The End of Eating : A Boy’s Journey in Congenital Muscular Dystrophy

no eating

Darling Boy has always loved to eat.  When he was just starting table food, my mom made some of her famous barley beef soup,  mmm,  delicious.   We put him on some telephone books and tied him onto the kitchen chair with her leopard print scarf.  (All Italian grandmothers must have one.)  He smacked his lips and ate that soup like a champ.

It’s always been like that with his eating.  Everyone involved with feeding him gets pleasure because he enjoys it so much.  The assistants at his school would fight to see who could feed him because he had so much fun when was eating. People often commented  about what a big appetite he had because he was quite a skinny kid.

The trouble with eating started when he stopped gaining weight and fell off his upward line on the growth chart.  Although he can’t walk, he moves constantly so getting calories into him is important.  D.B.  is like a kinetic wire sculpture, There’s always a part of his body that’s moving; fingers grab for tubing, his feet fidget, he squirms and jerks and only stops when he’s asleep.   He used to be able to crawl and he would pull to a stand right in front of the t.v.  and sway to whatever he was watching.  That boy burned all his calories and then some. He didn’t need his food blended or chopped and would spit out anything that was too big a bite.

Then he entered his current school and the staff evaluated him to see which class would be a good fit.   At that time,  they said that he needed a swallow study because he was at risk for aspiration, which happens when food and liquid goes into the trachea and lungs and not the stomach.   Dutifully,  we took him to get one and found out that he needed to have his drinks thickened and his food either chopped finely or blended.

This worked for about a year.  Our neurologist suggested a g-tube and with much trepidation, he got one placed in August of 2013.  He was still getting most of his meals by mouth and we were using the g-tube for supplemental feedings and giving meds. It was great because he gained 25 pounds in about 6 months and grew taller as well. Even better, his seizures were better controlled because he wasn’t spitting out his medicine.

As this past summer progressed,  we noticed that he needed all his foods blended and would cough after each meal.  When we took him for his neurology check up in August and told the doc about this latest development, he suggested another swallow study.

D.B. was so cooperative during this test.  He’s really growing up and not as scared as he used to be when at the hospital.  After drinking and eating some barium laced food, the test was done and we met with the speech therapist that ran the test.

We found out that he was silently aspirating any liquid, even thickened, that he was drinking.  This means that it would trickle into his lungs and he wouldn’t give any signs like coughing or tearing eyes.  And when he ate, it would pool in the sinus cavity and some would go in his lungs.  She recommended that we give him no more than 2 ounces of food at each meal and use the g-tube for all his nutrition.

I was ok with this.  As long as he could still get the taste of food in his mouth, I was  happy.  This guy loves so much of what I make,  meatballs and mashed potatoes, like the good Italian-Irish- American that he is.  Darling Boy was the only one in the house besides me who liked the pumpkin chili I make.

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He had a shirt like this when he was in elementary school. D.B. always loved his pasta and his mashed potatoes.

The next day I got a call from the G.I.  office and I was told that after reviewing the swallow study,  the dr. felt it was no longer safe for him to eat anything by mouth.  They told me to keep him on the 3 cans per day and they would get me a follow up appointment with a nutritionist to see how much formula he needed.  I got the appointment for the next day and she figured out what he needed and what schedule to follow for his feedings.

These are the events as they happened.  The emotional reaction was devastating.  When I came home and told Darling Boy’s nurse, she said,  “but he loves to eat so much.” When you have a child that can do so little for themselves,  it’s a happiness to make them their favorite food.

I know this is the best way to keep him healthy.  The speech therapist explained that even if he wasn’t getting pneumonia from aspirating,  it was changing his lung function.  And we don’t want that in a kid with muscular dystrophy when we know that will eventually be a problem.

And that’s the other part that is so painful.  We are always waiting for the other shoe to drop.  When he got the g-tube,  I knew that down the road it would be his only means of getting nutrition.  I didn’t think it would be this soon.  The next step is having the breathing get compromised and of course that scares the bejeezus out of me.

It’s hard to watch your child’s physical abilities deteriorate.  At first it was his movement.  He never walked but he sat, rolled, crawled and even cruised on furniture.   He lost his pincer grasp as a toddler, now he doesn’t use his hands functionally. For a long time we had a plateau.  As a matter of fact, he wasn’t even looked at for a diagnosis  of muscular dystrophy until 2012.  Before that he was diagnosed with Cerebral Palsy.

He is growing and changing in many ways; definitely maturing physically and emotionally.  The boy has grown a little blonde mustache and unfortunately has developed acne. His ability to use assistive communication devices at school has improved greatly.  Just the other day,  I came home from  a dinner out with the girls and he said “home” as clear as a bell.

So we have the good parts: the funny sense of humor,  the big smile,  the small milestones.  And we have the miserable stuff.  But, being the funny guy that he is,  he lets me know that he doesn’t like the tube feedings.  At least once per week, he somehow manages to pull at his tubing and disconnect himself from the feed.  My silent ninja can use his hands when he wants to.

As I finish writing this, he’s getting his last feed in of the day.  He’s much better hydrated with the g-tube and staying healthy.  I will be thankful for that and deal with the other stuff when it happens.

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3 comments

  1. So sorry you can’t provide that particular kind of love anymore. I have fond memories of your mom’s awesome cooking.

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