Dear Colleen,
I saw Lana this morning and talked with two of her doctors and her RN. They all seem to want to give her a little more time rather than less. Her sister June wants to come on Tuesday to Austin and I will pick her up.
Dad
Sunday, November 1, 2009
Thursday, October 29, 2009
Still No Progress
Dear Colleen,
At 7:45am, I left for Houston to see Lana at the M.D. Anderson Cancer Center . I had gone about fifty miles when I received a call on the cell phone from Maria at Anderson who wanted to talk with me about Lana. I told her I was already on my way there and she said to ask for her when I arrived.
As soon as I arrived I went up to the 7th floor C unit room 723. It is accessible from the F elevators. Not only Maria but virtually everyone on the nursing staff and two of the doctors wanted to see me. I talked at some length with Richard her RN for the last two days. It was obvious they were doing everything to save Lana’s life.
The dialysis machine is about two feet wide one foot deep and nearly five feet tall with large containers of water at the base. It has a monitor also which gives a constant readout of the progress. There were also four IV stands with 22 bags of various sizes and shapes hanging from them. On the left side of her bed is the Oxygen console which also has its own monitor. Besides these two monitors there are three others which give constant readouts of literally all of her vital signs.
Lana’s body is so fragile now because of the constant bleeding that they do not move her for fear of killing her. She is still receiving plasma, platelets and red blood cells. Her white blood cell count is still 0.0, there has been no regeneration of her transplanted bone marrow. Normally it begins within two to three weeks. Tomorrow will be three weeks.
The purpose of my being called was to determine how long life supports should continue in the face of absolutely no improvement in her white blood cell count. Maria thought we should give her another week or to the end of next week. I told them I did not want to be the one to say “pull the plug”. They assured me that the entire staff including me would make that decision. I do have medical power of attorney as well as durable power of attorney. And we both have signed advanced directives as to what to do in this situation. I explained that if she were to recover now it would not be due to any human effort but rather a miracle. They all agreed.
She has not responded to me since a week ago Wednesday the 21st. She reached out to me and pulled me down to her and hugged me. Other than that I have seen no sign of mental activity. She has been asleep or in a coma. Blood is still leaking from her mouth which is still packed with 4 inch gauze squares.
After my talk with the RN, Richard the Chaplin David Stouter stopped by her room to see me. His main purpose was to see that all the legal papers were in order. He has stopped by several times before and was a familiar face which I appreciated. Richard seemed heartbroken to think his extraordinary efforts to save Lana may be in vain.
It is possible to visit her if anyone wanted to, just call me and we can go together. (Note, you most likely have Joe's contact numbers, but if not please make a comment here and Colleen will get it to you).
Dad
At 7:45am, I left for Houston to see Lana at the M.D. Anderson Cancer Center . I had gone about fifty miles when I received a call on the cell phone from Maria at Anderson who wanted to talk with me about Lana. I told her I was already on my way there and she said to ask for her when I arrived.
As soon as I arrived I went up to the 7th floor C unit room 723. It is accessible from the F elevators. Not only Maria but virtually everyone on the nursing staff and two of the doctors wanted to see me. I talked at some length with Richard her RN for the last two days. It was obvious they were doing everything to save Lana’s life.
The dialysis machine is about two feet wide one foot deep and nearly five feet tall with large containers of water at the base. It has a monitor also which gives a constant readout of the progress. There were also four IV stands with 22 bags of various sizes and shapes hanging from them. On the left side of her bed is the Oxygen console which also has its own monitor. Besides these two monitors there are three others which give constant readouts of literally all of her vital signs.
Lana’s body is so fragile now because of the constant bleeding that they do not move her for fear of killing her. She is still receiving plasma, platelets and red blood cells. Her white blood cell count is still 0.0, there has been no regeneration of her transplanted bone marrow. Normally it begins within two to three weeks. Tomorrow will be three weeks.
The purpose of my being called was to determine how long life supports should continue in the face of absolutely no improvement in her white blood cell count. Maria thought we should give her another week or to the end of next week. I told them I did not want to be the one to say “pull the plug”. They assured me that the entire staff including me would make that decision. I do have medical power of attorney as well as durable power of attorney. And we both have signed advanced directives as to what to do in this situation. I explained that if she were to recover now it would not be due to any human effort but rather a miracle. They all agreed.
