July 30 630 am
I stayed the night with mom last night. She appears very tired. She moans with almost every breath out. She is having no pain except in her mouth. She is difficult to rouse at times. She has gone from drinking water every 20 minutes to a few times in an 8 hour shift. Her Morphine drip is still at a minuscule 0.2mg per hour. Yesterday she said she was short of breath (SOB) when asked , so we raised her oxygen (O2) from 4L to 6L/minute. We are not checking vital signs- Blood Pressure, Pulse, Respirations , Temperature or O2 Saturation- so we don't know any numbers. We are just keeping her comfortable. When I count resps they are about 22. Normal is around 12-16 per minute.
The nurses are turning her every 2 hours, and doing mouth care. They are assessing her pain level, lung sounds and mouth sores. They are taking very good care of her - and us. I am so grateful for the caliber of nurses that I work with. I know this is not just because she is my mother but because of the compassionate, loving, caring people that they are.
Paul will be here today, and Keith tomorrow. Scot may be here today.
I believe it will be just days before she passes to be with Dad (Lloyd). I am sad, but she does not want to live like this. She does not want to be a burden.
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Hope or last hurrah?
July 29th 1030am
Mom is still with us. We are glad and surprised. Last night she was singing until about 2 am.
Dr Rose was very surprised yesterday that she was doing so well, still alert and talking to people. The doctor had labs drawn. Mom's BNP (the lab for congestive heart failure or CHF) was down to 981!! Normal is 0-99. It was >5000 on Saturday when we made her comfort care. Dr Rose said that Morphine drip should be standard treatment for all people with CHF. She is cautiously optimistic that mom MIGHT be able to come home, IF she continues to do well. But said, IF she comes home she would only live about 2 months or less. So we all hoping for the best, but trying not to expect it, as sometimes patients seem to rally before they pass.
We have been staying with her almost 24/7. Minnie stayed on Saturday night, Maria and Hunter on Sunday night, and Bob and Shaunna last night. Someone is there almost all the time during the day and evening. Usually more than one. I am at the hospital now and April will be back here in a few minutes.
We are arranging for Keith and Paul to come to see her as neither will be able to come to the funeral. Keith will be here on Thursday for about 1/2-1 hour. We are still making arrangements for Paul.
We appreciated all the prayers and good wishes.
Bonnie
Mom is still with us. We are glad and surprised. Last night she was singing until about 2 am.
Dr Rose was very surprised yesterday that she was doing so well, still alert and talking to people. The doctor had labs drawn. Mom's BNP (the lab for congestive heart failure or CHF) was down to 981!! Normal is 0-99. It was >5000 on Saturday when we made her comfort care. Dr Rose said that Morphine drip should be standard treatment for all people with CHF. She is cautiously optimistic that mom MIGHT be able to come home, IF she continues to do well. But said, IF she comes home she would only live about 2 months or less. So we all hoping for the best, but trying not to expect it, as sometimes patients seem to rally before they pass.
We have been staying with her almost 24/7. Minnie stayed on Saturday night, Maria and Hunter on Sunday night, and Bob and Shaunna last night. Someone is there almost all the time during the day and evening. Usually more than one. I am at the hospital now and April will be back here in a few minutes.
We are arranging for Keith and Paul to come to see her as neither will be able to come to the funeral. Keith will be here on Thursday for about 1/2-1 hour. We are still making arrangements for Paul.
We appreciated all the prayers and good wishes.
Bonnie
Saturday, July 26, 2008
Dying
July 26 11am
Mom's heart is giving out. We have made the decision to make her comfort care. She will probably pass in a few days. The funeral will probably be at the LDS Church on 176th in Puyallup/Spanaway area. Obviously I don't have a date and time yet so I will post that when I have it.
She is lucid again, after getting a day's sleep. She knows who we are and can answer simple questions and carry on very short conversations.
Please keep us all in yours prayers.
Bonnie
Mom's heart is giving out. We have made the decision to make her comfort care. She will probably pass in a few days. The funeral will probably be at the LDS Church on 176th in Puyallup/Spanaway area. Obviously I don't have a date and time yet so I will post that when I have it.
