Kristy just called me from the hospital to say Michael just squeezed her hand when she ask him too. She told the nurse and the nurse said she told him to squeeze her hand earlier and he did. The doctors had said any movement was just reflexes, he couldn't obey commands...but he just did.
Sunday, April 15, 2012
Kristy's Story...MRI Results
Around noon today a group of Shane's doctors called us in for the MRI results. They had one screen with his MRI from 10 days ago and another with todays. There was obviously a big difference. The tumor in the pons area, the newest one, has almost doubled in size. It was not fluid putting pressure on his brain-it is the tumor. The doctors say there is nothing else to do for him. We ask for surgery, they said it would kill him, we ask for chemo, they said no time for it to work, then we ask for radiation, they said he has already had more than he should have had. They said Michael was in a coma and has no brain activity.
Needless to say it broke our hearts, especially Kristy, Kyle, and his mom. We spent a few hours crying then started questioning the doctors answers. Why not surgery? He will die without it so why not try? It has been successfully done before but poses a very high risk of permanent damage. He may end up with his "thinking" part of his brain but in a wheel chair on a ventilator for the rest of his life. Would Michael want this?
Chemo is out. the tumor is growing way to fast for it to help. But why not radiation? Maybe a few low dose zaps of radiation would stop and possibly shrink the tumor. So we requested a meeting with a radiologist to go over the possibilities. Kristy also wants to talk to the doctors at Duke Hospital for their opinion and advice.
Tomorrow will be a very rough day. In our hearts we know the answers, we just don't want to accept them.
Needless to say it broke our hearts, especially Kristy, Kyle, and his mom. We spent a few hours crying then started questioning the doctors answers. Why not surgery? He will die without it so why not try? It has been successfully done before but poses a very high risk of permanent damage. He may end up with his "thinking" part of his brain but in a wheel chair on a ventilator for the rest of his life. Would Michael want this?
Chemo is out. the tumor is growing way to fast for it to help. But why not radiation? Maybe a few low dose zaps of radiation would stop and possibly shrink the tumor. So we requested a meeting with a radiologist to go over the possibilities. Kristy also wants to talk to the doctors at Duke Hospital for their opinion and advice.
Tomorrow will be a very rough day. In our hearts we know the answers, we just don't want to accept them.
Kristy's Story...Long Week for Michael
Well there was no magical cure for Michael this week. Since the MRI he has progressed...backwards. He quit breathing on his own and we lost all response from him. He was slowly slipping into a coma. The doctors could not figure out why the change in him came on so fast. They stopped all his pain medicines hoping it was them putting him in the trance-like state. But that still did not bring him around.
Yesterday around noon they did a CT Scan and discovered he had swelling in his brain. They needed to do surgery immediately to relieve the fluid causing pressure. If the surgery was not done he would die shortly but the surgery could also kill him. The ICU cleared his room and did the surgery right there. Michael made it through the surgery but the drain was not working. The surgeon had to make some adjustments but finally had it draining. He was immediately showing signs of improvement.
But that didn't last long. It quit draining and Michael was slipping backwards once again. At 3:00 am they had to do another surgery on the other side of his brain to try and drain more fluid. The surgery went good and the second drain was working. Michael started immediately showing sign of improvement once again.
It is now 6:30 am and Michael is scheduled for another MRI shortly. The doctors hope to find out what is putting pressure on the brain stem.
I will update the blog as soon as possible. Pam
Yesterday around noon they did a CT Scan and discovered he had swelling in his brain. They needed to do surgery immediately to relieve the fluid causing pressure. If the surgery was not done he would die shortly but the surgery could also kill him. The ICU cleared his room and did the surgery right there. Michael made it through the surgery but the drain was not working. The surgeon had to make some adjustments but finally had it draining. He was immediately showing signs of improvement.
But that didn't last long. It quit draining and Michael was slipping backwards once again. At 3:00 am they had to do another surgery on the other side of his brain to try and drain more fluid. The surgery went good and the second drain was working. Michael started immediately showing sign of improvement once again.
It is now 6:30 am and Michael is scheduled for another MRI shortly. The doctors hope to find out what is putting pressure on the brain stem.
I will update the blog as soon as possible. Pam
Sunday, April 8, 2012
Kristy's Story...MRI Results
The MRI results came in Saturday. Both tumors have grown and merged together. Washington U says there is nothing more they can do for him. We are waiting to see if Duke has a magic card up their sleeve.
Thursday, April 5, 2012
Kristy's Story...Michael is Slowly Improving
Well it has been a long 25 days since my last post on March 11th. We have been a little busy to say the least! Me with Kristy and Michaels kids and Kristy with staying at the hospital day and night to help take care of Michael. But I have some time now to catch everyone up on Michaels current condition.
