I just checked in today...I am SO truly sorry for what Ryan is going through. It just breaks my heart that he is dealing with this. And please know he is in my prayers as you are too.
I am glad that you and Chuck are dealing with this as the loving parents that Ryan deserves. Sometimes people DO rise to the occasion when we least expect it.
When my younger son was dying...my now xH did not rise to the occasion and thus, he carries that guilt everyday and will till the day he dies. That is a heavy burden. I am proud of how well you're handling this. My best advice is to continue to always take the high road.
Ask his doctors about putting him on a ketotic diet. That can stop seizures sometimes when nothing else does. I don't know if they are set up to do it in the hospital, or if they would object while he is ill, but it really does work for some people.
I appreciate your posts and prayers and I'm listening - keeps me going.
Today I saw a few small signs of progress. He is breathing more on his own and sedation has been reduced. Have not seen any seizures. Some normal reactions to being touched and trying to open his eyes.
Baby steps but in the right direction. I am SO tired.
(((((Barb))))) I have been thinking of your family. Glad to see that there are small steps of progress. Get some rest, Ryan doesn't need you run down. Your all are in my thoughts and prayers.
kat
Me-53(and learning!) S24, S21, D18, D17 Just keep swimming, Just keep swimming. Dory
Ellie...the ketogenic diet helps decrease seizures sometimes but I think they are still trying to figure out WHY Ryan is seizing now (is that right Barb?)
they can't start the diet until they find what has changed his status now...and putting someone in Ryan's state into Ketosis is pretty dangerous
Well there are a couple of things. I think they just want to treat the seizures first then decide why they're happening. But I'm not sure they would consider the diet because Ryan's seizures (for the most part) are lifelong and due to his global brain damage.
Ryan is tube fed so there are limits to what we can feed him.
Ellie - do you know if anyone who is fed by G Tube has been on this diet?
