After a nine month wait for a feeding study we are finally here at Cheo to figure out how we can help Aiden get off g-tube and back to eating normal foods. Aiden has extreme difficulties eating and has been 99% Gtube fed for 2 years now, often coughing or gaging on food. I have questioned whether it is still physical difficulty and silent aspiration from when he first had surgery and could not eat, if it is the effects of chemo giving him no appetite, if it is because he had little to no oral stimulation in the last 2 years or if at this point it is a eating disorder and more mental health issue.
The full study includes eating food with different textures in a chalky paste called barium and then a X-ray machine watches the food go into his body and can see if food is going into lungs instead of stomach. It was to no surprise that Aiden absolutely refused to try the chalky paste but he did sit with the occupational therapist and showed her how he ate banana, banana bread and drank Tim Hortons peach juice (the only liquid Aiden will drink). We sat with OT and discussed different food Aiden liked and disliked. Some foods he said I have never seen him eat or I have seen him take one bite and gag and cry. Aiden also gets extremely emotional when we talk about food and how much or little he eats which also makes it hard to have conversation with medical professionals sometimes. After assessment OT did not feel it was a physical issue, Aiden seemed to chew and swallow ok which was a relief and we were able to cross one thing off.
I was asked if Aiden was followed by a nutritionist, we had seen one months ago when I was concerned with his weight and fluid intake and once when we first returned from Toronto but not one regular. A referral is now being put in to figure out plan to decrease feeds so Aiden is more hungry which could be a contributing factor to not eating. When we left Holland Bloorview Rehabilitations in Toronto we were told this would be the next step when we returned home but was never discussed again.
The second suggestion was to have Aiden chew gum and brush teeth more (even with no tooth paste) to increase oral stimulation. This was the one area I felt was a major issue in the difficulties eating. There is so much involved in the process of eating, I felt that it was difficult for him, guessing because he was not use to feeling anything in his mouth anymore. The final recommendation is to offer foods before feed and try to schedule feeds at family meal times so we can all sit together.
So let’s put this into play… that night back at home, dinner time which consisted of spaghetti and garlic bread. A pretty standard meal. I asked Aiden to put him iPad away and come sit with us for dinner like the OT suggested… well all of a sudden the smell is over whelming for him, the food is gross and he hates me for making him put the iPad away and he storms off to his room….. maybe we will try the chewing gum suggestion next
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Aidens passing has been incredibly difficult but a lot less difficult because of the love and support we have receive from family, friend and community. Thank you to everyone who has sent meals, condolences, and donations so I can take this time I need now to grieve and take care of myself and beautiful blended family. I am so incredible grateful for the support we have received.
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Stephanie (aka MamaOutpost)