She has not responded to me since a week ago Wednesday the 21st. She reached out to me and pulled me down to her and hugged me. Other than that I have seen no sign of mental activity. She has been asleep or in a coma. Blood is still leaking from her mouth which is still packed with 4 inch gauze squares.
After my talk with the RN, Richard the Chaplin David Stouter stopped by her room to see me. His main purpose was to see that all the legal papers were in order. He has stopped by several times before and was a familiar face which I appreciated. Richard seemed heartbroken to think his extraordinary efforts to save Lana may be in vain.
It is possible to visit her if anyone wanted to, just call me and we can go together. (Note, you most likely have Joe's contact numbers, but if not please make a comment here and Colleen will get it to you).
Dad
Early Morning Update
Thursday, October 29, 2009 7:26am
Dear Colleen,
The ICU called me on Monday for permission to put a catheter in her neck to connect a kidney dialysis machine because she cannot filter out all the junk they have been given her. They said it would not be permanent. They also constantly monitor her intake and outflow. She had been retaining fluid for nearly a week. But if her kidneys are failing it could mean her body is shutting down. At least I know there may still be some hope. I did not cry until I began reading the responses to my emails.
Joe
Dear Colleen,
The ICU called me on Monday for permission to put a catheter in her neck to connect a kidney dialysis machine because she cannot filter out all the junk they have been given her. They said it would not be permanent. They also constantly monitor her intake and outflow. She had been retaining fluid for nearly a week. But if her kidneys are failing it could mean her body is shutting down. At least I know there may still be some hope. I did not cry until I began reading the responses to my emails.
Joe
Lana in ICU again
Dear Colleen,
I saw Lana on Sunday the 25th. They put her back in the ICU and inserted a tube into her bronchial tube so she could have an uninterrupted supply of oxygen as well as a vacuum tube in her mouth and inflatable devices in each nostril to put pressure on the nasal passage walls to stop the bleeding. She is literally bleeding to death. She received two units of blood but there was already half a unit in the vacuum tank and she had completely saturated a wash rag as well as a mouth full of 4 inch gauze squares. At 9:00am she had a unit of platelets but they are no longer having any clotting effect. Her white blood cell count is still 0.0 so regeneration has not yet begun even after 20 days. She is also unconscious and not a pretty sight.
I suggested that in her present condition there was nothing more I could do to be of any help and they agreed. In fact they do not encourage caregivers to stay in the ICU but rather to go home. They said they would call if there is any change in her condition. I have been back home now in La Grange since Sunday. The nurses concern was how well I was taking this turn of events. I assured them that I was OK that I have been dealing with the situation now for nearly three years. I told them today about the RN who turned, tore off her gown and ran away at the sight of blood three days ago. "One of our nurses here on the eleventh floor?" "Yes," I replied.
It is very stressful being there and not being able to help. We have to hope for a miracle now, the doctors and nurses have done everything humanly possible to save her.
Sincerely,
Joe
I saw Lana on Sunday the 25th. They put her back in the ICU and inserted a tube into her bronchial tube so she could have an uninterrupted supply of oxygen as well as a vacuum tube in her mouth and inflatable devices in each nostril to put pressure on the nasal passage walls to stop the bleeding. She is literally bleeding to death. She received two units of blood but there was already half a unit in the vacuum tank and she had completely saturated a wash rag as well as a mouth full of 4 inch gauze squares. At 9:00am she had a unit of platelets but they are no longer having any clotting effect. Her white blood cell count is still 0.0 so regeneration has not yet begun even after 20 days. She is also unconscious and not a pretty sight.
I suggested that in her present condition there was nothing more I could do to be of any help and they agreed. In fact they do not encourage caregivers to stay in the ICU but rather to go home. They said they would call if there is any change in her condition. I have been back home now in La Grange since Sunday. The nurses concern was how well I was taking this turn of events. I assured them that I was OK that I have been dealing with the situation now for nearly three years. I told them today about the RN who turned, tore off her gown and ran away at the sight of blood three days ago. "One of our nurses here on the eleventh floor?" "Yes," I replied.
It is very stressful being there and not being able to help. We have to hope for a miracle now, the doctors and nurses have done everything humanly possible to save her.
