Tube Weaning - Day 5

It feels a little ironic that we are kicking off Feeding Tube Awareness week by saying goodbye to Max's tube meals. We're taking a pretty intensive approach to helping Max become an eater, and while we are being followed by our local feeding clinic, we are largely taking on the task on our own. This is in part due to the lack of supports in place for people who are tube fed.

Tube feeding is largely associated with end-of-life of care, and so many people don't realize how many children (and adults) rely on feeding tubes to live and thrive. There are myriad reasons why people need feeding tubes, from motility disorders, Eosinophilic Disorders, Mitochondrial disease, swallowing disorders, to name just a few. Feeding tubes are life saving. For some they are a temporary solution, for others they are a permanent need. Feeding tubes are a way of life for many families, and raising awareness is a small step to understanding and acceptance.

Max has been fed through a tube for his whole life - first through an OG (orogastric), then an NG (nasogastric), and now a G (gastric). During Max's first 6 months he underwent a great deal of medical trauma, much of it oriented around his face and mouth. He was intubated for months, undergoing several reintubations during that time. Even once he no longer had a breathing tube in his mouth and down his throat, he had a feeding tube regularly inserted into his nose and down his throat. This trauma left him with a severe oral aversion. He didn't like having his mouth touched, and anything even touching his tongue would make him gag and throw up. His g-tube allowed him to be nourished at home while he recovered from the trauma and learned to trust things near his mouth again. Unfortunately during that time he became dependent on his feeding tube, a common, but rarely discussed side effect of tube feeding.

Max doesn't eat because he has never felt hunger and does not know what eating is. That instinct is lying dormant somewhere within him. Eating comes with a certain amount of fear and apprehension for Max. He doesn't know how to suck from a bottle or straw, because he never learned as a baby. He has trouble chewing and swallowing food without gagging, because they are skills he has not had the opportunity to develop. Food does not yet interest him in the way it does other children. He can not be coaxed with a cookie, or a french fry, or some other special treat. Hunger needs to be his motivator, and for that to happen we have to stop feeding him. It's completely antithetical to everything we've been doing up until this point.

Tomorrow we'll wake up and go about our day, surrounding ourselves in food, but we won't feed our child. Max will grow hungry, and likely confused, and irritable, and he will face an internal struggle over his own identity. Max is not someone who eats. We're asking him to become a whole new person. He'll struggle, and fall, and hopefully get back up and nibble his way into a new him.

We are so grateful for the life that Max's feeding tube has allowed him. Hopefully, we are just beginning a whole new tube-free chapter.

Tube Weaning - Day 4

Max may not yet know just what is going on, but he does seem to sense that things aren't quite the same. He must be feeling the inklings of hunger, and I'm not really sure he yet knows what that means. Again, he wasn't fed breakfast, and his lunch was a quarter its normal size.

Once he awoke from his afternoon nap, we sat on the floor to share a snack. He nibbled through some veggie straws, biting off the ends and tossing them back in to the bag (we'll have to work on his food manners later). He wasn't nearly as interested in food during his afternoon tube-meal. He threw most of his food to the floor and stared off into space.

After spending the afternoon playing and taking a walk around the neighbourhood he seemed to be a little more on board with this eating thing. During dinner he was offered some tortilla pieces with peanut butter, which he licked a few times before tossing to the floor, and some veggie cheese shreds which he shoveled into his mouth as skillfully as he could manage considering their size and shape. One fist after the other took turns bringing tiny pieces to his mouth and clumsily pushing them in. He gagged once, and recovered, and continued nibbling. He shortly became disinterested as his tube-meal reached his stomach. He finished off his meal with some sips of water from the grown-up cup.

Later, during bath, Max insisted on bringing a spoon in the tub with him. We played, scooping tiny spoonfuls into cups and stirring it up. Considering Max's fondness for drinking bath water, I thought I'd see if he'd let me practice spoon feeding him (as it stands he refuses to let anyone near his mouth with a spoon). He opened his mouth about a dozen times and drank each tiny spoonful of water. Now, most people aren't too thrilled with their kids trying to drink the bath water, but we'll take just about any bit of progress around here.

Tomorrow we'll be feeding Max his last official tube meal. Monday we'll all wake up and try our best to help Max nibble his way to becoming an eater. We're nervous, but excited to give Max the opportunity to show us what he can do.

Tube Weaning - Day 3

Today for the first time, we didn't feed Max his breakfast through his tube. It was a little strange getting up and puttering around the kitchen, pulling things out of the fridge, filling bowls, plates and cups, instead of warming a bottle and pouring its contents into a gravity feeding bag.

