I sincerely want to thank everyone who came to the condo to express their condolences. It was a pleasure to see how much Boone was appreciated by his co-workers, clients, consultants, and friends.
At the visitation $4, 470 was raised to benefit the Sarah Cannon Cancer Center for Blood Disorders.
I cannot thank those of you enough who donated. For those that took flyers, please remember to send your donations To Sarah Cannon in Boone's name.
Anyone else wishing to, should send their donations to the address listed in the prior post.
In my reading, it seems they are very close to finding a cure for Leukemias and Lymphomas, and other cancers. There is very promising research being done on mice that may well transfer to humans in the near future.
So please, help all you can. Either by becoming a Stem Cell Donor or by donating money for research.
Thank you so very much.
Showing posts with label BONE MARROW TRANSPLANT. Show all posts
Showing posts with label BONE MARROW TRANSPLANT. Show all posts
Monday, August 12, 2013
Visitation Register
Please send donations in Boone's name to:
Dr. Michael Savona, MD, FACP c/o
Sarah Cannon Cancer Center for Blood Disorders
250 25th Avenue North
The Atrium Suite 412
Nashville, TN 37203
Please use the comment section for visitation.
Dr. Michael Savona, MD, FACP c/o
Sarah Cannon Cancer Center for Blood Disorders
250 25th Avenue North
The Atrium Suite 412
Nashville, TN 37203
DAVID BOONE GREGORY
January 15, 1953 - August 5, 2013
Tuesday, August 6, 2013
Final Arrangements
We've had some plan changes since I started telling everyone that visitation would be at Woodlawn.
After finding out that Woodlawn wanted almost $5,000 to cremate Boone plus fees, of course, for the rooms that were higher than any 5 star hotel charges. I think it's criminal to charge such fees when people are distraught and maybe are not experienced in such things. But unfortunately for them, I have experience in such things. Daddy's cremation cost was about $700.
My "Other Husband" got on the Internet and found an Honest Funeral home; one fair with their pricing. For those of you in the Nashville area, and you find yourself in need, please check out Highland Hills Funeral Home on Brick Church Pike. They are going to go to Woodlawn to pick up Boone's body, provide the container to move him in a dignified manor, refrigeration, cremate his body, and provide an appropriate vinyl box for his ashes for $695 + tax. Pretty damn fair. Very professional. The Obituary will run in the Thursday edition of the Nashville Tennessean, and the next issue of the Portland (TN) Leader.
Needless to say, we are not going to do Woodlawn at all. Not being cheap, just trying not to be stupid.
Boone had two things that he wanted. 1) to see the critters, and 2) to get back to the condo.
Bless Harold, he brilliantly thought of having the visitation at the condo. Boone will get one of his final wishes, his ashes will be at the condo for visitation with family and friends.
Visitation will occur between 4 & 8 PM Thursday and Friday evening at our condo.
The address is:
700 12th Avenue South
Terrazzo Building
Unit 1511
37203
Boone's ashes will be, as requested, "blown up". Friends and family are invited to gather on July 3rd, 2014, at the farm, barring some catastrophic event. We will celebrate his life and offer him a farewell toast with the biggest firework I can get, even if I have to hire a professional company to launch him.
In lieu of flowers, we are going to have a collection bowl for donations to the Sarah Cannon Caner Center for Blood Disorders at the visitations. SCCC paid for all of Boone's treatments, drugs, everything beyond our OOP deductible. I have no idea what the final tab will be, but it could easily over $3 million. I understand that the transplant alone runs about $1M. I hope to hand deliver the donations to Dr. S. so that they may continue their good work.
If you live outside of Nashville, donations may be mailed to:
Sarah Cannon Center for Blood Disorders
250 25th Ave North
Nashville, TN 37203
Please indicate that your donation is for Boone. (And if all you know is "Boone", they will know who it's for.)
The doctors, nurses, techs, specialists of all kinds, even the housekeeping staff are the best I've ever seen. Not a slouch in the bunch. They are amazing people doing incredibly difficult work. They get attached to their patients, they know their friends and their families. They shared their stories with us and we got to know them as friends. I know I will miss these wonderful people.
After finding out that Woodlawn wanted almost $5,000 to cremate Boone plus fees, of course, for the rooms that were higher than any 5 star hotel charges. I think it's criminal to charge such fees when people are distraught and maybe are not experienced in such things. But unfortunately for them, I have experience in such things. Daddy's cremation cost was about $700.