Sincerely,
Joe
Monday, October 26, 2009
Trying to stop the Bleeding
Dear Colleen,
I just came from Lana. They put her back in the ICU this morning and inserted a tube into her bronchial tube so she could have an uninterrupted supply of oxygen as well as a vacuum tube in her mouth and inflatable devices in each nostril to put pressure on the nasal passage walls to stop the bleeding. She is literally bleeding to death. She received two units of blood today but there is already half a unit in the vacuum tank and she has completely saturated a wash rag as well as a mouth full of 4 inch gauze squares. At 9:00 this morning she had a unit of platelets but they are no longer having any clotting effect. Her white blood cell count is still 0.0 so regeneration has not yet begun even after 16 days. She is also unconscious and not a pretty sight. I suggested that in her present condition there was nothing more I could do to be of any help and they agreed. In fact they do not encourage caregivers to stay in the ICU but rather go home. They said they would call if there is any change in her condition. I am back home now in La Grange. The nurses concern was how well I was taking this turn of events. I assured them that I was OK that I have been dealing with the situation now for nearly three years. I told them today about the RN who turned, tore off her gown and ran away at the sight of blood three days ago. "One of our nurses her on the eleventh floor?" "Yes," I replied. It is very stressful being there and not being able to help anymore. We have to hope for a miracle now, the doctors and nurses have now done everything humanly possible to save her.
Sincerely
Joe
I just came from Lana. They put her back in the ICU this morning and inserted a tube into her bronchial tube so she could have an uninterrupted supply of oxygen as well as a vacuum tube in her mouth and inflatable devices in each nostril to put pressure on the nasal passage walls to stop the bleeding. She is literally bleeding to death. She received two units of blood today but there is already half a unit in the vacuum tank and she has completely saturated a wash rag as well as a mouth full of 4 inch gauze squares. At 9:00 this morning she had a unit of platelets but they are no longer having any clotting effect. Her white blood cell count is still 0.0 so regeneration has not yet begun even after 16 days. She is also unconscious and not a pretty sight. I suggested that in her present condition there was nothing more I could do to be of any help and they agreed. In fact they do not encourage caregivers to stay in the ICU but rather go home. They said they would call if there is any change in her condition. I am back home now in La Grange. The nurses concern was how well I was taking this turn of events. I assured them that I was OK that I have been dealing with the situation now for nearly three years. I told them today about the RN who turned, tore off her gown and ran away at the sight of blood three days ago. "One of our nurses her on the eleventh floor?" "Yes," I replied. It is very stressful being there and not being able to help anymore. We have to hope for a miracle now, the doctors and nurses have now done everything humanly possible to save her.
Sincerely
Joe
Saturday, October 24, 2009
ICU ... Again
Dear Colleen,
I have been with Lana for the past seven days day and nights. Some of the RNs are competent and caring, others are only in nursing to follow all the rules and for the money. I caught both doctors and nurses making life and death mistakes this week.
Lana had been bleeding from her nose for two days and I asked for platelets. The answer was that she had 45 and did not warrant them. The next day a nursing assistant looked in her mouth with his flashlight and her entire mouth cavity was filled with bloody mucus which had the consistency of tar. She failed the swallowing test and also was unable to speak. They ordered a CT scan of her head which showed nothing. Not even her doctor or any of her RNs thought to look in her mouth.
They sent her to the intensive care unit and the RN there put her blood pressure cuff on incorrectly and was getting readings above 190/--. The cuff was timed to inflate every 15 minutes. The next time the cuff inflated I noticed that even full of air it wasn't touching her skin so of course she always got the highest reading it was pumped to. I brought it to her attention and she redid it. The next cycle read 158/-- and the following was 136/67. I informed the RN that these were her usual numbers. She threw me out of the ICU but while I was leaving I ordered her to correct the erroneous readings in her chart. I doubt that she did.
Lana is not able to speak and sleeps most of the time. She still has no white blood cells. The reading is 0.0. Her hope for recovery lies in her body's ability to begin making white blood cells. She has no fever but still has pneumonia.
One of her doctors resents my being there. His comment to me the other morning was, "You're here again!" He was not the doctor in charge who cares very much for my input.
