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Searching Cure for Progressive Degenerative Disease


Gastrostomy Tube Surgery

Edit Category 病院 (Hospital)
左上の「Select Language」で「Japanese」を選ぶと日本語に自動翻訳されます。

I am writing this blog post at the hospital room.
We are staying 2 nights here.

Leo had a gastrostomy tube surgery this morning on June 29, 2017.

The surgery went well and he seems doing well so far.
Now, it is around 11 pm and he finally fell asleep.

Leo. I am so proud of you.
It must have been a scary and long day.
Leo. You did well.

We know you did not want it even this morning.
We didn't want it either, but we had to decide to do it.
And you did well. Leo.


It was 3 years ago when we found Leo had a high risk of aspiration due to his degenerative conditions.
Gastrostomy surgery was strongly recommended back then, but we did not think he would need it.
So we kept feeding him through his mouth in order to keep his ability to eat and use the muscles as much as possible.

My wife have made a tremendous effort to cook special food for Leo to bite and swallow as safe as possible.
The food has become soft cooked, then mashed, and finally pureed over the last 3 years.
She brings him home from school to feed for lunch and take him back to school for the afternoon classes.

Despite her dedicated effort, it has become harder and harder for Leo to bite and swallow well recently.
Time for him to eat has taken longer and longer from 30 minutes to an hour or more per meal now.
He loses weight significantly when he catches cold because he cannot swallow food well due to sore throat.
As a result, his weight has not changed much since 3 years ago.

We, as Japanese parents, think that food is the most important culture in Japan.
So we kept feeding him healthy, nutritious food specially cooked for him because he loved eating so much.
But now it is a huge struggle and stress for both Leo and my wife lately and they are sometimes in tears while eating.

So it was about time for him to have the surgery. For good for both Leo and my wife.

We still keep feeding him through his mouth, but we now have an alternative route to provide enough nutritions for him.
The school nurse or aid can feed him through the tube at school, so he can rely more on people other than us.
As he grow up, he needs to be more independent and rely on the welfare system in any country.

Anyway, now it's done. We are hoping that there will be no reaction from the G-tube placement.

And finally Sena.

We had a nice date this morning while Leo was going through the surgery.
Thank you very much for being such a patient sister!



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From San Diego, CA. Topics on my son with ataxic CP, US-Japan comparison on physically-challenged children, and just some tweets from life. Comments welcome.



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