We got the phone call today for an MRI appointment. This Thursday morning. The doctors will be discussing Mason at their next surgery meeting . . I think July 14. It involves several neurologists, neurosurgeon, nurses, psychologists, where they discuss whether the kids are good candidates for the various types of epilepsy surgery. ( I mentioned the corpus callosotomy brain surgery in the last update)
Also, Mason’s nighttime seizures have been increasing. Last night he had one at 1 am, and it looks like he fractured or severely bruised his nose. I had started putting his helmet on around 5 am (he has been having two or three drop seizures between 5 and 8 am – they come on suddenly and he buckles and falls to the floor – often after hitting the window sill first – he likes looking out of his window when he wakes), but now will I spend more of the night in his room. I don’t sleep as well, but Mason is safer that way. So hopefully the possibility of brain surgery will be fast tracked.
Well, thank you for your continued prayers. God really does answer them!!! Time to get ready for going along on Mason’s kindergarten field trip tomorrow!!
Off to White Rock. Forecast – RAIN - !?!?!?!?!?!?
Tuesday, June 21, 2005
Thursday, June 09, 2005
We're home !!!!!!!!!
Hello everyone!!!!!!!
Thank you, Thank you, Thank you, Thank you, Thank you, Thank you . . . for your prayers. Were they ever answered!! But, I’ll start at the beginning . . .
First off the appointment was very nearly cancelled because Mason had been exposed to chicken pox. Potentially very serious for kids that are already sick in the hospital. So they make sure that kids that have been exposed don’t come near. Neurology department over-ruled Infectious Diseases department, because they didn’t want Mason to wait again. That ends up making more work for those on the ward. Gowns, gloves, masks, extra hand washing, etc. And because of this, Mason was hooked up to the EEG on the ward instead of the EEG room. Not as comfortable, etc. The room also reminded Mason of going to Emergency several weeks back.
Screaming began the moment we walked in the door. He settled after a few minutes while we waited for the technician. We always strap him down and wrap him up to keep his arms and legs down. He normally cries and screams while it’s being done, but has tended to settle down partially after a while. This time there was NO settling down. He literally screamed for the entire time. Over an hour. His face was redder than I ever could have imagined. And I have seen him scream and cry before!!! Daryl’s Mom came along and she held down his lower legs. I held down his body. (with our bodies, that is) one technician held his face and head while another tech glued on the EEG leads. (long wires with little discs at the end that are attached to a computer) they glued on 25 (up to 30 in the past). Mason wasn’t the only one who cried. I still find this very emotional to even write about it. Later I noticed that he had a lot of red dots above and below his eyes. Initially I thought it was residue from the marker they use to mark the spots on his head. They were actually spots where tons of blood vessels burst from crying so hard and so long.
That is where the bad stuff ends. The rest of the story is happy with a happy ending . . . .
A few minutes after returning to his room (isolation) he perked up and smiled and was himself for a few minutes. Then the seizures began. Yeah! The more seizures, the more information the doctor would get, and the sooner we could go home. so, over the 24 hour period, he had a lot. A real answer to prayer. It is not uncommon for kids to suddenly not have seizures or have a lot less when they are going for testing, making the process longer. I think he had close to 15 seizures while in the hospital. One was around an hour long, with several different kinds happening during that time. There were a couple of others that were 20 - 40 minutes long. So it was good to see that happen there so the doctor could see them.
Also . . . Mason stayed in his bed the whole time!!!!!!!!!!!!! That is nothing less that a miracle. This is a boy who does not walk. He runs and runs and runs, oh and climbs and climbs and explores. He is constantly on the move. He had to stay in the bed because he was hooked up to a computer and he had to remain in the view of the video camera. The first time he tried to get out of bed was an hour before we left today. Not once in that entire 23 hours prior did Mason even indicate that he wanted to get out. That is so not like him! He also only put his hand to his head a few times, and we would say "no, Mason" and he would put his hand down. No wires pulled or tugged at!!
Daryl came after work for a while, then took his Mom home. My sister Kim came a while before they left and stayed overnight with me. Someone had to constantly be watching Mason because we had to press a button each time a seizure started. We took turns sleeping. Not easy to do with all the bright lights on all night! I got just over 3 hours of sleep in total. Mason on the other hand had no problem sleeping with the lights on. He woke a couple of times because of seizures, but had a great 7 hour stretch in the middle. He was a happy kid through out the whole ordeal after the initial hook up.
After reviewing some of the data, Dr. Connolly told me that it looked like Mason would be a good candidate for the corpus callosotomy brain surgery which has a very good success rate for eliminating drop seizures.
Mason will have an MRI once the chicken pox risk is gone, as well.
The happy ending . . . . we’re home!!!!!!!!!!!!!!!
Thank you so very much for your prayers. God is so good in hearing and answering, isn’t He?!?!?!?
1 Chronicles 16:8-12
Give thanks to the LORD, call on his name;
make known among the nations what he has done.
Sing to him, sing praise to him; tell of all his wonderful acts.
Glory in his holy name; let the hearts of those who seek the LORD rejoice.
Look to the LORD and his strength; seek his face always.