Michael has had a rough road to climb the past month but he is doing it, with Kristy's encouragement. His lungs have been his biggest hurdle to get through. A week ago the RSV infection in his lungs was finally gone. Since then he has gone from the ventilator to having a treach put in to help him breathe. Since he no longer has a big tube down his throat he can communicate, if you can read lips. Reading lips is a lot harder than you would think and he gets frustrated when we don't understand him. He won't be able to speak until the treach is capped off and he is breathing on his own.
The past several days they are turning his air from the treach off and having him attempt to breathe himself. They started the first day with one hour on his own, then they went to two, then four, and now he is doing close to 8 hours, twice a day. Maybe a few more days then he can be totally on his own.
The next hurdle is getting his body back to at least where it was before all this started. With having the stroke and being in bed for a month he has lost all his muscles. Yesterday a physical therapist started working with him to gain some strength back. He was moved to a new section of Barnes yesterday called the PIC to work more with him on physical improvements.
Along with the physical therapy they are going to start concentrating on what got him in this situation in the first place...his brain tumor. Right next door to where he is in the hospital now is the cancer section. Michael will have an MRI today to see what the tumor has been doing this past month. Then they will decide if he can handle more chemo or if something else can be done.
For those that visit Michael in the hospital his new room is in the North section. Park in the North garage on Park View Street. Take the elevator to the 3rd floor for the bridge to the hospital. Look for the Shoneburg elevators and go to the eighth floor. I don't have a room number yet so you will need to ask for it.
I will update again soon.
Pam
Michael has had a rough road to climb the past month but he is doing it, with Kristy's encouragement. His lungs have been his biggest hurdle to get through. A week ago the RSV infection in his lungs was finally gone. Since then he has gone from the ventilator to having a treach put in to help him breathe. Since he no longer has a big tube down his throat he can communicate, if you can read lips. Reading lips is a lot harder than you would think and he gets frustrated when we don't understand him. He won't be able to speak until the treach is capped off and he is breathing on his own.
The past several days they are turning his air from the treach off and having him attempt to breathe himself. They started the first day with one hour on his own, then they went to two, then four, and now he is doing close to 8 hours, twice a day. Maybe a few more days then he can be totally on his own.
The next hurdle is getting his body back to at least where it was before all this started. With having the stroke and being in bed for a month he has lost all his muscles. Yesterday a physical therapist started working with him to gain some strength back. He was moved to a new section of Barnes yesterday called the PIC to work more with him on physical improvements.
Along with the physical therapy they are going to start concentrating on what got him in this situation in the first place...his brain tumor. Right next door to where he is in the hospital now is the cancer section. Michael will have an MRI today to see what the tumor has been doing this past month. Then they will decide if he can handle more chemo or if something else can be done.
For those that visit Michael in the hospital his new room is in the North section. Park in the North garage on Park View Street. Take the elevator to the 3rd floor for the bridge to the hospital. Look for the Shoneburg elevators and go to the eighth floor. I don't have a room number yet so you will need to ask for it.
I will update again soon.
Pam
Sunday, March 11, 2012
Kristy's Story...Heart Attack, Another Stroke, Miracle
This has been one heck of a week! Last Tuesday, March 6th, on Michaels youngest sons birthday Michael had a massive heart attack. Kristy came home from work around 1:30 in the afternoon and found Michael barely breathing and his eyes rolled back in his head. She immediately called 911. The ambulance arrived and had to resuscitate him, his heart had stopped. He was rushed to the hospital and arrived barely alive. He couldn't breathe on his own and needed two heart pumps to keep his heart going. He stayed at this hospital long enough to get him stable then they sent him by ambulance to Washington U / Barnes Jewish Hospital, a larger and more equipped to handle his serious condition hospital.
He arrived around midnight and they worked on him for hours just to get him somewhat stable. A heart specialist came in to talk with us and said he was in very serious condition and was not expected to survive. But his heart did not show any blocked arteries or other defects that would cause a heart attack. They needed to figure out what caused it. At this point his heart was only functioning at 10%.
The next couple days they worked on finding what caused the heart attack. They found he has an infection called RSV. An infection normally found in infants, not grown men. With all the medicines Michael is on the infectious disease doctors had to find out if the only medicine that would get rid of RSV could be used to help Michael. Luckily it was and treatment was soon started. He is still getting the medicine for RSV.
Michael slowly started to improve over the next couple days. His heart was up to 50% so one of the pumps was attempted to be removed. Shortly after starting the procedure his heart stopped and they had to shock him back again. The following day they were successful in removing the pump so things were looking up.
But things are never easy for Michael. That evening after all his family and friends went home, except for Kristy and Sue, (Michaels mom,) Michael had a stroke. Neurologist worked all night on him and reported the next morning that he was most likely brain dead. They could get no response from him. They also reported he had sepsis. Sepsis is a serious medical condition caused by an overwhelming immune response to infection. Chemicals released into the blood to fight infection trigger widespread inflammation. Inflammation may result in organ damage. Blood clotting during sepsis reduces blood flow to limbs and internal organs, depriving them of nutrients and oxygen. In severe cases, one or more organs fail. In the worst cases, infection leads to a life-threatening drop in blood pressure, called septic shock. This can quickly lead to the failure of several organs -- lungs, kidneys, and liver -- causing death. Devastating news for Michaels family.