My "Other Husband" got on the Internet and found an Honest Funeral home; one fair with their pricing. For those of you in the Nashville area, and you find yourself in need, please check out Highland Hills Funeral Home on Brick Church Pike. They are going to go to Woodlawn to pick up Boone's body, provide the container to move him in a dignified manor, refrigeration, cremate his body, and provide an appropriate vinyl box for his ashes for $695 + tax. Pretty damn fair. Very professional. The Obituary will run in the Thursday edition of the Nashville Tennessean, and the next issue of the Portland (TN) Leader.
Needless to say, we are not going to do Woodlawn at all. Not being cheap, just trying not to be stupid.
Boone had two things that he wanted. 1) to see the critters, and 2) to get back to the condo.
Bless Harold, he brilliantly thought of having the visitation at the condo. Boone will get one of his final wishes, his ashes will be at the condo for visitation with family and friends.
Visitation will occur between 4 & 8 PM Thursday and Friday evening at our condo.
The address is:
700 12th Avenue South
Terrazzo Building
Unit 1511
37203
Boone's ashes will be, as requested, "blown up". Friends and family are invited to gather on July 3rd, 2014, at the farm, barring some catastrophic event. We will celebrate his life and offer him a farewell toast with the biggest firework I can get, even if I have to hire a professional company to launch him.
In lieu of flowers, we are going to have a collection bowl for donations to the Sarah Cannon Caner Center for Blood Disorders at the visitations. SCCC paid for all of Boone's treatments, drugs, everything beyond our OOP deductible. I have no idea what the final tab will be, but it could easily over $3 million. I understand that the transplant alone runs about $1M. I hope to hand deliver the donations to Dr. S. so that they may continue their good work.
If you live outside of Nashville, donations may be mailed to:
Sarah Cannon Center for Blood Disorders
250 25th Ave North
Nashville, TN 37203
Please indicate that your donation is for Boone. (And if all you know is "Boone", they will know who it's for.)
The doctors, nurses, techs, specialists of all kinds, even the housekeeping staff are the best I've ever seen. Not a slouch in the bunch. They are amazing people doing incredibly difficult work. They get attached to their patients, they know their friends and their families. They shared their stories with us and we got to know them as friends. I know I will miss these wonderful people.
Monday, August 5, 2013
The End has Come
Dear friends, it is with great sorrow that I tell you of Boone's passing today. I'm experiencing gaps in my memory, so please understand if I get something backward.
Saturday he had a setback where he was unable to hold his O2 level above 90. He was put on a mechanical respirator that forced air into his lungs. After a while it was taken off to see if he could hold his oxygen level. He did fine for a while, then it started dropping into the mid 80's. They put him on normal O2 set at its maximum level. That was ok for a few hours, but then his oxygen level started dropping again. They put the mask respirator back on him.
Sunday morning I arrived earlier than normal to find the rapid response team in his room. They were stabilizing his oxygen again. I'm not really clear on exactly what happened, but Dr. B. was there and asked me what I wanted to do. Te question stunned me. When asked if this was a life and death decision and he said yes. The options were to send him to the ICU to have a ventilator put on him, and no doubt be tied down; which he hated, leave him in the ward on the respirator, or I think send him to Hospice. All I said was that I wanted him to stay on the ward. They would not restrain him the way the ICU would, and no telling what all tests the ICU doctors would want to do...It's more of a fog to me now. There were so many people in his room and so much urgency. I had no idea what I was walking into when I arrived. I expected him to be in bad shape, but certainly did not expect this.
Dr. B. turned around and said "DNR". Several people talked to me about what was happening, but honestly, I don't remember much of it, other than he now had an infection in his lungs and lots of fluid. They were going to give him Lasix, an anti seizure drug, and other drugs for palliative care. I asked Dr. B what was causing the horrible pain in Boone's knees that the pain meds were not controlling. He said it was because Boone's blood flow was no longer reaching the parts of the knee and so the cells were dying, and said it is excruciatingly painful.
Boone was semi conscious all that day. That evening Boone's brother and I discussed his situation and decided to ask Dr. S. on Monday morning if we could stop the respirator. If Boone had an infection, then that was pretty much the end of the line. I had been told this many times. His immune system couldn't fight off any infection of any kind.
Monday morning Dr. H the infection control Dr. came in and told me that all of Boone's organs had or were failing. Boone had not passed anything through his ostomy bag in 3 days, his urine was almost black, his skin was still getting more yellow, and now he has a gram negative infection in his lungs. I asked her if taking him off the respirator was the right thing to do, and she agreed that it was.