Remember the wonders he has done, his miracles, and the judgments he pronounced,
Love, Shirley
Thank you, Thank you, Thank you, Thank you, Thank you, Thank you . . . for your prayers. Were they ever answered!! But, I’ll start at the beginning . . .
First off the appointment was very nearly cancelled because Mason had been exposed to chicken pox. Potentially very serious for kids that are already sick in the hospital. So they make sure that kids that have been exposed don’t come near. Neurology department over-ruled Infectious Diseases department, because they didn’t want Mason to wait again. That ends up making more work for those on the ward. Gowns, gloves, masks, extra hand washing, etc. And because of this, Mason was hooked up to the EEG on the ward instead of the EEG room. Not as comfortable, etc. The room also reminded Mason of going to Emergency several weeks back.
Screaming began the moment we walked in the door. He settled after a few minutes while we waited for the technician. We always strap him down and wrap him up to keep his arms and legs down. He normally cries and screams while it’s being done, but has tended to settle down partially after a while. This time there was NO settling down. He literally screamed for the entire time. Over an hour. His face was redder than I ever could have imagined. And I have seen him scream and cry before!!! Daryl’s Mom came along and she held down his lower legs. I held down his body. (with our bodies, that is) one technician held his face and head while another tech glued on the EEG leads. (long wires with little discs at the end that are attached to a computer) they glued on 25 (up to 30 in the past). Mason wasn’t the only one who cried. I still find this very emotional to even write about it. Later I noticed that he had a lot of red dots above and below his eyes. Initially I thought it was residue from the marker they use to mark the spots on his head. They were actually spots where tons of blood vessels burst from crying so hard and so long.
That is where the bad stuff ends. The rest of the story is happy with a happy ending . . . .
A few minutes after returning to his room (isolation) he perked up and smiled and was himself for a few minutes. Then the seizures began. Yeah! The more seizures, the more information the doctor would get, and the sooner we could go home. so, over the 24 hour period, he had a lot. A real answer to prayer. It is not uncommon for kids to suddenly not have seizures or have a lot less when they are going for testing, making the process longer. I think he had close to 15 seizures while in the hospital. One was around an hour long, with several different kinds happening during that time. There were a couple of others that were 20 - 40 minutes long. So it was good to see that happen there so the doctor could see them.
Also . . . Mason stayed in his bed the whole time!!!!!!!!!!!!! That is nothing less that a miracle. This is a boy who does not walk. He runs and runs and runs, oh and climbs and climbs and explores. He is constantly on the move. He had to stay in the bed because he was hooked up to a computer and he had to remain in the view of the video camera. The first time he tried to get out of bed was an hour before we left today. Not once in that entire 23 hours prior did Mason even indicate that he wanted to get out. That is so not like him! He also only put his hand to his head a few times, and we would say "no, Mason" and he would put his hand down. No wires pulled or tugged at!!
Daryl came after work for a while, then took his Mom home. My sister Kim came a while before they left and stayed overnight with me. Someone had to constantly be watching Mason because we had to press a button each time a seizure started. We took turns sleeping. Not easy to do with all the bright lights on all night! I got just over 3 hours of sleep in total. Mason on the other hand had no problem sleeping with the lights on. He woke a couple of times because of seizures, but had a great 7 hour stretch in the middle. He was a happy kid through out the whole ordeal after the initial hook up.
After reviewing some of the data, Dr. Connolly told me that it looked like Mason would be a good candidate for the corpus callosotomy brain surgery which has a very good success rate for eliminating drop seizures.
Mason will have an MRI once the chicken pox risk is gone, as well.
The happy ending . . . . we’re home!!!!!!!!!!!!!!!
Thank you so very much for your prayers. God is so good in hearing and answering, isn’t He?!?!?!?
1 Chronicles 16:8-12
Give thanks to the LORD, call on his name;
make known among the nations what he has done.
Sing to him, sing praise to him; tell of all his wonderful acts.
Glory in his holy name; let the hearts of those who seek the LORD rejoice.
Look to the LORD and his strength; seek his face always.
Remember the wonders he has done, his miracles, and the judgments he pronounced,
Love, Shirley
Coming up
Hello
Last time around a let you know of a couple of events coming up for Mason. The dental appointment went great. They first put him to sleep with gas before giving him the IV. J no pain for the boy!! He came out of it with 6 minor fillings, and a halloween pumpkin smile. He had lost a tooth the week before, one other adult tooth was halfway in, then had two loose teeth pulled while at the hospital. It all went very well. Great recovery. Actually I was hoping he would be a little more sleepy. Not.
Today is the day we are going in to Childrens Hospital overnight for Intensive Monitoring. About 30 little wires will be glued to his head for an EEG to read the electrical activity in his brain. He will be videoed during this time as well. The hard part will be keeping this EXTREMELY active boy in a small area to capture every move on video for 24 hours or so. (pray that he will have LOTS of seizures during this time so we don’t have to stay longer) Our appointment begins at 1 pm this afternoon. It was nearly canceled because Mason was exposed to chicken pox last week, miraculously, they are letting him in, although it put them through more work keeping him in isolation etc.
Gotta run, now, and get the kids off to school. Thanks for your continued prayers and thoughts. !!!
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