Kristy was told they were going to give him 2 days to improve but gave her very little hope. They wanted her to be prepared to "pull the plug" if they did not see any improvement. She prepared their oldest son Kyle and the rest of his family. Kyles heart was broke. For two days family tried to get a response from him but had no luck until... Kyle once again went to his room. Kyle bent down and yelled "Dad" into his ear and Michael opened his eyes nice and wide, he heard his son.
All Michaels family and friends were gathered in the waiting room Saturday. It was a sad, tearful day fearing the worst. Early evening the doctor came to get Kristy for her decision. He took her to a private room where she told him what happened with Kyle. He said it may have been a coincidence but if she wanted another day she could have it. She didn't want just one more day she wants the rest of her life with Michael. Doctors gave Michael only had a .5% chance of coming back. Kristy will take any % she can get.
Michaels miracle...When family arrived Sunday morning Kristy was all smiles! We hadn't seen her smile in a very long time. Through the night Michael gave many signs that he was far from brain dead! He would open his eyes for Kristy and squeeze her hand. She told his doctor and he gave Michael some commands. Michael could raise his arm and wiggle his toes when told. Throughout today he was responding, even with an attempt to talk (he can't with the respirator) and a smile. Life was good today.
Michael still has a long way to go but I believe him and Kristy will once again climb this hurdle.
He arrived around midnight and they worked on him for hours just to get him somewhat stable. A heart specialist came in to talk with us and said he was in very serious condition and was not expected to survive. But his heart did not show any blocked arteries or other defects that would cause a heart attack. They needed to figure out what caused it. At this point his heart was only functioning at 10%.
The next couple days they worked on finding what caused the heart attack. They found he has an infection called RSV. An infection normally found in infants, not grown men. With all the medicines Michael is on the infectious disease doctors had to find out if the only medicine that would get rid of RSV could be used to help Michael. Luckily it was and treatment was soon started. He is still getting the medicine for RSV.
Michael slowly started to improve over the next couple days. His heart was up to 50% so one of the pumps was attempted to be removed. Shortly after starting the procedure his heart stopped and they had to shock him back again. The following day they were successful in removing the pump so things were looking up.
But things are never easy for Michael. That evening after all his family and friends went home, except for Kristy and Sue, (Michaels mom,) Michael had a stroke. Neurologist worked all night on him and reported the next morning that he was most likely brain dead. They could get no response from him. They also reported he had sepsis. Sepsis is a serious medical condition caused by an overwhelming immune response to infection. Chemicals released into the blood to fight infection trigger widespread inflammation. Inflammation may result in organ damage. Blood clotting during sepsis reduces blood flow to limbs and internal organs, depriving them of nutrients and oxygen. In severe cases, one or more organs fail. In the worst cases, infection leads to a life-threatening drop in blood pressure, called septic shock. This can quickly lead to the failure of several organs -- lungs, kidneys, and liver -- causing death. Devastating news for Michaels family.
Kristy was told they were going to give him 2 days to improve but gave her very little hope. They wanted her to be prepared to "pull the plug" if they did not see any improvement. She prepared their oldest son Kyle and the rest of his family. Kyles heart was broke. For two days family tried to get a response from him but had no luck until... Kyle once again went to his room. Kyle bent down and yelled "Dad" into his ear and Michael opened his eyes nice and wide, he heard his son.
All Michaels family and friends were gathered in the waiting room Saturday. It was a sad, tearful day fearing the worst. Early evening the doctor came to get Kristy for her decision. He took her to a private room where she told him what happened with Kyle. He said it may have been a coincidence but if she wanted another day she could have it. She didn't want just one more day she wants the rest of her life with Michael. Doctors gave Michael only had a .5% chance of coming back. Kristy will take any % she can get.
Michaels miracle...When family arrived Sunday morning Kristy was all smiles! We hadn't seen her smile in a very long time. Through the night Michael gave many signs that he was far from brain dead! He would open his eyes for Kristy and squeeze her hand. She told his doctor and he gave Michael some commands. Michael could raise his arm and wiggle his toes when told. Throughout today he was responding, even with an attempt to talk (he can't with the respirator) and a smile. Life was good today.
Michael still has a long way to go but I believe him and Kristy will once again climb this hurdle.
Thursday, March 1, 2012
Kristy's Story...Definitely a New Tumor
After several days of testing at Duke the doctors have determined it is definitely a tumor in the pons area of the brain. It has grown since Michael's last MRI and now covers the entire area. Duke is giving Michael a dose of chemo today then they will be coming back home soon.
I am hoping the Burzynski clinic has some quick answers as to whether they can now help him.
I am hoping the Burzynski clinic has some quick answers as to whether they can now help him.
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