Welcome to the Family! your questions...

How can he be a functioning alost 2 year old with almost no blood getting to his brain? Humans are amazing creatures! There was a story of a small child who developed with only one hemisphere of her brain, and she was fully functional. Childern expessaly are able to use other parts of their brains for things that should only be known in a certian spot of the brain. This is why children can learn a second language easyer then an adult.

Will this affect the surgery? This should not effect the surgery, but it may determin the type of surgery he needs.

What happens post op? He will have to leard new bounderys of what he can or can not do. These are determined by the indivigual person. My limitations are very diffrent form the next person. But for the most part there is not much of a life long restrictions.

How many strokes does he have to have before this is over? If you have a good nuologest who knows about MM and knows about the many types of surgery. And who can diagnose what surgery would be best. Dr. Stineberg of Stanford has a great!  He is the best in the USA. but there are others that might be closer to you that are on this sight under "Surgens with bypass experence". He might be one who never has a stroke!! But proper and early diagnosis is STRONGLY recomended.

I hope I have answered your questions. I will pray for you and your son. Please keep us all updated!!
Becky

Hi Taly.  My 14 yr. old daughter had almost no blood flow to the right side of her brain and the left side carotid was also closing off.  She was totally normal.  It took a LOT of doctor visits and several years for me to get a doctor to do an MRI because she passed all of the in office neurological testing and seemed normal except for a learning problem.  She had both surgeries in June 2008 with Dr. Steinberg and is doing just fine.  We went for her six month check up but I still haven't received results from anything as of yet.  I think I'm going to email them tonight.    I did see two MRI's to compare from before the surgery and after the surgery and it is very frightening and amazing how the brain can function like that!!!

You are on the right track now!!!  Let us know how things are going.    -Audrey

Hang in there Taly.

Kids really know how to throw us curve balls, don't they? Beginning of March isn't too far off. Make that second appointment and before you know it you'll be back.

Hope Ethan feels better soon. Matt, my three year old son, also suffers from croupe. Quite frightening when they have a proper attack, isn't it?

Good luck
Mark

Great. Ethan and you are very definately in my thoughts.

Mark

My thoughts and prayers will definitely be with you and Ethan, Taly.  It's a difficult day, especially for you, but you'll all get through it.  Please keep us posted with how things went when you are able.

Jill

Just wanted to update everything.

Ethan is doing great!! The surgeon said everything couldnt have went smoother (only took 2-3 hours!).  We got to leave the PICU today & he is awake & eating cheetos.  The incesion is a little bigger than they had told us, but thats not so bad. The Drs & nurses are all suprised that he hasnt swollen that badly (I think its pretty bad, but i dont see it all the time either) Hopefully we can go home Tuesday-ish.

Thanks so much for your words of encouragement. They have REALLY helped me get through all this. You are all a wonderful group of people!!!    


Taly

Great news. Been thinking about Ethan, thanks for the update.

Mark (Luca's Dad)

I am so glad for you all.

I keep you in my thoughts and heart.

Hope the next surgery, and recovery, goes well too --


Linda (LA)

Sorry I havent put an update on here lately, its been a LONG week.

Ethan had Surgery #2 on 3-17. It went GREAT! We were in the hospital less time than we were with #1. He did have to have 1 unit of blood this time because he was anemic. We were discharged from the hospital around 5 or 6 pm Thursday 3-19. We decied to stay in Oklahoma City over night instead of getting home at 11 pm. We got to the house around 3pm Friday & were back in the ER in my home town at 11 PM. He had developed a fever of 102 and was throwing up. So we were medi-flighted back to OKC. We got to the Childrens Hospital around 3:30 am and we have been here ever since.  The Drs areant  sure whats going on, at first they thought Menigitis, after they ruled it out they thought possible pneumonia, but thats not it either. Luckly he hasnt had any major stokes or anything, but i think he has had a TIA or 2 since we've been here. But the surgeon said that if he did it was normal this soon after surgery and for him being dehydrated. They couldnt get an IV started for the first 2 days we were here and were talking about puting in a central line, but an anestesia Dr FINALLY got one. He has been improving daily, getting up and walking arond, and wanting to play more. Yesterday was his 2nd Birthday & he seemed to have a good time at his "party". When the surgeons came in this morning they said we could go home as soon as he is eating and drinking better. (I think he had maybe 20oz in 24 hours & thats not near enough.) Hopefully he will feel better today & want to eat & drink so we can go home!

I think thats everything....lol....like I said its been a LONG week!  

Thanks so much for everyones concern, thought & kind words. They have really helped & I REALLY appreciate it!

Taly (Ethan's Mom)

Taly~

Major DITTO on the roller coaster ride!

Wishing Ethan and your family a Happy Second birthday!

Love and more love,

Linda (LA)

Taly,

I hope everything is going well with Ethan, I'm praying for him.

Paula

Paula,  I hear Dr Scott is very good.  I am sure everything will be fine.  It is very scary when your child is so sick with a rare disease.  We will keep you in our prayers.

Donna