to say, it was a very long night for everyone.

At some point overnight, I noticed Henry’s breathing was getting louder, but his nose was so stuffed up that I didn’t think much of it.  But by Saturday morning we knew something more serious was wrong.  He was trying so hard to breath that his shoulders were going up and down, his ribs showed, the area below his diaphragm was sucking in with each breath as was an area on his throat.  The noise that I thought was just congestion was louder and didn’t sound like just a plugged up noise.

So we packed up and headed in to the ER at Children’s Hospital.  Even though it’s a slightly longer drive, we always go to Children’s (baring emergencies, of course) and on a Saturday morning there was almost no traffic.  Since Shawn was sick too, he stayed home this time.

I knew it was bad when we went to check in and the nurse cut me off as I was explaining what was wrong.  She said she didn’t mean to be rude, but just watching him breath was enough to be immediately brought in and she didn’t want to me have to repeat the story more times than necessary. I tell you… if you ever have to go to a busy ER… have trouble breathing and you get right in!(not that I’d actually recommend trying it!).

They started him on oxygen right away and we got to see a whole loud of specialists.  Here are the three main things they were concerned with (described to the best of my knowledge)…

  1. an infected epiglottis: the most serious and least likely.  the epiglottis is the little flap of skin that closes off the airway when you eat so food doesn’t go into your lungs.  If this is infected and you are stressed it could close tight and not open, meaning no airway… needing  intubation (an airway put in)… and lots of other not-so-fun stuff.
  2. a bacterial throat infection: still not nice, but better than the first.  With antibiotics, assuming they work, it was be managed.
  3. a viral lung infection: there is no point giving antibiotics for a virus as they aren’t effective, so you just need to let the virus take it’s course.  Steroids can sometimes be effective to help open the airways.

Luckily for us, by a process of elimination they determined Henry had a viral lung infection.  But to get to this point he had to have a nasal scope (where they put a small camera in his nose and down his throat) to confirm that his epiglottis was ok.  You try putting a long skinny tube up your toddlers nose and see how much fun it is!  Now try it on a child who had an ng tube for 10 months… really not fun!  But he was a trooper and after being wrapped up sausage-roll style in a warm blanket, he managed ok.  Not happy, but recovered from the trauma fast enough.

Add to this a nasal flush (where they shoot warm salt water up his nose and suction out the secretions) blood tests, and then nasal prongs for oxygen and he wasn’t the happiest camper.  Especially given that he hadn’t kept down any food since the afternoon before.  He also had a chest X-ray to rule out pneumonia… but he loved that… gosh love X-ray technicians with bubbles!

We also tried some epinephrine (steroid he had to inhale for about 5 minutes) to see if it helped open up his lung passages, but there was limited success.  So by dinner time on Saturday we were admitted to hospital and on our way up to our new home for the next couple nights.

We were back in 3M, the ward we were in last time Henry was in hospital, so I already knew my way around.  But this time Henry was on isolation (viruses are contagious) so everyone was in masks and gowns, but this didn’t seem of much concern to him.  I think secretly he likes the hospital… he gets to watch TV there (we don’t have cable at home) and lots of people come to “play” with him.  The TV doesn’t last long… he gets bored with it, but it’s a nice distraction when needed.  He generally likes having visitors, but as he gets more lethargic his tolerance does go down.  But the nurses and doctors at Children’s are so good with kids and can make most assessments fun… or at least tolerable.

The earlier blood tests showed that he was now getting enough oxygen, but was having a hard time removing the CO2.  The results weren’t serious enough to necessitate immediate intervention, but we did repeat blood tests overnight Saturday. Henry fell asleep early on Saturday, but his breathing took a turn for the worse that evening.  He got disturbed for a blood test and while he fell back to sleep quickly, his breathing distress went way up and we had a whole load of people back on the room for a while.  Over the next few hours he calmed down again and slept fairly well that night.  He kept moaning and calling out in his sleep, but with me laying beside him on the bed he settled well.  (Plus his bed was much more comfortable than the cots!).

By Sunday he was perking up and starting to look his old self.  Daddy & Granny came for a little visit in the afternoon and this perked him up even more.   They started slowing reducing the amount of oxygen he was receiving and he handled it well.  By Sunday night he was completely off the oxygen and other than one scare overnight when his levels went way down (due to the sensor, not actually him) he was doing well.  He didn’t sleep well that night at all – another sign he was feeling better.  He actually noticed all the monitors, lights and beeping and this distracted him.  But by 11 pm he finally fell asleep.  Unfortunately I didn’t have the same luck, and the 2 am scare with his oxygen dropping only made me more awake!

