Sorry for not sending out an email update about the surgery for so long. It turns out I can access Facebook at the hospital very easily but not email. Over five hours in the OR, but he was talking and moving pretty quickly in the recovery room.The surgery was successful in removing most of the scar tissue that had completely sealed his fourth ventricle shut, but they could not put the shunt in the ventricle as we had hoped. His fourth ventricle had a lot of tumor in it so it would more than likely just clog the shunt (drain) if they put it in. They did make a tube out of a dissolvable gel material in hopes that it would keep an open pathway for the ventricle to drain. It may or may not work, or may only work for a period of time. The pathologist confirmed that the tissue sample was actual tumor but we will not have final results likely for ten days, and this is no surprise because we know that Gray's tumor is like a coating throughout his brain and spine. The first few days were very worrisome because Gray was not bouncing back like he has after his previous surgeries. He would not eat or drink, try and get up or move around, and his visual processing seemed to be very off. He had no interest in movies or cartoons, or any of the usual stuff that he enjoys even if only for a few minutes. His sodium levels seemed to remain low despite supplementation and then he started with a fever. That required many tests, Chest X-ray, Head CT, and a sampling of Cerebral Spinal Fluid to rule out bacterial growth. He had a couple of days of antibiotics and seemed to have kicked whatever infection may have been brewing. The first week we were on the Surgical floor which had a variety of surgical recovery patients and was very noisy and chaotic. Gray does not do well with noise under good circumstances so this was very difficult for all of us to deal with, and sharing a room with two babies for the first three days did not start things out right. The emotional trauma seems to be the toughest for him to deal with at this time. He has constant nightmares when trying to sleep and so he seems pretty afraid to go to sleep at night and his emotions are very volatile. You just never know how the brain will respond in these types of surgeries, swelling and movement play a big part of mood, coordination and function. It will probably take many weeks or even months to know the effectiveness of reducing pain and figure out all the actual changes in him, both good and bad. Two days ago we transferred to the In Patient Rehab Unit, in hopes of getting him several hours a day of therapy to help get him back on his feet. His fine motor skills are still pretty good but his legs are still very wobbly and vision seem to be off. It is a challenge to try and walk, even with me doing all the work, because his legs are all over the place. His head and neck are very stiff which does not help and he is very afraid of hurting himself. Gray has a long road to recovery ahead of him, but I am sure he will be back in action "Gray Style" as usual. Thanks to all who made a special trip to Children's Hospital LA to donate blood on Grayson's behalf. He was borderline on requiring a transfusion, but his blood counts recuperated quickly enough so all the donations would be successful in helping another child. As always, I saved the best for last. We are so fortunate to have such a great support system. I apologize to all the people who have offered to come by and visit, bring food, etc. that I have not had time to respond to. My besties, Amy and Diane, came into town before the surgery and did not go home until they had to return to their own kids and work. My family has taken turns round the clock to bring us anything we may need and allow me to meet with the teams of Doctors, and take an occasional shower. This has been an exhausting, emotionally and physically, hospital stay. Not just here, but for our support team that stayed at the house to make the rounds. The hospital security is tight here so we can only have two people bedside at a time, which is usually me and one visitor. And many thanks to Annie Banannie, Gray's famous Clown Mentor, who has kept us all laughing. Even when people were passing out while donating blood on Grayson's behalf.... :o)...always an adventure of some sort. Grayson loves to get mail, so we are welcoming cards and letters. xoxo Michelle and Gray Grayson Arroyo-Smiley 3325 Canton Way
Studio City, CA 91604 | 
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