Henry's Homemade Formula

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

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 6,200 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 10 years to get that many views.

Click here to see the complete report.

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600ml/hr maximum rate

We’ve maxed out the rate on the feeding pump… What do we do now????

The feeding pump we use is the Entralite Infinity Blue by Moog (formerly Zevex) and, for the most part, it has met our needs.   When Henry first started eating with his g-tube, he needed the slow steady pace the pump provided.  Any attempts we made to do “quick snacks” only resulted in him throwing up.   I was determined to feed him over no more than a 30 minute period, when possible… as everything I read said that if a child was to transition to eating orally, he would need be able to eat in a 20 to 30 minute period.  If it took longer, then the digestive system might not be physically capable of digesting food well enough for oral eating.  So… each time we increased the amount of food Henry ate, we also increased the rate.

I could see it coming… soon enough Henry would be eating enough to max out the pump’s rate.  The Infinity model has a maximum rate of 600 ml/hour.  Meaning that once Henry was eating 300 mls of food at a meal, he would be at the pump’s maximum rate.  Anymore food and it would take longer than 30 minutes to feed him.  Not only did this not support our long term goal of transitioning Henry to eating my mouth… but anyone with toddlers can appreciate what it’s like trying to get a 2 1/2 year old to stay at the table for longer than half an hour!

Henry’s actually been eating upwards of 300 mls of food per meal for several months… typically fluctuating between 270mls – 350ml.  And trying to engage… entertain… persuade… him to stay at the table that long is nearly impossible.  At times he would happily “eat” at the table with us, while other times we would finish our meal and he would finish eating while reading stories, listening to music, or playing.  We didn’t mind… Amina, our Occupational therapist, has always stressed that he need not be  in his chair the whole time… it was actually better not to force him to stay, but to end “mealtime” at the table once he was finished exploring his foods.

Having said this… the longer it takes to feed him the more challenges we have.  At times we were close to 45 minutes for him to finish his food.  No quick lunches and off to the park for us…

Lately the issue is coming up more often for a couple of reasons.  First, we just don’t want Henry’s meals to be the central part of any of our day.  Mealtime is important, but it’s not the only thing we do (and certainly not more important than play time!).  Secondly, as Henry eats more, the time is only going to get longer.

The second issue was becoming increasingly important…

  • We kept thinking that Henry needed to be consuming more calories in a day.  He is so active now and was often running out of energy and getting grumpy.  But when we would try to feed him more, he’d say “all done… no more food”.  We wondered if this was because he was full of just because he was tired of eating.  But we honoured what he wanted and would finish the meal.
  • We are still feeding him at night after he’s gone to sleep.  This is challenging as it means he wets through multiple diapers overnight (which results in all of us being up many times) and he digests food slowly at night so his tummy would hurt (trying going straight to bed after a full turkey dinner and see how you feel!).

 

We needed to find a way to feed him more food in a less time.  When we asked his dietician for advice, she recommended continuing with the 30 meals during the day and making up the extra calories at night… exactly the opposite of what we wanted!

 

So… why does the pump have a maximum rate so slow?  Because the majority of users never reach that rate.  And those who do transition to using a syringe for feeding instead.  We’ve tried using a syringe before with limited success.  Henry had challenges with the faster pace, and the pump was just easier to use.  But now we determined to try again… syringe feeding here we come!

Cheers, Shelley

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His tube fell out… AGAIN!

This is getting a bit redundant… this is the 3rd time this year Henry’s tube has come out (see June & Sept for other occurrences).  Once again, we were lucky that it fell out right in front of us so we were able to put a new one in right away.   Each time this has happened to us, it’s been in the morning, often right when he gets up.  It seems the balloon in his button gets a hole over night, perhaps when he is rolling around.  All the water leaks out and when he gets up in the morning the button itself falls out (for information about Henry’s g-tube and button, click here).

 

What this means is… while we’ve been lucky that we’ve always seen his button fall out… it could fall out while he’s asleep and we may not know until the morning.  This is NOT a good scenario… as the last thing we want is for his button to fall out and us not notice.  The human body is a wonderful thing and, when injured, it begins healing itself immediately.  As far as his body is concerned, his g-tube site is an injury and should his tube fall out for any length of time, the hole begins to grow over.  Too long a time goes by and the site is too small to fit a new button it.  This happens and it’s back to Children’s Hospital we go.