We were released Monday and home by lunchtime… yippee!  A nice afternoon nap after lunch and we all felt a bit better.

Why did we end up in the hospital…?  Well, most healthy toddlers likely would have been able to manage on their own.  But with Henry’s low tone he just got tired out and his little lungs couldn’t get him the oxgyen he needed.  The harder he tried, the faster he got tired.  By giving him supplemental oxygen, this allowed his muscles to not have to work quite so hard, and this helped him to recover faster and ensured his little body got the oxygen it needed.

He is still coughing and sneezing a lot and will this will apparently continue for at least a couple of weeks as he slowly gets all the gunk built up in his lungs out.  Andrea, our PT, was over yesterday and had some suggestions for chest physio and other activities that can help with this.

Shawn’s also still sick with lots of coughing and sneezing and we figure he’s got the same thing Henry has.  Like father, like son :).   After all this, I’m still feeling fine, although a few more afternoon naps would be lovely!

Cheers, Shelley

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OMG… his tube fell out… again!

I realize that something happening twice per year doesn’t seem like a lot.  But having a feeding tube fall out two times in a year is a lot… or at least it seems like that to me!

The last time Henry’s tube fell out we were relatively new to all this, and I was a little shocked it had happened.  We’d been warned it might, and I’d read stories on other people’s blogs about tubes coming out, but I was still surprised.

This time… I’m proud to say I handled it like a pro (nope… no modesty here!).

Shawn was at work, and Henry & I had just come downstairs for breakfast.  I carried him and his blanket down the stairs and when I put him down, out came the tube.  I know it had just fallen out, because we’d just gotten dressed and the tube was still in when we changed his shirt.

I didn’t actually notice the tube falling out… what I noticed was the fountain gushing from my child’s belly.  Now… as mom… it is well within my rights to say… it was gross!  None of this slow oozing that we’d seen before.  This was a spouting fountain of stomach fluids pooling on the floor in front of me.

And the strange thing is… I was actually very calm…

I’m not sure why, but I just reacted and knew exactly what to do…

First I laid Henry down on his back and this stopped most of the fluid coming out.  I’m not sure why there was that much in his stomach to begin with given he hadn’t eaten since the night before, but that’s a side factor.  By laying him down, the fountain was contained.  And wonderfully enough… Henry actually laid very still. I don’t know if he heard something in my voice, or if he knew what happened… but he just lay there with his hand on his belly feeling where his tube normally would be.

On a side note, Shawn says he lays quietly for him when he’s checking the water in his balloon too… so I think he’s starting to understand that we need to do certain things for his tube and button and none of them hurt.

I grabbed a baby cloth from the kitchen and laid it across his belly to cover up the hole, then grabbed a new g-tube kit from the closet.  We always keep an extra one in the house – and I usually have two extras just in case one is defective.  I opened the kit, tested the new balloon to make sure it was fine, and went back to Henry.  Like a little trooper… he was still laying quietly on his back.  I didn’t even bother putting any lubricant on the end of the button that goes into his tummy.  It was moist enough, I just popped it right in with no problem and inflated it with water.

Drama over… all was good… and we were off to have breakfast.  I was apparently even laughing on the phone when I called Shawn to tell him what had happened.

I have no idea how the button got a whole in it.  There was a small pinprick size hole on the shaft just above the balloon.  The hole was in the same place as the last time his button fell out.  We’re pretty good at remembering to test the water level in his balloon to make sure it’s inflated enough – Shawn does it about every week.

Still… I am glad that then button had just fallen out and was easy to get back in.  If it’s out for too long, the whole starts to grow over and it’s harder, or even impossible, to put the new button in. Then it’s a much bigger deal and a trip to the Children’s Hospital ER.  But for today… it’s was sunshine and flowers… :).

Cheers, Shelley

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Henry’s updated menu

 

It’s been a while since I last updated Henry’s menu… here’s a breakdown of what he is typically eating on a daily basis.  For more details about our food choices, allergies and steps to blending the food, see the posts on preparing his food (a series of 3 posts), and his daily menu.  In the “lessons learned” category, there are other posts related to his menu also.

