Update on my son


Completely off the Topic of Tea

Update on my son

Postby auhckw » Apr 27th, '11, 21:14

Hi,

Been away till today. Here are some updates.

Life has changed since the last 1 month+ this happened.

I have been sleeping in the hospital for nearly 26 days. Been into ICU, HDU and Ward. Changed 2 hospitals. Been emotional, fear, sad, tears, etc.

Anyway, my son is now back at home. His condition is stabilized. But damage is already done.

Certain part of his brain has been damaged. It is ANEC, but unknown to what virus/bacteria that triggers it. Blood test came negative for Influenza A, B and H1N1. Doctor cannot explain how he got it. It can be from anywhere, anytime and anything. It is just unfortunately he is wrong place wrong time and got exposed it.

At the moment, his brain has caused him to have Dystonia (http://en.wikipedia.org/wiki/Dystonia). He is either sleeping soundly, staring blanks or screaming in pain due to stiffness/cramps at both legs and hands. He is awake but not fully conscious. He cannot respond to things. A lot of suffering for him.

He is not able to eat/drink through mouth. He cannot swallow his own saliva either. So right now, we are feeding him milk through tube.

Since he is back home, we can see his condition are improving. Not by big improvement, but small small improvements. Doctor said on the bright side, he is still small and there are some chance he may improve, but doctor said we have to be prepared that it may not.

We are not losing hope. We are still keeping faith. Life is tough, but if this is what god has decided for us... we will go through this test.
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Re: Update on my son

Postby Chip » Apr 27th, '11, 21:18

Thank you for updating his condition for us. I am sure we all wish the report was more positive. You and your family will continue to be in our thoughts.

Hopefully the home environment will help!
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Re: Update on my son

Postby debunix » Apr 27th, '11, 21:54

Thank you for the update. You have been in my thoughts. Wishing his pain, and yours, eases with time.
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Re: Update on my son

Postby AdamMY » Apr 27th, '11, 22:07

So sorry to hear this Auhckw, and I wish the best for your son, and hope his condition improves.
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Re: Update on my son

Postby tortoise » Apr 28th, '11, 08:37

I want to express my deepest sympathy for you and your family. I cannot imagine the kind of anxiety you have been living with and the uncertainty...

I hope that your son recovers to the fullest extent that he can and that your love and wisdom will continue to guide you through this very difficult experience.

Very Best to you and your family.
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Re: Update on my son

Postby iannon » Apr 28th, '11, 09:05

Auhckw,
Unfortunately I actually CAN imagine what you are going through..being the parent of a child that had severe Brain issues. I know how I felt anyway. I also feel so terrible for your pregnant wife..the stress of this has got to be extreme for her especially going thru this while getting ready for another little Auhckw..
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Re: Update on my son

Postby karmaplace » Apr 28th, '11, 12:27

I hope that his condition improves soon, and I hope that you and your wife continue to keep strong. My thoughts and sympathy are with you and your family.
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Re: Update on my son

Postby Nenugal » Apr 28th, '11, 12:42

Sorry to hear that... Thanks for the update, I was just recently thinking and wondering how it was going with you and your son before you sent the message. I'll join the others in expressing my sympathy for you and the rest of the family, and continue to hope and pray for improvement.
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