Today is hard on us. Yesterday, at 5pm, I watched as my mother and father bid me goodbye.
Here are my thoughts...
Sunday night at approximately 8:30pm, my parents were notified that a device would have to be put into the left side of my brain because the doctors believed I had had another stroke. My mother signed the paperwork, and afterwards discussed options with the doctors.
This is what they said...
"Christopher has suffered a traumatic stroke on the right side of his brain. We went in and removed the dead areas in the right hemisphere. We cannot do that to the left. Christopher's pressures in his left hemisphere positively state that he has had another stroke on the left side, and putting in the device to allow us to drain fluid could kill instantly, because of all the bleeding. If we do the surgery, and it is successful, he will never come out of the vegitative state that he is in now. He will not be able to breathe on his own, feed himself, will not know who you are, can never say I love you again and will require 24 hours full nursing support. How would you like for us to proceed? Discuss it amoungst yourselves and we will put the device in in the morning."
On Monday morning, this is what my mother said...
"My son, for 8 years and 51 weeks, ran, jumped, played basketball, laughed and loved everyone that he met. He is kind hearted, with lots of enthusiasm for life. He loved Clemson football especially player CJ Spiller, loved Michael Jordan, loved to watch movies with me and he cannot do that any longer in the state that he is in right now. Therefore, because the child laying in that bed looks like my Charlie, he will never be that person again in the state that he is in now...and I will not be selfish enough to keep him here to suffer. I have to let him go."
So mom called all the family, told them her plans (she and dad agreed to the plan) and they made the hardest decision of their lives. They let me go. At 4:51pm on Monday, December 7, 2009, my parents with my family and friends, watched the nurses removed my life support, held my hand, and told me that they loved me more than life itself. And I love them too.
So now I must say goodbye and tell everyone that was near and dear to me that I will always love you, and that I am watching over you. I SEE ALL!!!
May God bless you and hold you near his heart as he has done me.
With all my love.
Christopher Charles Gordon
"CHARLIE"
Tuesday, December 8, 2009
Sunday, December 6, 2009
Update
I am so sorry, but I have not had contact with a computer since Friday. My lovely nurse gave my mom permission to use her computer while she sits here with me in the back. Thanks Mrs. Jackie!!!
I am currently holding my own. My heart is improving everyday, and the heart doctors are really impressed. They removed the pace maker today, not the leads, just the box, and I have been doing the work for myself for the last three days.
My stroke occurred in the right side of my brain, and it was basically due to the fact that my carotid artery was severed and brain tissue on the right side was not getting enough blood. All of a sudden, due to a move or not quite sure, the blood came rushing in and the weakened arteries in the right side burst. Thank God that there was a bolt in my head that showed the spiked pressure levels. They immediately took me to surgery and I am still holding my own.
Mom spoke with the doctors today and this is what she knows. I am being bombarded with LOTS of medication for the stroke. I am not on as many meds for my heart as I am for my brain. I have brain activity, because I am able to regulate my own temperature and I am responsive to light in my eyes. I do have some swelling occurring in the brain but the doctors are trying to maintain the pressures in my brain with medication.
Please continue to pray for me and my family. We hold true to the word that God is our salvation and the core of our power and our light. God will not foresaken his children.
Hugs and Kisses.
I am currently holding my own. My heart is improving everyday, and the heart doctors are really impressed. They removed the pace maker today, not the leads, just the box, and I have been doing the work for myself for the last three days.
My stroke occurred in the right side of my brain, and it was basically due to the fact that my carotid artery was severed and brain tissue on the right side was not getting enough blood. All of a sudden, due to a move or not quite sure, the blood came rushing in and the weakened arteries in the right side burst. Thank God that there was a bolt in my head that showed the spiked pressure levels. They immediately took me to surgery and I am still holding my own.
Mom spoke with the doctors today and this is what she knows. I am being bombarded with LOTS of medication for the stroke. I am not on as many meds for my heart as I am for my brain. I have brain activity, because I am able to regulate my own temperature and I am responsive to light in my eyes. I do have some swelling occurring in the brain but the doctors are trying to maintain the pressures in my brain with medication.
Please continue to pray for me and my family. We hold true to the word that God is our salvation and the core of our power and our light. God will not foresaken his children.
Hugs and Kisses.
Friday, December 4, 2009
Update
Here is what I know.
At approximately 1:30pm this afternoon, I had a major stroke on the right side of my brain. I am presently in OR and my mom is informing everyone of what is going on.