Yesterday Lana was visited by the head doctor and eight assistants who were RN and MD interns. I had equal say with all of them and they made certain that my concerns were immediately acted on. They now clean her mouth out at least twice a day with a special suction device. It is easy if the blood is still less than a day old otherwise it becomes very thick and hard to remove.
I am still hopeful that what I am seeing is just "chemobrain" and not permanent mental impairment. It always takes two people to handle her and turn her and keep her clean. On several occasions she did lie wet for several hours. She has severe rashes on her back and genital area. You can see the value of my staying there 24 hours a day. They all know that they are being watched. Had I only gone twice a week for an hour or so I truly believe she would have died.
Joe
I have been with Lana for the past seven days day and nights. Some of the RNs are competent and caring, others are only in nursing to follow all the rules and for the money. I caught both doctors and nurses making life and death mistakes this week.
Lana had been bleeding from her nose for two days and I asked for platelets. The answer was that she had 45 and did not warrant them. The next day a nursing assistant looked in her mouth with his flashlight and her entire mouth cavity was filled with bloody mucus which had the consistency of tar. She failed the swallowing test and also was unable to speak. They ordered a CT scan of her head which showed nothing. Not even her doctor or any of her RNs thought to look in her mouth.
They sent her to the intensive care unit and the RN there put her blood pressure cuff on incorrectly and was getting readings above 190/--. The cuff was timed to inflate every 15 minutes. The next time the cuff inflated I noticed that even full of air it wasn't touching her skin so of course she always got the highest reading it was pumped to. I brought it to her attention and she redid it. The next cycle read 158/-- and the following was 136/67. I informed the RN that these were her usual numbers. She threw me out of the ICU but while I was leaving I ordered her to correct the erroneous readings in her chart. I doubt that she did.
Lana is not able to speak and sleeps most of the time. She still has no white blood cells. The reading is 0.0. Her hope for recovery lies in her body's ability to begin making white blood cells. She has no fever but still has pneumonia.
One of her doctors resents my being there. His comment to me the other morning was, "You're here again!" He was not the doctor in charge who cares very much for my input.
Yesterday Lana was visited by the head doctor and eight assistants who were RN and MD interns. I had equal say with all of them and they made certain that my concerns were immediately acted on. They now clean her mouth out at least twice a day with a special suction device. It is easy if the blood is still less than a day old otherwise it becomes very thick and hard to remove.
I am still hopeful that what I am seeing is just "chemobrain" and not permanent mental impairment. It always takes two people to handle her and turn her and keep her clean. On several occasions she did lie wet for several hours. She has severe rashes on her back and genital area. You can see the value of my staying there 24 hours a day. They all know that they are being watched. Had I only gone twice a week for an hour or so I truly believe she would have died.
Joe
Sunday, October 18, 2009
Together Again...
Joe (Dad) called yesterday to wish me a happy birthday and tell me about a early birthday gift for himself...
Turns out that at MD Anderson they have hideaway beds right in the patients rooms so that the caregivers can stay with them. So for a inexpensive $12 a night Dad can stay with Lana even in isolation (but not in the ICU). This is because he is her primary caregiver (although if he gets the sniffles he's outta there!) That $12 in addition to $10 in good cheap cafeteria food and he's still saving money over driving back and forth or staying with their friend's daughter 20 miles away.
This will make everyday living much easier on both of them. Lana is bed-ridden at this point and unable to work on her crafts, answer the phone, etc. Not a fun time to say the least. But her health does seem to be slowly improving.
We'll keep you all posted on her progress. Thank you for your prayers and well wishes.
Colleen
Turns out that at MD Anderson they have hideaway beds right in the patients rooms so that the caregivers can stay with them. So for a inexpensive $12 a night Dad can stay with Lana even in isolation (but not in the ICU). This is because he is her primary caregiver (although if he gets the sniffles he's outta there!) That $12 in addition to $10 in good cheap cafeteria food and he's still saving money over driving back and forth or staying with their friend's daughter 20 miles away.
This will make everyday living much easier on both of them. Lana is bed-ridden at this point and unable to work on her crafts, answer the phone, etc. Not a fun time to say the least. But her health does seem to be slowly improving.
We'll keep you all posted on her progress. Thank you for your prayers and well wishes.
Colleen
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