She is lucid again, after getting a day's sleep. She knows who we are and can answer simple questions and carry on very short conversations.
Please keep us all in yours prayers.
Bonnie
Thursday, July 24, 2008
An Outsiders View
Hi Everyone. This is Rachel.
I flew in on Tuesday for "vacation". What was supposed to be an enjoyable vacation has quickly become one of sadness with the inevitable knowledge that this will be the last bit of time that I spend with Nana before , as she terms it, goes home.
If you haven't seen Nana lately, the shock factor is enormous. The bruising on her face from her fall is bad, but it is the confusion, hallucinations, uncontrolled body movements, incontinence and basic mental disconnect that make it hard to even recognize her as a the vibrant, funny, active woman that she has been her entire life.
Bonnie, my mother, has seen the gradual decline in the past few months and has had time to acclimate. Even she is disturbed at how quickly Nana has gone downhill in the past week. It's as if her Alzheimer's has gone from zero to sixty within a week.
She is able to recognize loved ones, but she quickly fades back into her confusion, frequently referring to Lloyd, her husband who passed in the early 1980's. She constantly sees bugs on the walls and often talks about babies and a little girl who is in the room that only she can see. She insists on getting out of the bed to use the toilet about every 5 minutes. Because she is extremely unsteady on her feet and will fall without assistance, they decided to put a catheter back in and also may have to add a restraint system that prevents her from getting out of the bed without constricting her movements in the bed during the night. Laymans terms for the restraints is a posey vest (sp).
Without having a lot of medical knowledge, it seems that her time with us will be shorter than any of us had hoped. Even if her body is alive, her mind is quickly going. She hasn't lost her stubborness though. She is argumentative and rarely will listen the first time. She has to be told multiple times to do even the simplest of tasks. The penchant for pulling her oxygen tubes and IV's is a constant cause for frustration.
Nana is constantly moving. Shaking, wiggling, shivering it seems that she is always moving. Her legs jerk a lot and I tell her that her feet are happy and trying to dance. I will get an occasional smile when I tell her that. Some of the movement are reminicent of Parkinson's but she doesn't have that. They don't know why she is so shaky.
Devon is scared to see her. Although he has been here a few times it makes him sad and he cries when he leaves. He knows that this is the last time that he will see her but it is very upsetting for him to see his Nana so sick. He says that he finds comfort knowing that God will take her to a better place and that she won't hurt anymore.
As much as I have tried to accurately describe what it is like to see her, nothing will really prepare you. You might want to come see her sooner rather than later. It seems to get worse and worse every day.
I flew in on Tuesday for "vacation". What was supposed to be an enjoyable vacation has quickly become one of sadness with the inevitable knowledge that this will be the last bit of time that I spend with Nana before , as she terms it, goes home.
If you haven't seen Nana lately, the shock factor is enormous. The bruising on her face from her fall is bad, but it is the confusion, hallucinations, uncontrolled body movements, incontinence and basic mental disconnect that make it hard to even recognize her as a the vibrant, funny, active woman that she has been her entire life.
Bonnie, my mother, has seen the gradual decline in the past few months and has had time to acclimate. Even she is disturbed at how quickly Nana has gone downhill in the past week. It's as if her Alzheimer's has gone from zero to sixty within a week.
She is able to recognize loved ones, but she quickly fades back into her confusion, frequently referring to Lloyd, her husband who passed in the early 1980's. She constantly sees bugs on the walls and often talks about babies and a little girl who is in the room that only she can see. She insists on getting out of the bed to use the toilet about every 5 minutes. Because she is extremely unsteady on her feet and will fall without assistance, they decided to put a catheter back in and also may have to add a restraint system that prevents her from getting out of the bed without constricting her movements in the bed during the night. Laymans terms for the restraints is a posey vest (sp).
