Feeding Tube Awareness Week 2019 – Thursday’s Topic: Support

Today’s Topic: It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters. 

When I read my post from last year, I decided I only wanted to change a word or two.  So here’s an (almost) encore from 2018’s post about support.  

 

Whether it be a kind word, a hug, an offer to help or a smile… having your support means so much to us. When Henry was little, it was actions – help by picking up groceries, make dinner, ensure Shawn and I were eating and sleeping so we could take care of Henry.  Listen as I cried.  There was nothing anyone else could “do” to help Henry.  There was nothing anyone else could “say” to help Henry.  But they could help ensure we were taking care of ourselves.

It was the seemingly little things that matters so much.  I still remember the first playgroup we went to through the Infant Development Program – the lady there seemed like an angel.  For the first time in months we felt like we weren’t alone.  There were other families who could relate, there were people to help.  Yes… there was still something “wrong” with Henry, but suddenly our bubble got a little bigger and we weren’t so alone.

I still remember going to the first parent meeting at preschool; so scared because we had to introduce our children.  I was so scared to talk about Henry’s feeding tube.  Scared what other parents would think.  I was sweaty, clammy and could barely talk.  And it was fine.  People were fine.  I just about cried.

Fast forward almost 9 years and other people’s support still matters so much.  More than most people realize.  It’s the understanding that this is hard.  Nine years later and it’s still hard.

His tube still plugs… I still spray food all over the walls… I still go to Science World and forget his tubes so we have to get back on the Skytrain and go home… I still serve dinner and hope deep down that he’ll try some hummus tonight… that today will be the day he decides to start eating.  I still cross my fingers behind my back and say a little prayer every time he gets weighed at the doctors, hoping he’s gained 1/2 pound.

And I’m still scared.  Scared kids are going to laugh at him.  Scared someone’s going to say “that’s gross”.  Scared he’s going to be picked on.  Scared well meaning (or not so well meaning) adults are going to be rude.  And I want to bundle him up, go back inside our bubble, and keep him safe.  Yes, I know this isn’t practical.  Or realistic. Or even possible.  Yes, I know I need to support him to stand on his own to feet and have faith in the world.

 

So…

– When my Mom comes into town and feeds both the boys dinner… it matters.

– When people serve ice cream with whipping cream on top, so Henry feels he can participate in the meal… it matters.

– when Henry “serves” people appetizers (when they want them or not!), and people recognize this is him participating in the meal… it matters.

– when a stranger at the next table is curiously kind, and stares but not rudely… it matters.

It all matters.  The kind and the not-so-kind.  It shapes who we are as people, all of us.

I love that we have so many people around us who care.  I love that when we need help, there always seems to be someone available.  I love that when I cry, my friends cry to, and then they make me laugh.  I love that, even though our experience may be different than some, we are not alone.

Cheers, Shelley

 

Feeding Tube Awareness Week 2018: Support

Thursday, February 8th: Tell people about why their support matters.

IT MATTERS! 

 

Whether it be a kind word, a hug, an offer to help or a smile… having your support means so much to us. When Henry was little, it was actions – help by picking up groceries, make dinner, ensure Shawn and I were eating and sleeping so we could take care of Henry.  Listen as I cried.  There was nothing anyone else could “do” to help Henry.  There was nothing anyone else could “say” to help Henry.  But they could help ensure we were taking care of ourselves.

It was the seemingly little things that matters so much.  I still remember the first playgroup we went to through the Infant Development Program – the lady there seemed like an angel.  For the first time in months we felt like we weren’t alone.  There were other families who could relate, there were people to help.  Yes… there was still something “wrong” with Henry, but suddenly our bubble got a little bigger and we weren’t so alone.

I still remember going to the first parent meeting at preschool; so scared because we had to introduce our children.  I was so scared to talk about Henry’s feeding tube.  Scared what other parents would think.  I was sweaty, clammy and could barely talk.  And it was fine.  People were fine.  I just about cried.

Fast forward almost 8 years and other people’s support still matters so much.  More than most people realize.  It’s the understanding that this is hard.  Eight years later and it’s still hard.

His tube still plugs… I still spray food all over the walls… I still go to Science World and forget his tubes so we have to get back on the Skytrain and go home… I still serve dinner and hope deep down that he’ll try some hummus tonight… that today will be the day he decides to start eating.  I still cross my fingers behind my back and say a little prayer every time he gets weighed at the doctors, hoping he’s gained 1/2 pound.

And I’m still scared.  Scared kids are going to laugh at him.  Scared someone’s going to say “that’s gross”.  Scared he’s going to be picked on.  Scared well meaning (or not so well meaning) adults are going to be rude.  And I want to bundle him up, go back inside our bubble, and keep him safe.  Yes, I know this isn’t practical.  Or realistic. Or even possible.  Yes, I know I need to prepare him to stand on his own to feet and face the world – both the kind and the not so kind.  But a mama can dream just the same.

 

So…

– When my Mom comes into town and feeds both the boys dinner… it matters.

– When people serve ice cream with whipping cream on top, so Henry feels he can participate in the meal… it matters.

– when Henry “serves” people appetizers (when they want them or not!), and people recognize this is him participating in the meal… it matters.

– when a stranger at the next table is curiously kind, and stares but not rudely… it matters.

It all matters.  The kind and the not-so-kind.  It shapes who we are as people, all of us.

I love that we have so many people around us who care.  I love that when we need help, there always seems to be someone available.  I love that when I cry, my friends cry to, and then they make me laugh.  I love that, even though our experience may be different than some, we are not alone.

Cheers, Shelley

 

 
Today’s Topic is: It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters.1

Feeding Tube Awareness Week 2018: Benefits

Wednesday, February 7th: Benefits

​For this post, Henry helped by sharing his thoughts on the questions…

What has tube feeding meant for you?

