Tuesday, November 18, 2008
Sean Update
I heard from Sean's counselor today. He received and read through all of the report paperwork from the Psychologist who tested Sean and we have a 504/IEP meeting on December 2nd at 7:30AM. It was to have been just a 504 meeting, but the psychologist believes he needs an IEP to make sure he makes it through high school in a way that serves his best interest. Also in his best interest, we will be switching some classes around at the semester break to make sure he has access to some resource teachers that he doesn't have access to now. Hopefully this will help him have a successful high school experience that leads to graduation!!!
Tuesday, November 11, 2008
More Sean stuff...
Ok, we realized that Sean had an mri in the hospital, toward the end just as he was waking up. They even took extra shots to see if there were any indices of stroke. Dr. Gerhaety (the neurologist from there) said nothing in the MRI indicated anything like brain injury and that instead he needs to be evaluated by an occupational therapist to decide if there has been brain injury. So she has a call into one, and they should be getting back to me. So it looks like h may not have to have one again which rocks because they are scary. He did have an OT work with him after the surgery, but not to do testing "looking for brain injury".
Tuesday, October 21, 2008
Sean's Neuro-Psychological Tests
Dyspraxia
http://en.wikipedia.org/wiki/Developmental_dyspraxia
And slight Dyslexia along with his Dysgraphia (which was what he was being tested for for the school). These are all clustered under the Aphasia kinds of disabilities.
http://en.wikipedia.org/wiki/Aphasia
That is the easy part. The difficult part is the discrepancy between the left and right hemispheres of his brain. In IQ, the Language side of the brain scores 32 points higher than the non-language of the brain. This is right hemisphere impairment. She stated that this kind of differential from side to side is not seen very often. She asked me if he was Hypoxic at birth, I told her no (he was never below 60% oxygenated). We talked about the time when the 14 year old threw the brick over the fence in Austin and hit him in the head. He touched where the scar is and she felt that wasn't it either. She is going to refer him for an MRI.
The good news is this will get him services at school. The bad news is she suspects a brain injury.
http://en.wikipedia.org/wiki/Developmental_dyspraxia
And slight Dyslexia along with his Dysgraphia (which was what he was being tested for for the school). These are all clustered under the Aphasia kinds of disabilities.
http://en.wikipedia.org/wiki/Aphasia
That is the easy part. The difficult part is the discrepancy between the left and right hemispheres of his brain. In IQ, the Language side of the brain scores 32 points higher than the non-language of the brain. This is right hemisphere impairment. She stated that this kind of differential from side to side is not seen very often. She asked me if he was Hypoxic at birth, I told her no (he was never below 60% oxygenated). We talked about the time when the 14 year old threw the brick over the fence in Austin and hit him in the head. He touched where the scar is and she felt that wasn't it either. She is going to refer him for an MRI.
The good news is this will get him services at school. The bad news is she suspects a brain injury.
Thursday, August 28, 2008
Sean's Open Heart Surgery
On July 31st, Sean, age 14, went in for his 3rd open heart surgery. It was going to be a routine thing...they would put in a valve where he didn't have one (human or pig, whatever fit the best) and tighten up the tricuspid valve that leaked like a sieve. But routine is not what we got...
While trying to attach the heart/lung bypass machine, the surgeon nicked his femoral artery and he bled into his abdomen. The anesthesiologist, seeing something had gone wrong, injected him with brain protecting drugs. The surgical team raced to get the bypass machine hooked up to his chest instead. His blood pressure/oxygen to the brain was down for 5-6 minutes.
Because of this issue, they decided to chill his body for 18-24 hours to prevent brain swelling. This was done by attaching a device called "Arctic Sun" to his body, (see pictures here: http://www.seanmasters13.com/Photos.html) and cooling him to 31 or 33 (I truly can't remember) degrees centigrade. Touching him was horrific, as he was so cold and rigid from the device and the drugs they had him on to keep him from shivering.
On the 2nd day they began to warm him up. The warned us that often the hypothalamus tries to overcompensate as the body warms, and his did. His temperature shot up and his blood pressure was up and down in a totally random, really scary way. I went home that night afraid we were going to lose him.
The next day, however, I discovered that an angel had been sent to care for him as his night nurse. I had met Andrea before I left the hospital that night (my husband stayed with him at night) but I didn't know how critical she was to Sean's care.
The neurologist had told us (and Andrea) that she wanted the Arctic Sun device left on him in case his temperature kept climbing. Andrea watched him that whole night as his blood pressure climbed and crashed, and she came to believe that the Arctic Sun device (even though it was off) was still making him feel chilled and that because of this he was fighting the cold and underneath all the drugs he was shivering. So she made the decision to take the device off, against the recommendation of the neurologist.
When I returned the next morning, it was to a totally different child. You could see that he had relaxed. His blood pressure was back to normal. His temperature was still fluctuating a bit, so Andrea had put a cooling blanket underneath him in case he needed to be cooled down. From this moment on, Sean started to make improvements.
