My gosh you should feel overwhelmed! That's a lot on your plate. Welcome to this wonderful group. Everyone is so helpfull!!  I would be happy to answer any specific questions you have (either online or e-mail), My daughter was diagnosed 8 yrs ago and had her surgery in Boston with Dr. Scott. He was wonderful as was the entire staff. She unfortunatly suffered sever strokes but luckily has not had any since ehr surgery. I'm sure you've been told to keep your son hydrated. Is he taking asprin? We tried to bring plenty of fun things to keep busy like movies, books and music. I stayed in the hospital room with my daughter the entire time. Please ask away if you can think of any questions.
Mary G.
mgrace5@nycap.rr.com

Moya_mom,
Wow - you do have a lot to deal with right now.  My daughter had surgery in Texas and we live in Kansas.  It was flu season, so even though they said it was okay to fly we drove (plus the $ to fly).  Anyway, we broke the drive into two days on the way down as we didn't want to wear her out.  Also, after surgery our surgeon had us stay in town 3 - 4 days AFTER released from hospital before we drove back.  (we had friends we could stay with) She did fine on the drive.  The second surgery was the next month and we flew home that time (dad drove us down and didn't stay the whole time).  I think I preferred driving actually!  I stayed in her room the whole time both times - they let us skip ICU and go to a regular room.  She did have a stroke prior to diagnosis, but no strokes after surgery.  Lina had a lot of swelling, but not much pain amazingly enough.  The first couple of days were the worst, after that she was ready to play.  We walked a lot around the hospital - even outside a couple of times.   Best wishes for both of your kids. 
Jody

I'm glad your getting some helpful information. I can tell you about our experience but of course not all kids have the same experience. Kathleen had swelling after the surgery but it went down rather quickly. She had a dressing over the incision,the stitches were disolveable so we didn't need to get them removed. They shaved only a strip of hair and it grew back quickly. We did have a problem removing the glue from the EEG. BCH was great about pain managment and keeping ahead of the pain. It was only a coupld days before she was on just tylenol. There shouldn't be any neurological deficits after surgery unless they ahve TIA's or strokes.Kathleen had a severe stroke after the first surgery but this was due to the fact that she was very unstable at the time of her surgery. She was experiencing strokes that were getting closer together and more severe. She had one the day before surgery. Most kids are up and going very quickly and home in less than a week. BCH had chairs that folded out similar to a bed in the rooms. They also ahve parent sleeping rooms that you can put in for ahead of time (there can be a waiting list). you can probably get a lot of information on their website too. I stayed with Kathleen until she was put under. There was never a minute that I wasn't allowd to be right by her side. I'm not sure about the wireless internet. They had computers for patient use. AS for entertainment... I brought movies (plus they had a lot of them there to use) music, books, whatever your son enjoys. maybe magazines, puzzle books,  Ipod, handheld games, etc.  I don't believe there are activity restriction assuming there are no complications. We were told to not let her hyperventilate.  Many patients fly both before and after surgery. They have tioletries but he may want some of his own that he's used to using (and for yourself). Kathleen didn't really need clothes just something to wear home.She was fine wearing the hospital gown(she was only 5 at the time)Your son may want his own PJ's to wear. I brought clothes for myself and my hysband. You can do laundry there if need be. We were there for almost 2 weeks so my husband did laundry once. Kathleen is still on asprin for the rest of her life we've been told. I'm not sure what the follow up is now we went back for 2 follow up visits and now only follow up with our local neurologist unless there's a problem. Kathleen has not had any more strokes or TIA's since the surgery. What we deal with mostly are the affects of ehr strokes. I hope I answered your questions. Let me know if you have any more. I can safely say that your son will be in the best of hands at BCH. The staff there are the best and very much on top of everything there is to know about moyamoya. Please keep us posted and ask away any questions you have.
Mary G.

Just want to add that the sunglasses can't put any pressure on the incision.  May some of those big ones that people wear after they get their eyes dilated.  They might not fit tightly on the face.

Hi good luck to your son with his surgery !! My son who was 12 when we had surgery , like yours also just had headaches and pain around his eye before we got diagonised , he was in ccu for 2 days then moved to regular neuro ward , the swelling around his eye scared the beejeebers out of me , they may have told me about it but it slipped my mind !! Just dont let it freak you out , it is normal , Josh had his surgery done at sick kids hospital in Toronto , Ontario , they admitted him the night b4 surgery to hydrate him , once he went to neuro ward the lights bothered him and noise , , he did experience a fair amount of pain but they kept him comfortable , he really wasnt up to much convo and or visitors , definetly no tv , suprisingly he was more alert right after surgery in ccu , and asked for a tv to watch the news , lol , i think once the good pain meds wore off , he had less energy , he also had some nausea when they started getting him mobile , but from what i have read each kid is different , he was a little unsteady on his feet  with stairs and stuff and did require some physio,if i can answer any other questions or if your son wants to ask my son some ?? please let me know , Joshs 1 year anniversary surgery is on nov 24 , and it is great to have my son not suffering the headaches and stuff any more, and back to his usual self !!

Thank you all for the wonderful information.  We have been on such a roller coaster ride with the two boys needing so much at the same time.  Nathan will have his angiogram today.  I am sure he is so ready to get some information that will tell us the next step from here.  Our insurance has denied our wish to go to Boston with Dr Scott to handle the care of our son.  We have been sent to a Dr Stephanie Greene at the local Children's Hospital here.  She seem to be very confident in her ability to care for Nathan.  We will see what the angio shows and maybe get Dr Scott to give us a second opinion on those results.  Our 3 year old will have his heart surgery on the 18th now as their was a scheduling conflict.  I am sick with worry for my boys.  I don't think I will ever take the health of a child for granted again.  Nor will I ever not take the time to pray with my heart for a sick child and their families as I have done for all of you who have taken the time to help my family along the journey.  I will post more as we know more. 
Colleen

Nathan did really well with his angio.  They have put him on the schedule for the pial synangiosis surgery for tomorrow.  We are a little rattled here trying to get everything ready to go.  He has 4 brothers and one sister.  We are staying positive that he will get through this surgery without complications and come back home safe and healthy.  I have read all your advice and suggestions.  Thank you for they have helped me to prepare myself and him for the next couple of weeks.  I will post again after the surgery.  Glad to hear your doing so well after a year.  That puts a big smile on our faces here.

So glad to hear surgery went well. Thoughts and prayers for you and your family.
Pam

So glad the sugery went well!!!  I'm sure he will be strong in his recovery   I hope and pray all goes well with you and both your boys!  I can't imagine how hard it is watching them in pain.  You are doing an amazing job at taking care of them I'm sure.