Without having a lot of medical knowledge, it seems that her time with us will be shorter than any of us had hoped. Even if her body is alive, her mind is quickly going. She hasn't lost her stubborness though. She is argumentative and rarely will listen the first time. She has to be told multiple times to do even the simplest of tasks. The penchant for pulling her oxygen tubes and IV's is a constant cause for frustration.
Nana is constantly moving. Shaking, wiggling, shivering it seems that she is always moving. Her legs jerk a lot and I tell her that her feet are happy and trying to dance. I will get an occasional smile when I tell her that. Some of the movement are reminicent of Parkinson's but she doesn't have that. They don't know why she is so shaky.
Devon is scared to see her. Although he has been here a few times it makes him sad and he cries when he leaves. He knows that this is the last time that he will see her but it is very upsetting for him to see his Nana so sick. He says that he finds comfort knowing that God will take her to a better place and that she won't hurt anymore.
As much as I have tried to accurately describe what it is like to see her, nothing will really prepare you. You might want to come see her sooner rather than later. It seems to get worse and worse every day.
Tuesday, July 22, 2008
MRSA
July 22 245pm
Mom has MRSA in her sputum. That is a bacteria that is resistant to a lot of antibiotics. No wonder she isn't getting better very quickly. So they are starting her on Vancomycin. Her urine and blood cultures do not show MRSA so far. She is in respiratory and contact isolation. I have to wear a gown, gloves and mask when I am in her room.
Mom has had nausea and vomiting today. We gave her Phenergan and compazine. Now she is confused and picking at things. But the nausea is gone. She is not having pain unless we move her.
Platelets are decreasing. So tomorrow she will probably get platelets. They help prevent bleeding. So far no bleeding noted.
She is getting IV Calcium and IV Potassium daily. Her CHF labs went back up today. So she is still very fragile.
The bruises are starting to turn yellow.
We will NOT be coming to the reunion.
Bonnie
Mom has MRSA in her sputum. That is a bacteria that is resistant to a lot of antibiotics. No wonder she isn't getting better very quickly. So they are starting her on Vancomycin. Her urine and blood cultures do not show MRSA so far. She is in respiratory and contact isolation. I have to wear a gown, gloves and mask when I am in her room.
Mom has had nausea and vomiting today. We gave her Phenergan and compazine. Now she is confused and picking at things. But the nausea is gone. She is not having pain unless we move her.
Platelets are decreasing. So tomorrow she will probably get platelets. They help prevent bleeding. So far no bleeding noted.
She is getting IV Calcium and IV Potassium daily. Her CHF labs went back up today. So she is still very fragile.
The bruises are starting to turn yellow.
We will NOT be coming to the reunion.
Bonnie
Update
July 21 Midnight
A rough 2 days for mom. She had a power port placed on Saturday night. That is an IV access placed just under the skin of her upper chest near the shoulder. A needle goes into the port. The needle only has to be changed out every 7 days. They can draw most of her labs through the port. They can also give all her IV medicines through it. She also has a peripheral access line.
Today she got 4 small bags of minerals to replace the ones she is deficient in - Magnesium, Calcium, Sodium with Phosphorus, and Potassium. She also got 2 more units of blood. Also she got her IV antibiotic, Levaquin. They stopped the IV with Sodium Bicarb because the Tumor Lysis is resolving nicely. And they stopped the diflucan and allopurinol yesterday.
She is severely malnourished. She is so weak that I have to feed her. The effort to feed herself takes too much energy so she doesn't eat. She doesn't eat enough even when I feed her. We changed her diet from soft foods, to chopped foods to blenderized liquids.
Thanks for the cards. She appreciates them all. April visited today. Mom didn't say much but I know she enjoyed having her there. Stephen, Jean and Meg visited Sunday. She won't be coming to the family reunion this Saturday. I hope she is out of the hospital by then. She needs a lot of assistance to even get out of the bed. And she hasn't walked more than a step or two to the chair.
A rough 2 days for mom. She had a power port placed on Saturday night. That is an IV access placed just under the skin of her upper chest near the shoulder. A needle goes into the port. The needle only has to be changed out every 7 days. They can draw most of her labs through the port. They can also give all her IV medicines through it. She also has a peripheral access line.
