There comes a point where we knew that Alvin would start to understand that he was different. Before the hydrocephalus surgeries his differences were harder to point out. He spoke a little differently and had different social interactions. His motor skills were choppy but for the most part it was hard for others, especially kids his age to tell what was going on. Most kids just thought he was funny or odd, but it never was really a factor.
Lately all that has changed. It occured to me during this hospital stay that Alvin is starting to understand that he is different and that the hospital is now going to be part of his life.
This all started when we were in the playroom. There was a doctor's table with commonly used items such as a thermometer, pulse oxygen monitor, and stethoscope. While we were in the play room Alvin had a lot of fun showing me how these were all used telling me things about them. While I was impressed with his understanding it was also hard to take.
During the stay last week, from the first clinic visit all the way through discharge Alvin showed me that he does understand what is going on. He knows something is wrong with his head. He knows that the doctors are there to help but they do things that hurt sometimes and it can be scary.
When we got home I basically forgot about some of it until Sunday when we went to a local playground to get some much needed outside time.During our time there I noticed something very specific. When Alvin was playing with the other kids and his baseball cap was on covering his incision he was treated as normal as ever. He at one point took his hat off and went back to playing. The same kids that were just playing with him saw his head and made comments and ran away. These exact same kids started treating him like there was something wrong with him. Alvin noticed this and once again did something that I admire. He calmly came to me and said he wanted to go home so I got Elliot and we headed home.
Once again that was a kick in the gut. I see him deal with it so well, but later the emotional meltdown came out. He asked to be held and carried. He asked me to not let go.
Alvin knows that he is different now not just because of his mannerisms but because of the large "C' on his head. He knows at home he is treated just like Elliot, but for some reason the other kids don't see him the same way. They see him as odd or gross and avoid him which is so different because at home Elliot seeks him out and could care less that he acts weird or has stuff on his head.
We are struggling with this as a whole. So far the only thing we can do right now is tell him that some kids are just mean and don't understand. His family understands him and right now that's all that matters. Right now all we can do is just work through it with him. He really is handling it all very well for his age and we have been so proud of him. He is starting to better understand his conditions though which at times can be heartbreaking. We had hoped he could stay blissfully less aware for a while longer but the day has come and now all we can do is support him through it.
Showing posts with label neurosurgery. Show all posts
Showing posts with label neurosurgery. Show all posts
Thursday, June 14, 2012
Friday, April 20, 2012
MRI results, cyst and hydrocephalus oh my!!
So while I've been all over twitter and facebook about this I figured I would give the rundown of what in the world just happened. The past 72 hours or so have been crazy and while we are out of the woods for the most part now its been a scary ride.
About 3 weeks ago Alvin underwent an MRI and EEG to see if they could determine what if anything was causing his seizures. The procedure went well overall and we were told to just follow up with the neurologist at our scheduled appointment.
So on Wednesday we met with the neurologist. The EEG showed nothing much, but the MRI showed something that as he said was concerning, but not too bad. It showed that his left, right and 4 ventricles in his brain were enlarged and that he had a cyst in his brain. We were told that we would need to followup with the neurosurgon and it would probably take about 3 weeks. He wasn't overlly concerned so we didn't worry. I called the same day and they said they would be contacting me the next day to get his appointment scheduled. We in turn told all of our family what we knew, but not to worry.
On Thursday I was schedule for a leadership training class. I knew to expect a phone call but wasn't overally concerned. The call I got at about 9:30 though was not what I expected. The nurse I spoke to said they wanted to see him much sooner than later. She then told me the MRI scans showed hydrocephalus. Now I'm in shock. I wasn't too terribly sure what it was, other than water on the brain, but I knew it wasn't good. The nurse told us that the enlarged ventricles he had were hydrocephalus.
Quick note, if you haven't heard of it here is the definition from Seattle Children's Hospital Neurosurgery page:
"Hydrocephalus (pronounced hi-dro-SEF-a-lus) is a potentially harmful build up of cerebrospinal fluid (CSF) in parts of the brain.Hydrocephalus literally means water (hydro) in the head (cephalus). It is sometimes called water on the brain. The "water" is actually cerebrospinal fluid. Cerebrospinal fluid is normally present in areas both inside and outside the brain. Common causes of CSF blockage, which causes hydrocephalus Children with hydrocephalus have too much cerebrospinal fluid in the areas of the brain called ventricles. The ventricles store and circulate cerebrospinal fluid. Children with hydrocephalus may also have extra fluid in spaces between the brain and the skull called the subarachnoid spaces. When a child’s cerebrospinal fluid cannot flow or be reabsorbed properly, it builds up. This makes the ventricles bigger and puts pressure on the tissues of the brain."
