Sunday, May 25, 2008
So Much To Report
Alec has really been through so much this past month. Well we started hyperbaric treatments and after 4 treatments on Mother's Day, May 11th as we were wondering through the mall in Smithtown picking out some baseball gear from Kevin Alec just happened to have taken his hat off to adjust it. Weird I thought so I peeked around at the back of his head and he had a huge hematoma protruding right along his center incision from his resection and decompression.
We dropped everything and rushed him to Stony Brook, it was the closest hospital. I ran into the ER with him and we were in a private room in minutes and a ct scan was being ordered. He wasn't in any immediate pain then but did start to complain about a headache. We got into the ct room where I met my friends brother Chris for the first time who was our tech. In any case, we got Alec on the table and was trying to position him and he screamed like no tomorrow.
We were taken back to the er waiting room and neruo surgery was contacted. I was holding him in my arms and the were connecting all his leads and he just passed out. He went from screaming to sleeping and lead weight in minutes. Mark and I were trying to wake him up and he wouldn't wake up. His respiratory rate dropped and they have to intabate him right then. He had stopped breathing and was solely on a respirator.
He was in the OR in about an hour. This one idiot tried telling us it was tumor. Dr. Gutman came in and said it was a hemorrhage.
Alec was taken into the or stat and the blood clots were removed and blood vessels tied up. He came out of the o.r. breathing on his own, which was the biggest concern.
The next day we were told that the shunt has turned against him and was draining to much and was causing the dura to separate from the brain/ skull region and was pressing into the brainstem as he was bleeding on the outside.
We headed back to the o.r. again because the ct scan revealed he was still bleeding. More clots removed, shunt revised with a programmable one and burr holes drilled in his skull to sew up the dura.
Alec's right side had been completely effected. He had strength but a hard time making the brain and movement connection. He is unable to stand on his feet flat, he pigeon toes his right leg, of course minimal pressure is put on his legs because he is still unable to walk.
Released from the hospital and a couple of days later fever, vomit and headache complaints. Back to ER, now meanwhile he finally was weaned off the decadrone, so of course he was given a stress dose of it. Chest x-ray showed something but nobody seemed able to give us a straight yes or no pneumonia. I noticed that his eating habits had changed everytime he was eating he would cough. He couldn't so much as take his medicine through a syringe without me physically coaching his lips through.
Speech came up and took him down for a barren and swallow test. As it turns out he is aspirating. Meaning food and drinks are going into his lungs instead of his esophagus and also up his nose cavity. They stopped the test immediately and put him on NPO and tube feeds only. He is drooling profusely and aspirating what saliva does go down.
Friday morning more changes occurred with is eyes, they started moving back and forth very quickly in sink like windsheild wipers and his speech declined even more. Now at this point I am having a hard time understanding him. A ctscan was ordered and there is fluid in the right hemisphere of the cerebellum. There was some concern of a stroke considering the new symptoms. We were moved from the general hospital floor to PICU and an MRI and MRA was ordered.
Good News, stroke ruled out, radiation necrosis is once again causing him problems, it's pushing on to the brain stem. We were told that there is nothing that can be done about it and as of yesterday neurosurgery at Stony Brook cleared us to leave, now I wasn't up there that morning Mark stayed the night and spoke to the Dr. when I got up there and saw what condition he was in, I was very uneasy about taking him home.
We had him transferred to Schneider because we felt like Stony Brok was like well thats it, it is what it is. So upon arriving at Schneider we were set up in Med 4 and quickly moved down to PICU because he was sleeping so much and his neurological state had changed and declined so much in the past 24 hours.
A ct scan was done and showed some swelling but nothing alarming, that alarming part was when they did the x-ray to lower his shunt we found that his shunt is set at 30 instead of 180. Besides this shunt being a royal pain in the a_ _ because we constantly have to take x-rays to see if it's in position, now it might even be malfunctioning. They tapped his shunt and drew out csf fluid to check for white blood cells and protein to check for infection. But after they took 6cc he seemed to have woken up a bit.
I don't know we are at a stand still right now and again with no answers.
We were also told that there is some concern that there might be tumor within the necrosis considering how bad he has it. I was also told that to remove the necrosis was not really an option.
Well this is where I must leave you, I am exhausted and need to get some shut eye for tomorrow.