As Henry gets bigger and more active, he is eating more too.  Like all toddlers, he goes through growth spurts where he eats more, then goes through periods where he’s not as hungry.  Here’s his typical daily menu:

 

  • Grains – 1.5 cups
    • typically quinoa and brown or wild rice as these tend to blend the best
  • Veggies – 1 (roughly measured, often heaping) cup
  • Fruit – 1 (roughly measured, often heaping) cup
  • Dairy & alternatives – 1.5 cups
    • still using Ryza brown rice milk.  Have tried almond milk, but he seemed to have a harder time tolerating it.
  • Meat & alternatives – 2-3 ounces
    • still lots of chickpeas or other legumes, boiled egg, tinned tuna or salmon, or any left over meats that we’ve cooked for dinner.
  • Fats – 3 tbs
  • Extras -2 tbs molasses; one tablet of CoQ10 (to help with muscle function) and one tablet (1000 IU) of Vitamin D.
    • I now use a Vitamin D tablet that is blended directly into his food rather than the d Drops we were using previously.  This decision was purely based on cost.  The tablet blends fine, and while he doesn’t always finish all of his food, as it is a vitamin and not another form of medication, I don’t mind that he may not get the full amount every time.
    • It is recommended that all medications are given directly into the extension tube, and not blended into foods; so please do not make a change such as this without confirming that it works for whatever medication you may be using.

The increase to 1.5 cups of milk made a significant different in blending his food.  At only one cup, it was very thick and difficult to blend. But as his tolerance for increased volume improved and we could add more milk, suddenly his food is much easier to blend, smoother, and we have less error messages (although we still have our fair share!).

We are no longer using any of the PEG on a daily basis.  We found several months ago that Henry was routinely having very soft bowel movements and was having no difficulty pooping anymore. As we hadn’t changed anything with his menu, and it continued for several weeks, we slowly reduced his PEG.  We did find that when we stopped it “cold turkey”, this didn’t work and he got constipated.  But when we slowly reduced it he did just fine. Now he’s been off the PEG for a few months, and we’ve only given him an “emergency” dose once or twice when he seemed to be getting a bit “backed up”.

As far as I can tell… his ab muscles just got strong enough that he no longer needed the help.  If he gets constipated for too long he may get sick, so we keep an eye on how he’s doing and keep some PEG in the house just in case.  But all in all… he’s just a stronger little boy and doesn’t need the extra help he used to.

Many of these changes we have done on our own, some with consultation with Ali Boyle, our dietician with the complex feeding team and BCCH.

cheers, Shelley

 

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“More” or “all done”… that is the question.

As  Henry grows bigger and more active, the amount he eats has also grown.  Just like all toddlers… it’s a fine line between getting in the healthy foods we know he needs and him having a sense of control and independence at meal time.  In the past months, we have been focusing on asking him if he wants “more” or is “all done”.  We went through a period where he always wanted more… to the point that he would vomit.  Now we’re more in the stage where he is always “all done”.  Part of this is simply his communication skills improving as he gets older, and part of it is actually learning how he feels and if he wants more food.  Everything we’ve read has indicated that it can be a lot more challenging for kids who eat through a feeding tube to learn and understand the feelings of “full” and “hungry”.

Plus… he’s two… which means that meals should be over whenever there is something more exciting to do next!  We have to be careful not to talk about going for a walk, or playing outside, or whatever our next activity is, because then suddenly he is “all done” and onto the next thing!  It is hard that it takes him at least 30 minutes to eat his meal… which in the land of a toddler can seem like forever.  Shawn & I try to eat nice and slowly so that we continue to eat as long as he is.  That way we are all eating together.

We’ve come to a point that since Henry is doing so well, if he firmly declares he is done earlier than we think he should be done… then we’re done.  Not everyone eats the same amount at every meal, so why should he?   I find I still struggle with this at times, but I’m getting better at it.  It is very important to honour his cues of being hungry or full… and if he doesn’t eat enough at one meal, he’ll make up for it at some point.

We try not to coax him into eating more… unless we’ve just sat down and he declares he’s all done in order to get back to playing :).  These times, it helps that we’re eating together so we can say that mama and/or daddy aren’t finished yet so we all need to stay at the table a little longer.