So once I hear the hydrocephalus issue we start getting more information. The surgeon wants to meet with us at 8:30 the next morning to go over our options and possibly do surgery the same day. Alvin's case I am told is more urgent than originally thought. The nurse also said she wanted to get him an eye exam as well to be sure that he was indeed seeing ok and that his optic nerves were not being compressed.
So with that the chaos starts. I manage to get through the rest of my training class all the while texting and calling family members with updates on what is going on. At this point we have no idea what will happen the next day other than he might have emergency surgery.
At 8:30 we arrived at Seattle Children's Hospital today and began a whirwind of activity. We met with the neurosurgon and were told that his was a moderatly bad condition with the hydrocephalus and that the cyst was inoperable. The cyst itself is in a bad place and they can't reach it without doing more damage. They hyrocephalus though could have something done to correct it. We had two options. They could put in a shunt that would reroute spinal fluid from his brain to his belly thus elliviating the pressure. The second option that he was a conditate for that not all kids are was called an ETV or Endoscopic third ventriculostomy. In this procedure they literally use a tiny camera inserted in his brain to guide an instrument to make an extra hole in his brain so that fluid can drain out on its own.
We were given the choice and went with the ETV since it meant no permanent hardware would be left inside him. Then the surgeon left to go start scheduling things and we were sent for an eye exam. About an hour and a half later we were back signing the papers for him to have the surgery and getting him ready.
Below is a video of the procedure itself.
Will went back to the operating room as they put him to sleep and then we all headed to grab some lunch. Luckily a good friend of ours drove 2 hours to stay with us and keep Elliot entertained. Seriously having Chirstall there with all of her experince in that hospital was so nice. We laughed about it all and Elliot of course had fun attempting to charm her! As we finished lunch we got a page to head back down to the ICU. To our suprise after only about an hour the surgery was done and things went great. His pressure inside his head was 17 and normal is nothing more than 15. He now had an extra hole in his head and fluid was starting to drain away and the pressure was also expected to go down.
He had a CT scan and then went to recovery where he started to wake up and ask for me. The staff immediately brought me back and he was doing good just a little nauseated. Soon after they got him up to the Neuro ICU for monitoring and he started to ask to play on the tablet but still sick. He will hopefully be moved out of ICU to a regular room tomorrow and go home late tomorrow or Sunday.
Now at about 9:30 he is resting comfortablly. The last 72 hours or so have been crazy for all of us. I can say the best thing that came out of this was how fast the doctors and staff here reacted. The nurses I saw in neuro recovery and ICU are shocked that the hydrocephalus wasn't caught earlier but since autism signs like speach delay and motor skills problems are also common to hydrocephalus the only real clue without the MRI was his head shape.
I fear that if we had been back in AL this wouldn't have been caught. Once we got here and pushed for a re-evaluation of his condition everything was discovered and we dodged a major bullet. We were able to find things we never knew were there and had honestly more than likely been there since birth. Alvin's chances of recovery are very good right now. We don't expect his autism symptoms to go away completely but there is a chance that the surgery has lessed the pressure on parts of his brain that control things like speech and fine motor skills and those areas could see more improvement.
To all of those who have sent us well wishes thank you so much. I'm sorry we haven't gotten back to every single one but we have seen them and we appreciate it. We are very grateful at the out pouring of support and hopefully here soon I'll get more pictures up
About 3 weeks ago Alvin underwent an MRI and EEG to see if they could determine what if anything was causing his seizures. The procedure went well overall and we were told to just follow up with the neurologist at our scheduled appointment.
So on Wednesday we met with the neurologist. The EEG showed nothing much, but the MRI showed something that as he said was concerning, but not too bad. It showed that his left, right and 4 ventricles in his brain were enlarged and that he had a cyst in his brain. We were told that we would need to followup with the neurosurgon and it would probably take about 3 weeks. He wasn't overlly concerned so we didn't worry. I called the same day and they said they would be contacting me the next day to get his appointment scheduled. We in turn told all of our family what we knew, but not to worry.
On Thursday I was schedule for a leadership training class. I knew to expect a phone call but wasn't overally concerned. The call I got at about 9:30 though was not what I expected. The nurse I spoke to said they wanted to see him much sooner than later. She then told me the MRI scans showed hydrocephalus. Now I'm in shock. I wasn't too terribly sure what it was, other than water on the brain, but I knew it wasn't good. The nurse told us that the enlarged ventricles he had were hydrocephalus.