Thank you Margie at Center Moriches Library for the books, I am still reading them, I had a 911 call to the library to self educate myself on what the heck is going on. And thank you to our friends and family for being there when we really did and do need you.
xoxox
Amy
We dropped everything and rushed him to Stony Brook, it was the closest hospital. I ran into the ER with him and we were in a private room in minutes and a ct scan was being ordered. He wasn't in any immediate pain then but did start to complain about a headache. We got into the ct room where I met my friends brother Chris for the first time who was our tech. In any case, we got Alec on the table and was trying to position him and he screamed like no tomorrow.
We were taken back to the er waiting room and neruo surgery was contacted. I was holding him in my arms and the were connecting all his leads and he just passed out. He went from screaming to sleeping and lead weight in minutes. Mark and I were trying to wake him up and he wouldn't wake up. His respiratory rate dropped and they have to intabate him right then. He had stopped breathing and was solely on a respirator.
He was in the OR in about an hour. This one idiot tried telling us it was tumor. Dr. Gutman came in and said it was a hemorrhage.
Alec was taken into the or stat and the blood clots were removed and blood vessels tied up. He came out of the o.r. breathing on his own, which was the biggest concern.
The next day we were told that the shunt has turned against him and was draining to much and was causing the dura to separate from the brain/ skull region and was pressing into the brainstem as he was bleeding on the outside.
We headed back to the o.r. again because the ct scan revealed he was still bleeding. More clots removed, shunt revised with a programmable one and burr holes drilled in his skull to sew up the dura.
Alec's right side had been completely effected. He had strength but a hard time making the brain and movement connection. He is unable to stand on his feet flat, he pigeon toes his right leg, of course minimal pressure is put on his legs because he is still unable to walk.
Released from the hospital and a couple of days later fever, vomit and headache complaints. Back to ER, now meanwhile he finally was weaned off the decadrone, so of course he was given a stress dose of it. Chest x-ray showed something but nobody seemed able to give us a straight yes or no pneumonia. I noticed that his eating habits had changed everytime he was eating he would cough. He couldn't so much as take his medicine through a syringe without me physically coaching his lips through.
Speech came up and took him down for a barren and swallow test. As it turns out he is aspirating. Meaning food and drinks are going into his lungs instead of his esophagus and also up his nose cavity. They stopped the test immediately and put him on NPO and tube feeds only. He is drooling profusely and aspirating what saliva does go down.
Friday morning more changes occurred with is eyes, they started moving back and forth very quickly in sink like windsheild wipers and his speech declined even more. Now at this point I am having a hard time understanding him. A ctscan was ordered and there is fluid in the right hemisphere of the cerebellum. There was some concern of a stroke considering the new symptoms. We were moved from the general hospital floor to PICU and an MRI and MRA was ordered.
Good News, stroke ruled out, radiation necrosis is once again causing him problems, it's pushing on to the brain stem. We were told that there is nothing that can be done about it and as of yesterday neurosurgery at Stony Brook cleared us to leave, now I wasn't up there that morning Mark stayed the night and spoke to the Dr. when I got up there and saw what condition he was in, I was very uneasy about taking him home.
We had him transferred to Schneider because we felt like Stony Brok was like well thats it, it is what it is. So upon arriving at Schneider we were set up in Med 4 and quickly moved down to PICU because he was sleeping so much and his neurological state had changed and declined so much in the past 24 hours.
A ct scan was done and showed some swelling but nothing alarming, that alarming part was when they did the x-ray to lower his shunt we found that his shunt is set at 30 instead of 180. Besides this shunt being a royal pain in the a_ _ because we constantly have to take x-rays to see if it's in position, now it might even be malfunctioning. They tapped his shunt and drew out csf fluid to check for white blood cells and protein to check for infection. But after they took 6cc he seemed to have woken up a bit.
I don't know we are at a stand still right now and again with no answers.
We were also told that there is some concern that there might be tumor within the necrosis considering how bad he has it. I was also told that to remove the necrosis was not really an option.
Well this is where I must leave you, I am exhausted and need to get some shut eye for tomorrow.
Thank you Margie at Center Moriches Library for the books, I am still reading them, I had a 911 call to the library to self educate myself on what the heck is going on. And thank you to our friends and family for being there when we really did and do need you.
xoxox
Amy
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