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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.

IMG_20170629_Leo_After_Surgery.jpg

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.
Everyday...

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!

IMG_20170629_Leo_Sena_After_Surgery.jpg

IMG_20170629_Sena_Chichi_Cardiff.jpg

Muscle biopsy & lumbar puncture


Edit Category 病院 (Hospital)
Waiting for Leo to wake up from anesthesia. He had muscle biopsy for deep testing mitochondria, and also lumbar puncture to examine and compare cerebro-spinal fluid 3 years ago. He did well. Yes, he did well. Hope that today is the last surgery for diagnostic pur'ose.


24 hr EEG Test


Edit Category 病院 (Hospital)
Leo is sleeping right now next to me.
And I am writing this post from the hospital room.
Yes. We are staying tonight for 24 hour EEG test.



He has already done two regular EEG with 20-40 minutes.
The results were all normal.
But according to this article, those short EEG can capture only 37% of the first spike of epilepsy patients.
That percentage goes up to 89% with 24 hour EEG.
Leo has never had a seizure, but we would like to see if something bad is happening or not in his brain activity.

And of course, Leo did not like those electrodes put over his head. Well, who like them ?


Video monitoring is being done at the same time to analyze particular physical activities and brain activity.


Leo did not like it at first, but once the TV is on, he seemed very cozy and happy.


So let us hope that we find something new there to explain his symptoms.


Levodopa started


Edit Category 病院 (Hospital)
just as a record. levodopa medication started yesterday. His body was a bit lower tone yesterday. Today the same. a bit lower tone. The hip joints felt a bit tighter too.


MRI と玉〇手術


Edit Category 病院 (Hospital)
今日はMRIと左の玉〇ちゃんを袋に戻す手術の日。



で、病院から書いてる。

今、Leoに吸引麻酔をかけたところ。

前回もそうだったけど、これが結構つらい。

ずっとハグしてあげた。

目で、パパ怖いよー、いやだよーって言ってた。

Leoの目が涙で一杯だった。

握力のない手で、ずっと強く握り返してきた。

パパ、こわいよー、助けて~って言ってた・・・

そして、遠くにいってしまった。

麻酔だから起きるのは分かっているけど、病院でこの別れの瞬間が、なんとなく嫌で、考えたくもない不安に駆られる。

また筋肉の生体検査の時もこれかー・・・

なるべく全身麻酔はさせたくないけど、原因が分からない今は、どうしても・・・


Leo、

パパ正しいことしてるかな?

こんなにつらい想いばかりさせて・・・

何か間違ってないかな?

何もみつけられないんだ・・・



ただただ、無力感で一杯だ・・・

パパ、もうちょっと強くならなきゃダメだね・・・

こんなにLeo が頑張ってるんだから・・・












 
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プロフィール (Profile)
カリフォルニア・サンディエゴ郊外在住。失調症の息子のことを中心に、日米の障害児事情の比較や、ふと思ったことなどを書いてます。コメント、TBフリーです。

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.

leosena

Author:leosena
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