Quick note, if you haven't heard of it here is the definition from Seattle Children's Hospital Neurosurgery page:
"Hydrocephalus (pronounced hi-dro-SEF-a-lus) is a potentially harmful build up of cerebrospinal fluid (CSF) in parts of the brain.Hydrocephalus literally means water (hydro) in the head (cephalus). It is sometimes called water on the brain. The "water" is actually cerebrospinal fluid. Cerebrospinal fluid is normally present in areas both inside and outside the brain. Common causes of CSF blockage, which causes hydrocephalus Children with hydrocephalus have too much cerebrospinal fluid in the areas of the brain called ventricles. The ventricles store and circulate cerebrospinal fluid. Children with hydrocephalus may also have extra fluid in spaces between the brain and the skull called the subarachnoid spaces. When a child’s cerebrospinal fluid cannot flow or be reabsorbed properly, it builds up. This makes the ventricles bigger and puts pressure on the tissues of the brain."
So once I hear the hydrocephalus issue we start getting more information. The surgeon wants to meet with us at 8:30 the next morning to go over our options and possibly do surgery the same day. Alvin's case I am told is more urgent than originally thought. The nurse also said she wanted to get him an eye exam as well to be sure that he was indeed seeing ok and that his optic nerves were not being compressed.
So with that the chaos starts. I manage to get through the rest of my training class all the while texting and calling family members with updates on what is going on. At this point we have no idea what will happen the next day other than he might have emergency surgery.
At 8:30 we arrived at Seattle Children's Hospital today and began a whirwind of activity. We met with the neurosurgon and were told that his was a moderatly bad condition with the hydrocephalus and that the cyst was inoperable. The cyst itself is in a bad place and they can't reach it without doing more damage. They hyrocephalus though could have something done to correct it. We had two options. They could put in a shunt that would reroute spinal fluid from his brain to his belly thus elliviating the pressure. The second option that he was a conditate for that not all kids are was called an ETV or Endoscopic third ventriculostomy. In this procedure they literally use a tiny camera inserted in his brain to guide an instrument to make an extra hole in his brain so that fluid can drain out on its own.
We were given the choice and went with the ETV since it meant no permanent hardware would be left inside him. Then the surgeon left to go start scheduling things and we were sent for an eye exam. About an hour and a half later we were back signing the papers for him to have the surgery and getting him ready.
Below is a video of the procedure itself.
Will went back to the operating room as they put him to sleep and then we all headed to grab some lunch. Luckily a good friend of ours drove 2 hours to stay with us and keep Elliot entertained. Seriously having Chirstall there with all of her experince in that hospital was so nice. We laughed about it all and Elliot of course had fun attempting to charm her! As we finished lunch we got a page to head back down to the ICU. To our suprise after only about an hour the surgery was done and things went great. His pressure inside his head was 17 and normal is nothing more than 15. He now had an extra hole in his head and fluid was starting to drain away and the pressure was also expected to go down.
He had a CT scan and then went to recovery where he started to wake up and ask for me. The staff immediately brought me back and he was doing good just a little nauseated. Soon after they got him up to the Neuro ICU for monitoring and he started to ask to play on the tablet but still sick. He will hopefully be moved out of ICU to a regular room tomorrow and go home late tomorrow or Sunday.
Now at about 9:30 he is resting comfortablly. The last 72 hours or so have been crazy for all of us. I can say the best thing that came out of this was how fast the doctors and staff here reacted. The nurses I saw in neuro recovery and ICU are shocked that the hydrocephalus wasn't caught earlier but since autism signs like speach delay and motor skills problems are also common to hydrocephalus the only real clue without the MRI was his head shape.
I fear that if we had been back in AL this wouldn't have been caught. Once we got here and pushed for a re-evaluation of his condition everything was discovered and we dodged a major bullet. We were able to find things we never knew were there and had honestly more than likely been there since birth. Alvin's chances of recovery are very good right now. We don't expect his autism symptoms to go away completely but there is a chance that the surgery has lessed the pressure on parts of his brain that control things like speech and fine motor skills and those areas could see more improvement.
To all of those who have sent us well wishes thank you so much. I'm sorry we haven't gotten back to every single one but we have seen them and we appreciate it. We are very grateful at the out pouring of support and hopefully here soon I'll get more pictures up
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