Best case scenario… they put it back in.  Worst case scenario… he needs surgery again to reopen the hole.

I know of one little boy Henry’s age whose button fell out overnight and he needs surgery to reopen the whole.  What a horrific experience it was for everyone involved.  I sure hope this never happens to us.

 

Each this his button comes out I contact out funding provider and file a complaint report.  This lets them know of the problem, and also must be done to get a replacement button set out.  The complaint file is sent to the manufacturer so they can investigate.  Once so far I’ve mailed the actual button in for them to see.

Each time I’ve been offered to receive a letter acknowledging the problem.  I never saw the point, I don’t need an apology letter… why waste the postage.  But this time I did request a post review follow up letter… frankly I’m just curious what they’re going to say!
Cheers, Shelley

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Henry’s Custom Orthotics

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Several months ago Henry received his second set of orthopedic shoe inserts.  Unlike his first set which where “off the shelf”, non-custom inserts, these were custom fit to Henry’s feet.  While they look and fit very similar to his first ones, these ones provide superior support and allow him to walk, climb and start running easier.

There were several reasons we decided he needed a custom set of orthotics:

  • his left foot continues to turn outwards and lag behind his right foot when walking.  He still appears weaker on the left side of his body and this is very much seen in his walk.
  • he is very flat footed.  While many kids are flat footed at an early age, Henry’s is very pronounced and leads to his ankles turning inward quite badly.
  • he continued to toe walk, especially when he is tired.  This adds stability and is ok for short periods of time, but he was doing it a lot.
  • finally, the additional stability of custom inserts provides him with the support he needs to continue developing his gross motor skills involved with walking, running, playing, climbing… all the things a toddler is supposed to do!

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We went to Hodgkin Orthotics, Prostetics and Sports Medicine  for his inserts and met Eugene Banziger, C.P.O.(c) – Certified Prosthetist and Orthotist.  We had already received a prescription from Dr. Reilly, Henry’s orthopedic specialist at BC Children’s Hospital.  In BC, for orthotics to be covered by any extended funding source a prescription is required.

 

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Henry’s inserts are supramalleolar orthoses (SMOs).   Orthotics get their name based on the body part they support, and this long word simply means the orthotic supports the leg just about the ankle bones.  Most commonly it is prescribed to kids with soft or flat feet.

I’ve written before about the nice and not-so-nice aspects of shoe inserts, and these are similar to his last part.  Wonderful in terms of offering Henry the support he needs; a pain in the butt in terms of putting on a wiggly kid and finding shoes that fit and are relatively easy to put on (boots seem out of the question).

Based on how fast he is growing, we will likely need a new pair sometime next year, so back to see our friendly orthotist Eugene we will go!

Cheers, Shelley

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“You start with a tube…”

It’s been a while since I posted again, but I wanted to pass along a website that I really like.  “You Start With a Tube” is the website of Eric Aadhaar, who passed away this past summer.  He ate through his g-tube due to some complex health issues, and this website is an amalgamation of his learning through personal experience, other people’s stories and research.

What I really like about it is the wide range of topics he discusses… from types of tubes, to making a homemade blended meal… to unclogging tubes.  His learning journey seems very similar to my own, except that he is experiencing things first hand, while I am learning through Henry.

This is always what really attracts me to his writing… his personal observations.  For all my hands-on involvement, I have no idea what it is really like to eat with a g-tube.  I really have no idea what Henry experiences when the food is going into his tummy, or when the pump starts and stops, or when we change his tube.  He is now telling up more about it, and as his language skills develop I expect we’ll hear more and more about what it feels like… but it’s not the same.  So hearing another adult describe the feelings – both physical and emotional – it brings me one step closer to what my little guys experiences.  For this alone, the website is priceless.

Beyond this, it also presents some great information about tube feeding in general, and making homemade blended foods in particular.  For a person new to this area, it would be a great resource to start with.

Cheers, Shelley

http://youstartwithatube.blogspot.ca/search/label/tubes

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