so sorry to hear what you are all going through. I know it is agony. My daughter had 2 surgeries,  a year or so apart. She had a stroke after each surgery. IT was tortuous being in ICU wondering what the outcome would be. She also has a low Factor IX issue. is on meds for stroke and seizure and has TIA's.

After her 2nd surgery, her scar was not healing, was weeping etc. eventually it cleared but it was very stressful. AT one point they were going to do skingrafting.

My daughter just had a recent MRI that says she is stable but she still has hyperventilating, crying and weakness on occasion (like the first day of school) and we are trying to have more testing done. She is doing quite well otherwise, except for these episodes and some involuntary movements which we are still trying to figure out.

I know of another case of Moyamoya in a child, where there was infection and fluid build up and they put in a shunt to drain the fluid.

I vividly recall the ICU days...........and know how stressful it can be. Hopefully they will find some answers to support your son. I'm wishing you all the best though I know that's not much comfort right now.

take care!

Dawn

Wishing your husband good luck with his surgery today. take care and keep us posted!

Dawn

Sorry Donna it has taken me a bit to be back on line.  We have been at TGH the last week.  Matt was just sent home with a pic line and on vancomyacin and another push antibiotic. Plastic surgery assisted Dr. Agazzi in the surgery and they reopened Matt's head and had to clean out the infection and do a wash.  Plastic surgery then stitched him up this time...no staples...  Now his right leg is 3 times the size it should be...had several tests done today for DVT...but they were negative.  This may sound good..except it doesn't answer why his leg is so swollen all the way to his toes that he can barely walk. ;(  Feeling very frustrated.  Anyway...that is our update.  Going to talk to primary tomorrow about what do we do now.  Talk to you soon

Shari