It was Dr. S's. first day back from his vacation. He heard something was up with Boone so after he did his clinic rounds he came to Boone's room. He didn't know what exactly was going on because the last reports he had heard Boone was doing pretty well. We asked him if we could remove the respirator. He was obviously shocked at the question, and "no" was the answer. He said he would do his rounds and be back around noon. At about 9 o'clock he came back in the room; he had talked to the nurses, looked at the charts, discussed it with Dr. B, and said yes it's time.
Boone's brother called their youngest sister that lives nearby. It was going to take her a few hours to get to the hospital. We told the staff we wanted to wait for her to arrive before we did anything. In those few hours, his closest friends from work came by. We went out into the corridor while they said their goodbyes. I could hear them laughing and talking. Boone could hear them too. Maybe he was laughing with them inside.
Nurses from other shifts had heard he was in bad shape and came to say how much they liked him and to shed tears with us, rub his arm, and tell him how much they enjoyed having him as a patient. Of course the ladies from Housekeeping came by with big hugs and tears.
When Boone's sister arrived we were pretty much left alone in the room to say our goodbyes. After many tears fell I went out and told the nurses we were ready. After a few minutes they came in and said they needed to bathe him and get him ready. Everyone excused themselves but me. Together we gave Boone his last bath. I washed his feet and one leg and one arm. It was deeply moving to get this privilege to do this for him one last time. As we rolled him to clean his back and change the bed pad under him he cried out in pain and fear. It was an awful sound. He was heavily drugged and still was screaming from the pain. It was then that I knew for sure we were doing the right thing. He was given another injection of Dilaudid, and then an anti anxiety drug so he wouldn't react when the respirator mask was removed. I asked for 10 minutes alone with him before they called the rest of the family back. After 20 minutes, I called the nurse to tell her I was ready. The rest of the family was brought back in and the nurses began the procedure. The mask was removed and Boone reached up to grab it and began to gasp for air.
We had been told it wouldn't take more than 10 minutes, but stubborn as he always was, he took about 30 to take in his last breath. Dr. S. came in and listened for a heart beat, found none, consoled us and left us with Boone's body.
I think most everyone left the room while I sat there holding Boone's hand. As the minutes went by, he became colder, more yellow, and his face muscles relaxed into a smile.
We cleaned out his room of his personal belongings, stayed as long as we could before the nurses had to prep him for the funeral home to come pick him up.
I kissed his head one last time and told him I loved him.
Saturday he had a setback where he was unable to hold his O2 level above 90. He was put on a mechanical respirator that forced air into his lungs. After a while it was taken off to see if he could hold his oxygen level. He did fine for a while, then it started dropping into the mid 80's. They put him on normal O2 set at its maximum level. That was ok for a few hours, but then his oxygen level started dropping again. They put the mask respirator back on him.
Sunday morning I arrived earlier than normal to find the rapid response team in his room. They were stabilizing his oxygen again. I'm not really clear on exactly what happened, but Dr. B. was there and asked me what I wanted to do. Te question stunned me. When asked if this was a life and death decision and he said yes. The options were to send him to the ICU to have a ventilator put on him, and no doubt be tied down; which he hated, leave him in the ward on the respirator, or I think send him to Hospice. All I said was that I wanted him to stay on the ward. They would not restrain him the way the ICU would, and no telling what all tests the ICU doctors would want to do...It's more of a fog to me now. There were so many people in his room and so much urgency. I had no idea what I was walking into when I arrived. I expected him to be in bad shape, but certainly did not expect this.
Dr. B. turned around and said "DNR". Several people talked to me about what was happening, but honestly, I don't remember much of it, other than he now had an infection in his lungs and lots of fluid. They were going to give him Lasix, an anti seizure drug, and other drugs for palliative care. I asked Dr. B what was causing the horrible pain in Boone's knees that the pain meds were not controlling. He said it was because Boone's blood flow was no longer reaching the parts of the knee and so the cells were dying, and said it is excruciatingly painful.
Boone was semi conscious all that day. That evening Boone's brother and I discussed his situation and decided to ask Dr. S. on Monday morning if we could stop the respirator. If Boone had an infection, then that was pretty much the end of the line. I had been told this many times. His immune system couldn't fight off any infection of any kind.
Monday morning Dr. H the infection control Dr. came in and told me that all of Boone's organs had or were failing. Boone had not passed anything through his ostomy bag in 3 days, his urine was almost black, his skin was still getting more yellow, and now he has a gram negative infection in his lungs. I asked her if taking him off the respirator was the right thing to do, and she agreed that it was.