Henry: Sometimes I like it but sometimes I don’t.  I like it because I never need to worry about choking. I don’t like it because I can’t taste anything. 

 

What benefits have you seen from tube feeding?

Henry: I get to eat what everyone else is eating.  We put in my left over food from dinner.  I get to choose what goes in sometimes.  I put in my chocolate coin from White Spot.  And part of my hamburger from McDonald’s. 

 

 

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…

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

Thank goodness for the emergency stash of baby food!

 

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

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

Funding cuts affect Henry

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

 

 

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

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

 

“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

Henry’s types of vomit

I know… a discussion on vomit seems like a strange topic, especially since I haven’t posted in such a long time.  But I have been emailing back & forth with Stef, who commented on a post a while ago, and vomit has been a prominent topic!

It’s a classic case of… “if I knew then what I know now”…

As a result, I thought I’d spend a few moments explaining Henry’s various types of vomit. For us, Henry various types of vomit were due to different causes, and once we learned to identify the different types, we could work on solutions. 

Type 1: Thin & Immediately at the end of eating

Sometimes Henry would throw up near the end of feeding, or immediately afterward. He would puke once, maybe twice, then feel immediately better. It was usually quite thin and looked almost the same as what had just gone in. The OT used to tell us it was reflux from his tube, but I’m now certain it was simply because we were feeding him too much. We used to feed him what the dietician & hospital doctors said he “should “ have… which was way too much for him. Once we started recognizing his signs for being full, and starting feeding him less, this type of vomit went down. Not away altogether, but a lot less. Plus he kept gaining weight because the food that was going in, stayed in!

I had a real struggle with feeding him less than what the”experts” said he should have.  I had visions of him starving; back in the hospital; near death.  When he was first born there was such an emphasis on getting as much food into him as possible, that it was very hard for me to let this go.  Even after I saw the feeding him less was working, I would still panic; feed him a bit more and make him throw up.  Then, of course, the mama guilt would be in overdrive.  But eventually I learned that less is ok; and as he continued to do well I continued to be more confident in my ability to decide for myself how much he should have.  This was very much inline with my overall confidence in Shawn & I being the “experts” on Henry… specialists are the experts in their particular field… we are the experts on Henry.

Type 2: thick, often between meals or at the beginning the next meal

This was the vomit that I really didn’t like. Henry would sometimes throw up 1 hour or more after eating. Sometimes it was near the next meal or even just after the next meal had started.

It was very thick, and he would throw up several times; not feel any better; and remain unhappy for a long time afterwards. The vomit was thick and had a lot of phlegm in it. He would often choke on it and couldn’t get it out of his mouth. We would take a cloth and try to help wipe out his mouth.

This vomit was due to his allergies. He just wasn’t digesting certain foods and they would stay in his tummy until it got so full he would throw up. Because he wasn’t digesting it, there would be a lot of tummy acid in it, and it was very uncomfortable for him to throw up. Sometimes if I fed him something with a particular colour (like red beets) I could tell that when he threw up, what was coming up was his food from 3-4 hours ago.

For us, it was Dr Bratt, the Naturapathic doctor, who first suggested that this type of vomit may be due to allergies.  I already suspected that Henry may be allergic to something and had searched until I found someone who supported me, but it was Dr Bratt who identified this particular type of vomit as possibly from the allergies. 

If the allergy testing hadn’t provided any answers, her next suggestion was a stool sample analysis.   We never had to do this test, so I don’t know a lot about it, but apparently if someone is having a hard time digesting foods, doing a stool sample analysis will show what foods are being digested as well as they should be, and what foods are not being properly digested. 

Type 3: Thin, Between meals

Henry did have some good ol’ fashion reflux vomiting, but it was very little compared to the vomiting that resulted from the allergies. His reflux vomit was generally between meals and smaller amounts.  It would often happen when he’s be coughing a lot, pushing in attempt to fill his diaper or laying down.

His core muscles weren’t strong enough so when there was any pressure on him abdomen his muscles couldn’t keep the food down.  Having an ng-tube may have exacerbated this, as his tube stopped the muscles at the top of his tummy from closing all the way, so liquid would escape easier. 

There wasn’t much we could do about his coughing, other than to ensure we turned off his food if he was eating at the time.  Even then, he would usually throw up.  We eventually started adding some PEG to his food which helped the vomiting when filling his diaper.  When laying down, we used a crib wedge to raise his head up a bit when sleeping and this seemed to help.

This type of vomit seemed to resolve itself as he got stronger. Once he was starting to sit up supported and his core muscles started to work, we noticed this got better. 

Type 4: Colds & flu

Now at just over 2 years old… Henry barely ever throw up. Any time he gets a cold, the first sign is often throwing up. I think he’ll always have a sensitive tummy. Even this is very infrequent now.  I think he’s thrown up once, maybe twice in the past several months.

There are definitely foods that he’s not “allergic” too, but that are harder to digest: beets, tomatoes (ok for one day, but not too many in a row), brussels sprouts, melons. Now… whether he’s actually allergic to them or not, I’m not sure. Foods won’t show up on the allergy test if a person’s never been exposed to them. So perhaps he is, maybe he’s not… I just don’t include them and it works out fine.

Shawn & I were just chatting about how different our lives are now compared to one year ago.  This time last year we were still trying various commercial formulas, Henry was throwing up constantly, and our lives were ruled by his stomach.  Now… sure… eating is still a bit different in our home.  But Henry eats lots of the same foods other toddlers do, he loves helping make dinner and we all sit down to dinner together at the table. 

What a difference a year can make!

Cheers, Shelley