01-10-2009, 10:26 PM
I am a grandmother. My grandson's name is Chase. He is 5 months old. His port wine stain is over all the top of his head and his whole face to the chin. So far he has had surgery to relieve the pressure on his eyes. They put tubes in the back of his eyes to re-route the fluid. He has had radiation through the bones on the side of his face to try and dry the fluid which caused detached retinas. Since this operation, one retina reattached 100% and the other was at 80% but they said it could take up to 9 months to reattach. They live 50 minutes from Cleveland Clinic. Three times he as been rushed to the hospital and then transported to the Cleveland Clinic because of seizures. He has been in the clinic for 8 days each time. The poor little guy has been put under sedation so many times. He has had 45 minute seizures, some half hour seizures that began on one side of the brain and now are bi-lateral. I live in western PA and so does the other grandmother, so we go out and take care of our childrens other two boys who are 4 and 2 1/2. My question is is there anything I can do to help with my grandson. We all deal with an illness in different ways. I'd like to know what to expect. The last time Chase was in the hospital they suggested a permanent port. He was being pricked so many times, the parents said no when they heard what could go wrong. I would really like help in understanding the syndrome. I also would appreciate any way you could help me. I know there's no cure. But I think talking with others who are going through this would be very helpful.