It was Dr. S's. first day back from his vacation. He heard something was up with Boone so after he did his clinic rounds he came to Boone's room. He didn't know what exactly was going on because the last reports he had heard Boone was doing pretty well. We asked him if we could remove the respirator. He was obviously shocked at the question, and "no" was the answer. He said he would do his rounds and be back around noon. At about 9 o'clock he came back in the room; he had talked to the nurses, looked at the charts, discussed it with Dr. B, and said yes it's time.
Boone's brother called their youngest sister that lives nearby. It was going to take her a few hours to get to the hospital. We told the staff we wanted to wait for her to arrive before we did anything. In those few hours, his closest friends from work came by. We went out into the corridor while they said their goodbyes. I could hear them laughing and talking. Boone could hear them too. Maybe he was laughing with them inside.
Nurses from other shifts had heard he was in bad shape and came to say how much they liked him and to shed tears with us, rub his arm, and tell him how much they enjoyed having him as a patient. Of course the ladies from Housekeeping came by with big hugs and tears.
When Boone's sister arrived we were pretty much left alone in the room to say our goodbyes. After many tears fell I went out and told the nurses we were ready. After a few minutes they came in and said they needed to bathe him and get him ready. Everyone excused themselves but me. Together we gave Boone his last bath. I washed his feet and one leg and one arm. It was deeply moving to get this privilege to do this for him one last time. As we rolled him to clean his back and change the bed pad under him he cried out in pain and fear. It was an awful sound. He was heavily drugged and still was screaming from the pain. It was then that I knew for sure we were doing the right thing. He was given another injection of Dilaudid, and then an anti anxiety drug so he wouldn't react when the respirator mask was removed. I asked for 10 minutes alone with him before they called the rest of the family back. After 20 minutes, I called the nurse to tell her I was ready. The rest of the family was brought back in and the nurses began the procedure. The mask was removed and Boone reached up to grab it and began to gasp for air.
We had been told it wouldn't take more than 10 minutes, but stubborn as he always was, he took about 30 to take in his last breath. Dr. S. came in and listened for a heart beat, found none, consoled us and left us with Boone's body.
I think most everyone left the room while I sat there holding Boone's hand. As the minutes went by, he became colder, more yellow, and his face muscles relaxed into a smile.
We cleaned out his room of his personal belongings, stayed as long as we could before the nurses had to prep him for the funeral home to come pick him up.
I kissed his head one last time and told him I loved him.
Friday, August 2, 2013
It Was Tuesday Morning
It was the day after the chat I had in the corridor with Dr. B. that Boone wasn't supposed to see.
Since March 16, 2012, I've been researching CMML, transplants, prognosis's and treatment options. None of the information I found was good news. Maybe that's why I kept searching, in hopes of finding something that was newer, more promising. I did find the dandelion root extract which seemed to be the cause of Boone's blood work going into normal numerical ranges, even though his DNA was very messed up.
After the transplant, I did the same; searched the world over looking for post transplant outcomes, GVHD, protocols for it, and as before there was no good news. Like before, the later the studies were the worse the news became because of better record keeping and separating CMML from other myelodysplastic or proliferative disorders. CMML is the mother of all bitches.
Stubborn as Boone is, he beat the odds. His transplant engrafted 100%. 95% is considered complete. His PV samples, his bone marrow biopsy, and his spinal tap all were 100% donor cells. Then the GVHD happened and as you know, none of the protocols worked. Odds get really bad when the steroids in the first round don't control it. Odds get worse with each passing protocol with no response.
In all my research I couldn't find anything that the doctors had not tried; and they had had tried each in the apparent proper order. On Monday when Dr. B. frankly said he would have to do some research, I knew he was into territory where I don't have access. Thus Boone saw me in the hall asking questions, I couldn't ask in front of him.
As you know, Boone saw and asked, and I couldn't lie to him.
The rest of the day and evening for me was something beyond depressing, the feeling of loss and hopelessness overcame me.
Tuesday morning as I drove into town to see Boone, I called a few friends; no answers, no one to talk to. There were others I could have called, but after the 3rd attempt at getting our oldest friends, I was crying, sobbing loudly in the traffic. I couldn't seem to stop. The waves of tears just kept coming.
When I arrived that the Cancer Center, I was trying my best to vacuum the tears back into my eyes and get my face straightened out enough to be able to go into Boone's room smiling. I did fairly well through the lobby, but felt people were looking at me the same way they did at the CCU in Atlanta when Momma died. They know that face, that feeling, and are all hoping it doesn't come to roost with them. They just silently watch you pass by; all conversations put on hold.