I know some parents who believe it is there role to ensure their children eat enough.. and we’ve all heard parents saying something like… “just three more bites and then you can have dessert”.  This is something we try to avoid.  When Henry says he’s done, how are we to know better?  I realize we’re in a different boat, and Henry routinely has a well balanced meal through his tube… but it’s super important to us that he learns naturally when he feels he is full and when he feels he is hungry.  And unless he learns these feelings himself, and we honour those feelings and don’t try to make him eat more when he feels full, he will never fully understand his own body’s cues.

Since Henry’s fine motor skills are really good – he has been able to push the buttons on him pump for several months.  We find this works to our advance (most of the time!), as he can turn off the pump when he done.  We’ve gone through stages where it’s been a game, but we’ve always used the terms “taking a break” or “do you need a rest from eating”, and then started the pump again a short time later.  Now that his verbal skills are better, he can usually say what he wants, but there are times when he’s either distracted, or just not answering us for whatever reason.  We’ve found that simply putting the pump within his reach allows him to push the buttons when he is ready.

Of course… like everything else in life – this is all a work in progress :).

Cheers, Shelley

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Our lastest numbers… 10.7 kg and 86 cm… yippee!

We don’t go see Ali, our dietician, that often anymore as Henry is doing so well.  But we were at the hospital this week and did a quick check for weight and height.

And…

It is great!  (of course!).

Henry is trending exactly where he should be.  While this is nothing new to us, it is still nice to see Ali and have her officially record it in his hospital file.  He is between the 5th and 15th percentile for both weight and height… exactly where he has been most of his life.  His homemade blended formula is providing a wonderfully, well-balanced diet that is meeting all his nutritional needs. He may very well be one of the healthiest toddlers out there, with his daily diet of fruits, veggies, meats, grains and rice milk.

More than that… he loves food!  We make both his food and the family dinner together almost every day.  He knows all the foods we eat and eagerly wants to buy new things he sees in the store.  He loves grocery shopping and can repeat back most of the things we buy.  He loves being able to choose which foods to put into his blender food.  We break it down by colour – which green veggy would he like today: broccoli, beans, peas or sometimes asparagus or brussels sprouts.  Would he like banana or avocado (both are not a wise choice – too thick!).

He is willing to touch – either with his hands or a spoon – most anything we have; will either put in his mouth, touch to his lips, or kiss new foods; and eagerly makes table art with all sorts of smooshable foods.

If you saw us eating in a restaurant, you might never know that Henry is not actually swallowing anything.  And that is just fine :).

He will now…

  • drink small amounts of liquid (mostly water or chocolate milk!).
  • slurp his drink in order to keep it from drooling out (our mealtime
  • dip crackers or veggies into humus, guacamole, spinach or any other kind of dip I can find and taste it.
  • try to spit or remove foods purposely from his mouth, instead of just letting them drool out.
  • have larger quantities and sizes of foods in his mouth without gagging.  He almost never gags these days, and his cough reflex is much stronger should something get too far back in his mouth.
  • experimenting with biting hard foods like carrots, crunchy foods like animal crackers, and soft foods like banana.

Biting things has been one of our focuses lately, to get him used to the feeling of pressure on his teeth and jaw.  Because he does not eat… he has no experience with chewing foods… how foods change in our mouths the more we chew… how to move foods to the side for teeth to bite… or how to get foods back to the centre to prepare to swallow.

We are also learning to spit, which may sound odd to some people.  But Henry used to drool automatically anytime something got in his mouth.  It was amazing the river that would result!  So learning how to purposefully remove things from our mouths… by spitting, using fingers or anything else around is a milestone.  We do not particularly care if he swallows anything… our focus is on simply putting things around, on or in our mouths and then taking them out.  That is cause for celebration!

Finally… the homemade blended formula makes me happy to.  I have said it before, and I will likely say it again (and again and again!).  It gives me a role.  I think many parents forget what a privilege and honour it is to prepare food for their family. They see it as a chore… something that must be done and as quickly as possible.  I am sure if Henry had always eaten by mouth, I might have felt this way too.

But it is not a chore… it is a ritual. Something to be mindful of because some day that privilege may be taken away.  And by choosing to prepare food for Henry myself, instead of using commercial formula, I can also participate in this ritual.  No… not everyday do I  savour the experience… I am busy, disorganized and frazzled too.  But by default, making our food takes a bit longer and because of this… I either try to make it a special time of our day to share together… or begin to rue the day I chose to make a homemade blended diet.  As I really do not want the latter… I do my best to remember the former.

Cheers, Shelley

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