Max's fondness for tossing his food overboard his highchair tray prompted us to move breakfast to the living room floor. A strange mishmash of foods was laid out on the floor for exploring, and mess making. Toast with peanut butter, and with jam, berries, oatmeal, fruit and veggie puree, veggie straws, wafer cookies, cups with soy milk, water, and berry smoothie. Max didn't waste any time diving in. He dumped out plates, stirred in bowls, mushed his hands in this and that, fed us his latest discovery, and had a few licks and sips.

We don't really suspect that he's going to do much in the way of eating until he isn't getting fed through the tube and real hunger sets in. For now he's just getting accustomed to exploring food and more fully participating in meal times. We're not quite sure what he's feeling right now, but after having no breakfast and a shrunken lunch, he woke up from his nap with a renewed interest in food. He nibbled his way through a couple of veggie straws and mushed around in a maple creme cookie.

Maple creme mascara

For dinner he had more fun dipping some roasted carrot and parsnip in some plum sauce. More licks, but nothing more.

Tomorrow we'll say our farewells to what's left of Max's tube lunch, and then on Sunday he won't be fed via tube until mid-afternoon. Lots of deep breaths!

Tube Weaning - Day 2

After a bumpy sort of night, we had a sleepy start to our day. Although Max's tube-breakfast was merely a shadow of it's former self, he didn't seem to take notice at the missing calories. Breakfast ended much the same as the day before, most of it on the floor. Max went about his morning playing. I brought out his sippy cup mid-morning, and he seemed happy to see it. He spent the better part of an hour in my lap sipping away at the cup. His drinking skills are not very well refined, and his shirt soon become a sopping mess, but I watched as he took mouthfuls of soy milk, and with much concentration, swallowed them down. He'd smile up at me every now and again and offer me a sip. Once he finally climbed down off my lap to continue playing I was surprised at how much he had drank (and spilled). He probably only consumed about 30mLs (1 oz) of fluid, but it's more than he's ever drank before.

Before and After

For lunch we had much of the same fare. Some crackers (that after one demonstration Max has learned the sign for) some melty puffs, and this time I broke out some sauces for dipping. For someone who doesn't eat, Max very much enjoys dipping just about anything. He only had one or two brief licks of a cracker and shoved one puff in his mouth (and ate it), but he had a heckuva time dipping.

 Then he was captivated with the empty mandarin container. He stirred a fork around inside, and then took turns depositing sticky, jam covered crackers into the container, shaking them around, and dumping them out again. He played for awhile before he began to tire and look very ready for his nap.

The rest of the day saw a few more timid licks and nibbles, but nothing out of the ordinary. Tomorrow Max's tube-breakfast will not come. Instead, we will take to floor as a family and play in some food. Maybe we'll even eat some!

Tube Weaning - Day 1

The time has come. Max's journey to becoming an eater has begun; although he doesn't seem to know it just yet. Today his breakfast was cut nearly in half. Tomorrow it becomes a tiny snack. On Sunday he will have his last official tube meal. Monday will mark the first day of his life that he doesn't have food delivered by tube to his stomach and a brand new feeling will creep over him.

We keep jokingly describing this process as starvation. We mostly choose this word to convey just how drastic a measure we need to take to get our child to eat. Really, we won't be making Max do anything. And we certainly prefer not to think of this process as starving him. We are giving him the chance to make a choice. We are allowing him the opportunity to feel something he's never felt before, and something most people take for granted. We are giving him the chance to decide whether or not he wants to become an eater. We hope that he will. We believe that he will. But that choice will be his.

This will not be easy for any of us. As much as we're looking forward to leaving behind the weight of plastic tubing that has been holding us down all this time, we're also leaving behind a certain familiarity. This is really all we've ever known. This is all Max has ever known. We'll be asking a lot of him over the coming weeks, and I know he will rise to the occasion as he has done countless times in the past.

Today Max didn't notice that very much was different. We spent a little more time in the kitchen, explored a couple of new foods, but otherwise a normal day. For now food remains another play thing - examined, banged around, licked, but ultimately tossed to the floor.

The remains of lunch

The coming weeks are bound to bring a whole new learning curve for all of us. It's sure to be an exciting ride.

Serious about playtime

Mum was telling me that she has been getting some complaints about the lack of content requests for more reading material. Something tells me something big is about to happen around here, so I'm sure you'll all have more to read soon. In the meantime, let me share some pictures (and video) of me doing the thing that I do best - playing!

-Maximilian

 

After my favourite play things - books!

 

Just taking a rest. Playing is hard work!

My bumble bee! I can ride it all by myself now.

Follow me!