At 3:30pm Christopher "Charlie" was taken back to OR to have the right side of his skull removed and to try and release the swelling and bleeding in his brain. This procedure will be a few hours long, and I will update as I know something.
Prayer is all I ask for at this moment!
At approximately 1:30pm this afternoon, I had a major stroke on the right side of my brain. I am presently in OR and my mom is informing everyone of what is going on.
At 3:30pm Christopher "Charlie" was taken back to OR to have the right side of his skull removed and to try and release the swelling and bleeding in his brain. This procedure will be a few hours long, and I will update as I know something.
Prayer is all I ask for at this moment!
Another bump
Today, I have had another bump in my road to recovery. It would appear that I am having problems becoming alert. The intra-cranial pressure gauge they inserted into my head yesterday keeps going above 20 and it needs to stay less than 20. I am having another cat-scan done to see if there are any issues we are not aware of, and mom will update as she knows what is going on.
Other than the pressure issues, I am using my heart on my own, maintaining a fairly good bp with very little help from bp meds and my heart rate is running 112-114/min. The oxygen in my brain is reading in the 60s-70s and mom noticed when they move me sometimes I clench my teeth really hard. I most definitely am in some pain. Doctors here, though, will bolus me with pain meds and I will start to relax.
Other than that, today has been fairly stable, with issues with icp's, but hopefully the doctors will figure it all out really soon.
Love everyone, and thanks for praying for me.
Hugs and kisses!
Other than the pressure issues, I am using my heart on my own, maintaining a fairly good bp with very little help from bp meds and my heart rate is running 112-114/min. The oxygen in my brain is reading in the 60s-70s and mom noticed when they move me sometimes I clench my teeth really hard. I most definitely am in some pain. Doctors here, though, will bolus me with pain meds and I will start to relax.
Other than that, today has been fairly stable, with issues with icp's, but hopefully the doctors will figure it all out really soon.
Love everyone, and thanks for praying for me.
Hugs and kisses!
Thursday, December 3, 2009
Steady
Today has been a fairly good day. We have been stable, just not ready to open eyes and respond to commands as before.
Today, the neurosurgeons thought it would be good to insert a probe in my head to check the pressures in my brain, fearing that the blood flow on the right side is not as adequate at the left. So far, I am doing good with low pressure numbers. My blood pressure is stable and my heart-rate is all my own. I am still being paced if I go under a certain number, but that is to keep my blood pressure up and profusion to my brain good. So far, so good.
The doctors removed all four of the drain tubes that were in my chest and that makes it more susceptible for me to move and not hurt. I should be able to sleep comfortable and turn on my side if I wish. Now if I could only sleep on my stomach I might feel a whole lot better.
We can honestly say that today and even yesterday have been the most stable days that I have had since having the transplant. We pray everyday that I get stronger and am able to open my eyes and greet the world with my new heart. Hopefully, for my parent's sakes, I will do this soon.
We say prayer everyday that I get better and stronger. Pray that God hears our prayers and places his healing hands upon my broken body. With God's healing hands I can accomplish anything!
Today, the neurosurgeons thought it would be good to insert a probe in my head to check the pressures in my brain, fearing that the blood flow on the right side is not as adequate at the left. So far, I am doing good with low pressure numbers. My blood pressure is stable and my heart-rate is all my own. I am still being paced if I go under a certain number, but that is to keep my blood pressure up and profusion to my brain good. So far, so good.
The doctors removed all four of the drain tubes that were in my chest and that makes it more susceptible for me to move and not hurt. I should be able to sleep comfortable and turn on my side if I wish. Now if I could only sleep on my stomach I might feel a whole lot better.
We can honestly say that today and even yesterday have been the most stable days that I have had since having the transplant. We pray everyday that I get stronger and am able to open my eyes and greet the world with my new heart. Hopefully, for my parent's sakes, I will do this soon.
We say prayer everyday that I get better and stronger. Pray that God hears our prayers and places his healing hands upon my broken body. With God's healing hands I can accomplish anything!
Wednesday, December 2, 2009
Why Charlie?
As his mother, I am really frustrated with all this. I am so scared that my child will not make it. I get frustrated knowing that he has fought so hard to get where he is at, and he just keeps getting thrown another curve ball. Can anyone explain the significance for these curve balls?
Charlie is such a sweet, caring and loving child. Never wishes harm to anyone, never meets a stranger and always has a smile on his face. Can someone explain the reasoning as to why Charlie must suffer so?
As his mother, I pray everyday that God will lay his healing hands upon Charlie and give him back to us. Is that being selfish, because I feel that because I am being selfish and wanting to keep him with me, that I am causing the mishaps. It frustrates me and I just wanna scream!