He began to come out of the drugs and started making eye contact. He began answering questions we asked him with appropriate hand movements. (Waving, thumbs up, and also head shakes).
Andrea was followed by another angel nurse named Deanna. Deanna was not to be outdone by Andrea, and against recommendations decided that Sean needed to be off the ventilator. She began by turning down the ventilators breaths and forcing him to breathe instead of the machine. She came on shift at 7AM and by 4PM that afternoon she had him off the ventilator.
At that point he asked us in a tortured whisper if he could go home today. We had to tell him no. But we also gave him a list of things that once he could do, he could go home. He tried to climb off the bed that instant to get started, but we told him no, that people would have to help him with stuff for awhile.
That very day PT came to work with him and he got to sit up in a wheel chair for 5 minutes. That exhausted him and he slept 4 hours. But it was a beginning!!!
The next day he was moved out of PICU and into an intermediate room. He actually walked halfway there with the PT team. And that was just the beginning of him completing his list of things to be able to go home.
One of the most difficult things he had to manage was learning to swallow liquids again. The attempts choked him. He was only allowed thickened liquids to drink and pureed food to eat (which gagged him). But he drank and ate what he could, working hard on his list of tasks to accomplish to get to go home.
Over the weekend we were able to take him outside to the garden on the grounds. We also took him to the cafeteria with us every time. Part of the time he walked, part of the time he rode. He was finally able to go to the bathroom unsupervised. He managed to eat something that wasn't pureed. And finally, on Monday morning, he swallowed some Sprite without choking!!! We were on our way home at noon that day.
Sean is working with Physical Therapists, Occupational Therapists and Speech Therapists through an organization called "Rehab Without Walls." These women are fabulous and they are making great progress with Sean in walking, self care, posture, going places, and talking. They will also go into the school with us to meet with all of his teachers/counselors to be sure he has what he needs to have a successful school year. The team that is working with him thinks he is a fabulous teen and they all love working with him.
At this point in time, we have no doubt anymore that Sean will make a full recovery. At his follow-up appointment on August 21st, I was able to see his new valve functioning in his heart, and the ring around the tricuspid valve that tightens it, in his Echo cardiogram. His EKG looks almost normal. Truly he is a walking miracle!!!!
While trying to attach the heart/lung bypass machine, the surgeon nicked his femoral artery and he bled into his abdomen. The anesthesiologist, seeing something had gone wrong, injected him with brain protecting drugs. The surgical team raced to get the bypass machine hooked up to his chest instead. His blood pressure/oxygen to the brain was down for 5-6 minutes.
Because of this issue, they decided to chill his body for 18-24 hours to prevent brain swelling. This was done by attaching a device called "Arctic Sun" to his body, (see pictures here: http://www.seanmasters13.com/Photos.html) and cooling him to 31 or 33 (I truly can't remember) degrees centigrade. Touching him was horrific, as he was so cold and rigid from the device and the drugs they had him on to keep him from shivering.
On the 2nd day they began to warm him up. The warned us that often the hypothalamus tries to overcompensate as the body warms, and his did. His temperature shot up and his blood pressure was up and down in a totally random, really scary way. I went home that night afraid we were going to lose him.
The next day, however, I discovered that an angel had been sent to care for him as his night nurse. I had met Andrea before I left the hospital that night (my husband stayed with him at night) but I didn't know how critical she was to Sean's care.
The neurologist had told us (and Andrea) that she wanted the Arctic Sun device left on him in case his temperature kept climbing. Andrea watched him that whole night as his blood pressure climbed and crashed, and she came to believe that the Arctic Sun device (even though it was off) was still making him feel chilled and that because of this he was fighting the cold and underneath all the drugs he was shivering. So she made the decision to take the device off, against the recommendation of the neurologist.
When I returned the next morning, it was to a totally different child. You could see that he had relaxed. His blood pressure was back to normal. His temperature was still fluctuating a bit, so Andrea had put a cooling blanket underneath him in case he needed to be cooled down. From this moment on, Sean started to make improvements.
He began to come out of the drugs and started making eye contact. He began answering questions we asked him with appropriate hand movements. (Waving, thumbs up, and also head shakes).
Andrea was followed by another angel nurse named Deanna. Deanna was not to be outdone by Andrea, and against recommendations decided that Sean needed to be off the ventilator. She began by turning down the ventilators breaths and forcing him to breathe instead of the machine. She came on shift at 7AM and by 4PM that afternoon she had him off the ventilator.
At that point he asked us in a tortured whisper if he could go home today. We had to tell him no. But we also gave him a list of things that once he could do, he could go home. He tried to climb off the bed that instant to get started, but we told him no, that people would have to help him with stuff for awhile.
That very day PT came to work with him and he got to sit up in a wheel chair for 5 minutes. That exhausted him and he slept 4 hours. But it was a beginning!!!