Today she got 4 small bags of minerals to replace the ones she is deficient in - Magnesium, Calcium, Sodium with Phosphorus, and Potassium. She also got 2 more units of blood. Also she got her IV antibiotic, Levaquin. They stopped the IV with Sodium Bicarb because the Tumor Lysis is resolving nicely. And they stopped the diflucan and allopurinol yesterday.
She is severely malnourished. She is so weak that I have to feed her. The effort to feed herself takes too much energy so she doesn't eat. She doesn't eat enough even when I feed her. We changed her diet from soft foods, to chopped foods to blenderized liquids.
Thanks for the cards. She appreciates them all. April visited today. Mom didn't say much but I know she enjoyed having her there. Stephen, Jean and Meg visited Sunday. She won't be coming to the family reunion this Saturday. I hope she is out of the hospital by then. She needs a lot of assistance to even get out of the bed. And she hasn't walked more than a step or two to the chair.
Saturday, July 19, 2008
Tumor Lysis
July 19th 1pm
Hi All,
Mom is doing better today. Up in a chair for meals. Eating small amounts and stll not hungry but trying. Her labs are better today.
Yesterday Dr. Rose told me that mom has tumor lysis syndrome. That means that the chemo is working so well that it had killed a lot of cancer cells and spilled the contents into the blood stream. It overwhelms the kidneys. She has an IV with a gentle hydration and IV lasix and allopurinol to protect her kidneys.
Today her labs are better. The CHF lab (BNP) was 1680 on Thursday, 1110 yesterday and 980 today. Her Uric Acid was 11.8, 12.8, and today is 9.8 ( that's one of the one for tumor lysis syndrome). Normal is 2.0-6.0 Her calcium is still low but improved. Her Hematocrit was 31 after 2 units of blood and today is 33.5. Her INR is 1.8. Her chest xray has not changed .
She will be getting an implanted Port tonight after 630pm. Then she will not be having so many pokes for IVs and labs.
She will be in the hospital for a few more days according to Dr. Rose, maybe home on Monday or Tuesday. She is still very tired, and very little energy, but she is alert and can carry on a conversation. She has black eyes and a nice lump bruise on the forehead.
April came to visit her yesterday around noon. Bob and Shaunna came at 730pm. They stayed overnight with us and came back to see her today. She got a very nice card from her Dentist's office and all the crew signed it.
If you come to see her in the hospital, do not bring fresh or live flowers. They are not permitted on the floor as the dirt can harbor bacteria and spores.
Bonnie
Hi All,
Mom is doing better today. Up in a chair for meals. Eating small amounts and stll not hungry but trying. Her labs are better today.
Yesterday Dr. Rose told me that mom has tumor lysis syndrome. That means that the chemo is working so well that it had killed a lot of cancer cells and spilled the contents into the blood stream. It overwhelms the kidneys. She has an IV with a gentle hydration and IV lasix and allopurinol to protect her kidneys.
Today her labs are better. The CHF lab (BNP) was 1680 on Thursday, 1110 yesterday and 980 today. Her Uric Acid was 11.8, 12.8, and today is 9.8 ( that's one of the one for tumor lysis syndrome). Normal is 2.0-6.0 Her calcium is still low but improved. Her Hematocrit was 31 after 2 units of blood and today is 33.5. Her INR is 1.8. Her chest xray has not changed .
She will be getting an implanted Port tonight after 630pm. Then she will not be having so many pokes for IVs and labs.
She will be in the hospital for a few more days according to Dr. Rose, maybe home on Monday or Tuesday. She is still very tired, and very little energy, but she is alert and can carry on a conversation. She has black eyes and a nice lump bruise on the forehead.
April came to visit her yesterday around noon. Bob and Shaunna came at 730pm. They stayed overnight with us and came back to see her today. She got a very nice card from her Dentist's office and all the crew signed it.
If you come to see her in the hospital, do not bring fresh or live flowers. They are not permitted on the floor as the dirt can harbor bacteria and spores.
Bonnie
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