Ethan in hospital...

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Rhea - our prayers continue with you, Ethan, and the reat of your family every day.
 
Many hugs and prayers are on their way, Rhea. I hope that there is some improvement........:e:
 
Birdbomb said:
Poor little thing, bless his little heart. Rhea I am so sorry he is not responding. Everyone here at CWE has him and your family in our thoughts and prayers. I wish I knew magic words to give you strength and comfort but you know there is a lot of support for you here. Take care of yourself too. ((((hugs))))
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Birdbomb expressed the way we all feel about Ethan and you. (((hUGS)))
 
It looks like she hasn't been online since 7-14. I hope Ethan is okay.
 
I've been thinking about little Ethan when we were away for a 2 weeks holiday in France. No update on him from Rhea since July 15th, I'm worried...
 
I'm still trying to catch up with everything.
After 5 horrible, loooong weeks, Ethan is finally home!!! He got out sunday, and I think he missed his little bed! He snuggled right in.
We almost lost him several times. His blood pres. was sky high, fluid in lungs and brain, heart enlarged. I think every kind of doctor there is was working on him. He came home with 10 (yes 10) different medicines!! The good thing is... NO MORE SHOTS!!!! Sunday was his last one. He is now on sabril (vigabatin?) We have only seen one mild seizure since he's been home. He went into status and was hard to come out of. He also came home with oxygen, O2 monitor, vitals monitor, and a suction machine.
He's rally tired but can't seem to sleep more than a couple hours at a time. Don't know why, but I hope he gets back on schedule soon. Tonight he is at a sleep study where they specialize in pediatrics. Hopefully, that will tell us something.
I do know he has the best doctor in the world!! He was leaving for a cruise soon after Ethan was admitted. Somewhere- in the middle of an ocean, his dr. was hooked up to the video EEG they were doing at the hospital. He gave my daughter his personal cell phone # so she could call him if she needed anything. He checked in at least once a day, and technically Ethan wasn't even his patient then. He is my doctor and my daughter's doctor too.
Still no word on the genetic part of it. The only thing we know is that it's NOT spinal muscular atrophy. Which is good. That was the death sentence if he had that. They thought he did and took them 3 weeks to grow enough cells to test. Still no closer to finding out what it actually is, but the genetic team is interested enough in our family to try harder than usual. Don't know if that's a good thing or not.
Ethan is all smiles and is learning to communicate with us. We can usually tell what he wants. My husband was sitting on the couch, and Ethan kept trying to throw his head back that way and fussing. Soon as grandad took him, he was all smiles and grins!! He's trying so hard to make his hands do what he wants. He has such low muscle tone, and needs a lot of therapy. We hope to start that back soon.
I thank you all for your support and prayers. When Ethan was transferred to Fairfax, he was almost dead. He had even "lost control" of his bowels and that is not good. I don't know what any of us would do without that little guy. By the way, he lost a lot of fluid and weight. He's now a normal sized baby. Much easier to handle!! He even fits in his car seat again.
I'll try harder to keep posted. I'm sure everyone understands, we've all been in situations that you forget everything except what is focused on. Hope everyone else is doing well, I'll try to catch up with the news maybe tomorrow.
 
Thanks for the update Rhea, we've all had our fingers-crossed for Ethan. It's so great that he's home and that things are looking up!
 
I am so glad that Ethan is home and all right again. You and him have gone through so much. Your focus was on Ethan, where it should be. Tell Ethan we love him. We love you, too Rhea.

(((HUGS)))
 
Thanx for your update Rhea, I'm so relieved to read this good news about Ethan. Finally home.

I know several kids who do very well on Sabril, in Holland Sabril is the first choice med for Infantile spasms before ACTH.
You can find more about it here http://infantilespasms.com/forum/

My very best wishes to Ethan, to you and your family!
 
I'm so glad to see a positive update, I think about you guys often. Give that lil sweetie a kiss on the cheek for me. :)
 
Way to go, Ethan! What a little fighter.

I am so happy for all of you.
 
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