The next day he was moved out of PICU and into an intermediate room. He actually walked halfway there with the PT team. And that was just the beginning of him completing his list of things to be able to go home.
One of the most difficult things he had to manage was learning to swallow liquids again. The attempts choked him. He was only allowed thickened liquids to drink and pureed food to eat (which gagged him). But he drank and ate what he could, working hard on his list of tasks to accomplish to get to go home.
Over the weekend we were able to take him outside to the garden on the grounds. We also took him to the cafeteria with us every time. Part of the time he walked, part of the time he rode. He was finally able to go to the bathroom unsupervised. He managed to eat something that wasn't pureed. And finally, on Monday morning, he swallowed some Sprite without choking!!! We were on our way home at noon that day.
Sean is working with Physical Therapists, Occupational Therapists and Speech Therapists through an organization called "Rehab Without Walls." These women are fabulous and they are making great progress with Sean in walking, self care, posture, going places, and talking. They will also go into the school with us to meet with all of his teachers/counselors to be sure he has what he needs to have a successful school year. The team that is working with him thinks he is a fabulous teen and they all love working with him.
At this point in time, we have no doubt anymore that Sean will make a full recovery. At his follow-up appointment on August 21st, I was able to see his new valve functioning in his heart, and the ring around the tricuspid valve that tightens it, in his Echo cardiogram. His EKG looks almost normal. Truly he is a walking miracle!!!!
Wednesday, July 9, 2008
I am accepted as a postulent to OEF...
| Lord, make me an instrument of your peace, Where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; where there is sadness, joy; O Divine Master, grant that I may not so much seek to be consoled as to console; For it is in giving that we receive; | |
St. Francis was born at Assisi in 1182. After a care free youth, he turned his back on inherited wealth and committed himself to God. Like many early saints, he lived a very simple life of poverty, and in so doing, gained a reputation of being the friend of animals. He established the rule of St Francis, which exists today as the Order of St. Francis, or the Franciscans. He died in 1226, aged 44. The prayer has many of the biblical truths of what it means to be a Christian - to seek to give, and in so doing, receive blessings; that the Lord's Prayer asks God to forgive us as we forgive, and that the goal of eternal life can only result from us putting to death our old sinful lives. | |
Tuesday, June 24, 2008
A Life Uncommon
- A Life Uncommon
- by Jewel...I LOVE this song!!!
Don't worry mother
It'll be alright
And don't worry sister
Say your prayers and sleep tight
And it'll be fine
Lover of mine
It'll be just fine
And lend your voices only
To sounds of freedom
No longer lend your strength
To that which you wish
To be free from
Fill your lives
With love and bravery
And you shall lead
A life uncommon
Ive heard your anguish
Ive heard your hearts cry out
We are tired, we are weary
But we aren't worn out
Set down your chains
Until only faith remains
Set down your chains
And lend your voices only
To sounds of freedom
No longer lend your strength
To that which you wish
To be free from
Fill your lives
With love and bravery
And we shall lead
A life uncommon
There are plenty of people
Who pray for peace
But if praying were enough
It would've come to be
Let your words enslave no one
And the heavens will hush themselves
To hear our voices ring our clear
With sounds of freedom
Sounds of freedom
Come on you unbelievers
Move out of the way
There is a new army coming
And we are armed with faith
To live, we must give
To live
And lend our voices only
To sounds of freedom
No longer lend our strength
To that which we wish
To be free from
Fill your lives
With love and bravery
And we shall lead...
And lend our voices only
To sounds of freedom
No longer lend our strength
To that which we wish
To be free from
Fill your lives
With love and bravery
And we shall lead
A life uncommon
Tuesday, May 20, 2008
From a Discussion on Peace
i don't think prayer works without working on what you are praying for. what good does it do to sit at home (or in the woods/church/ synagogue/ temple) praying for peace when you don't live peace? think peace? DO peace? lobby for peace? vote for peaceful ordinances?
revelation isn't a book about the end of the world, by the way. not a road map of the end times. it is an apocalyptic code book for the end of the jewish temple system and the complete domination by rome. only mankind wants to take that and superimpose it on our concept of how the world is going to end.
the world isn't going to end. people are going to focus on peace, live peace, think peace, do peace, lobby for peace, vote for peace, march for peace in ones and twos, in threes in fours, in masses of thousands and hundreds of thousands until they get what they seek.
revelation isn't a book about the end of the world, by the way. not a road map of the end times. it is an apocalyptic code book for the end of the jewish temple system and the complete domination by rome. only mankind wants to take that and superimpose it on our concept of how the world is going to end.
the world isn't going to end. people are going to focus on peace, live peace, think peace, do peace, lobby for peace, vote for peace, march for peace in ones and twos, in threes in fours, in masses of thousands and hundreds of thousands until they get what they seek.
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