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… :).
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.
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 :).
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.
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.