Pray that Charlie comes out of this smiling...I do!!!!
Charlie is such a sweet, caring and loving child. Never wishes harm to anyone, never meets a stranger and always has a smile on his face. Can someone explain the reasoning as to why Charlie must suffer so?
As his mother, I pray everyday that God will lay his healing hands upon Charlie and give him back to us. Is that being selfish, because I feel that because I am being selfish and wanting to keep him with me, that I am causing the mishaps. It frustrates me and I just wanna scream!
Pray that Charlie comes out of this smiling...I do!!!!
Good News!!
Christopher has the results back from his ct.
There is NO swelling and NO blood on his brain. There is a potential for a small, recoverable stroke. This means that there could not be anything wrong, or that he may stutter when he talks or stumbles when he walks. But these are things that can be worked on and recover from if there was a stroke. The stroke part is not actually a proven, because they could not use contrast in the ct scan. We will do more tests as he gets stronger.
Thank you for all your prayers and encouraging thoughts. I love all of you!!!!
There is NO swelling and NO blood on his brain. There is a potential for a small, recoverable stroke. This means that there could not be anything wrong, or that he may stutter when he talks or stumbles when he walks. But these are things that can be worked on and recover from if there was a stroke. The stroke part is not actually a proven, because they could not use contrast in the ct scan. We will do more tests as he gets stronger.
Thank you for all your prayers and encouraging thoughts. I love all of you!!!!
Frustrated
Today is the 20th day that we have been here at MUSC.
Here is my story.
I was born on December 13, 2000, in Greenwood, South Carolina at Self Regional Medical Center. I was born with HLHS (hypo-plastic left heart syndrome). On the 14th of December, I was medivaced to MUSC for the first of three open-heart surgeries. My last surgery was in August 2004. I have since been living as normal a life as I could with the limitations that I have.
On November 12, 2009, I came to MUSC for a routine heart cath that would assess me for candidacy for the heart transplant list. I never left. I had a vagal response to my breathing tube and because my body was so weak, I could not get my heart to restart. Thankfully, I was brought back and was running along smoothly until November 16, 2009, when my sub-clavical artery line erroded and my nutrition was streaming into my chest cavity. I was moved to clean the site and the fluid cascaded into my chest, literally drowning me. At that time I was brought back and was placed on ECMO (heart and lung bypass machine) and put on the heart transplant list. For eight days I was on ECMO until a heart was made available to me by a very gracious family in Virginia.
The transplant was completed on November 25, 2009, and I have had to ride a very bumpy roller coaster ride. I was very sick when I came to MUSC, and because of that, I have had my set backs.
I came off of ECMO after surgery, and seemed to struggle, my body was not used to having so much oxygen and good blood pulsating through it, and so I struggled. Then on November 30th, my carotid artery that the ECMO machine was using, burst and I had to have that artery "sacraficed" and closed off. I had a pretty good day on December 1, 2009, but today, another bump in my road, and as soon as my parents know anything, mom will post.
Here is my story.
I was born on December 13, 2000, in Greenwood, South Carolina at Self Regional Medical Center. I was born with HLHS (hypo-plastic left heart syndrome). On the 14th of December, I was medivaced to MUSC for the first of three open-heart surgeries. My last surgery was in August 2004. I have since been living as normal a life as I could with the limitations that I have.
On November 12, 2009, I came to MUSC for a routine heart cath that would assess me for candidacy for the heart transplant list. I never left. I had a vagal response to my breathing tube and because my body was so weak, I could not get my heart to restart. Thankfully, I was brought back and was running along smoothly until November 16, 2009, when my sub-clavical artery line erroded and my nutrition was streaming into my chest cavity. I was moved to clean the site and the fluid cascaded into my chest, literally drowning me. At that time I was brought back and was placed on ECMO (heart and lung bypass machine) and put on the heart transplant list. For eight days I was on ECMO until a heart was made available to me by a very gracious family in Virginia.
The transplant was completed on November 25, 2009, and I have had to ride a very bumpy roller coaster ride. I was very sick when I came to MUSC, and because of that, I have had my set backs.
I came off of ECMO after surgery, and seemed to struggle, my body was not used to having so much oxygen and good blood pulsating through it, and so I struggled. Then on November 30th, my carotid artery that the ECMO machine was using, burst and I had to have that artery "sacraficed" and closed off. I had a pretty good day on December 1, 2009, but today, another bump in my road, and as soon as my parents know anything, mom will post.
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