After exiting the elevator and sterilizing my hands I hit the automatic door opener. The double doors swung open without a sound, and there just on the other side were the two housekeepers that have always been great about cheering things up. They saw that face. They know it well. They see it much too often.
Deschelle grabbed me and hugged me tight, "what's wrong baby?" I told her the prognosis from Dr. B.
Rose was within ear shot and came over to give me a big hug. "You can't go in there looking like that". She was right, I couldn't I had to get my act together before I walked into his room. My plan was to sit in the corridor until I could get it together.
But Rose and Deschelle (Sorry I know that's not the correct spelling) are experienced at making the worst of times into tolerable times. Times where you can smile and even laugh out loud. Rose told me to come on with her, she was going to dance her way into that room. And so she started shaking that booty for all it was worth. I got to laughing at her just as she flung his door open and sashayed in dancing all the way. She had gotten me into his room with a big smile on my face. Boone was laughing. Then here came Deschelle, who is always messing with Boone, and "sees" Rose dancing and proceeds to attempt to out dance her. By that time, I had to join in. So there we three were shaking our booties. Even tough I ain't got no rhythm; Boone was totally enjoying every second of it. He was grinning from ear to ear.
Just as we were getting good and wound up, in came the lady from Food Services with breakfast. She saw there was a party going on and began shaking that ass, shaking that ass. She had no idea what was going on but made it go over the top. We were doing Tina before it was over.
And so they each departed leaving me alone with Boone with a big grin on my face that I was able to hold on to for as long as I was there.
Ladies, thank you so much for caring, for giving everything you have, and for shaking that ass. You all deserve a big raise. You certainly have earned more stars in your crowns.
I hope the doctors know how much these ladies do for their patients and their families. They are at their best in the worst of times. Cleaning is the least (even though they are very diligent about it) of the things they do. Getting us all to laugh is their speciality, and they do it very well.
Shake on.
Kg
Since March 16, 2012, I've been researching CMML, transplants, prognosis's and treatment options. None of the information I found was good news. Maybe that's why I kept searching, in hopes of finding something that was newer, more promising. I did find the dandelion root extract which seemed to be the cause of Boone's blood work going into normal numerical ranges, even though his DNA was very messed up.
After the transplant, I did the same; searched the world over looking for post transplant outcomes, GVHD, protocols for it, and as before there was no good news. Like before, the later the studies were the worse the news became because of better record keeping and separating CMML from other myelodysplastic or proliferative disorders. CMML is the mother of all bitches.
Stubborn as Boone is, he beat the odds. His transplant engrafted 100%. 95% is considered complete. His PV samples, his bone marrow biopsy, and his spinal tap all were 100% donor cells. Then the GVHD happened and as you know, none of the protocols worked. Odds get really bad when the steroids in the first round don't control it. Odds get worse with each passing protocol with no response.
In all my research I couldn't find anything that the doctors had not tried; and they had had tried each in the apparent proper order. On Monday when Dr. B. frankly said he would have to do some research, I knew he was into territory where I don't have access. Thus Boone saw me in the hall asking questions, I couldn't ask in front of him.
As you know, Boone saw and asked, and I couldn't lie to him.
The rest of the day and evening for me was something beyond depressing, the feeling of loss and hopelessness overcame me.
Tuesday morning as I drove into town to see Boone, I called a few friends; no answers, no one to talk to. There were others I could have called, but after the 3rd attempt at getting our oldest friends, I was crying, sobbing loudly in the traffic. I couldn't seem to stop. The waves of tears just kept coming.
When I arrived that the Cancer Center, I was trying my best to vacuum the tears back into my eyes and get my face straightened out enough to be able to go into Boone's room smiling. I did fairly well through the lobby, but felt people were looking at me the same way they did at the CCU in Atlanta when Momma died. They know that face, that feeling, and are all hoping it doesn't come to roost with them. They just silently watch you pass by; all conversations put on hold.
After exiting the elevator and sterilizing my hands I hit the automatic door opener. The double doors swung open without a sound, and there just on the other side were the two housekeepers that have always been great about cheering things up. They saw that face. They know it well. They see it much too often.
Deschelle grabbed me and hugged me tight, "what's wrong baby?" I told her the prognosis from Dr. B.
Rose was within ear shot and came over to give me a big hug. "You can't go in there looking like that". She was right, I couldn't I had to get my act together before I walked into his room. My plan was to sit in the corridor until I could get it together.
But Rose and Deschelle (Sorry I know that's not the correct spelling) are experienced at making the worst of times into tolerable times. Times where you can smile and even laugh out loud. Rose told me to come on with her, she was going to dance her way into that room. And so she started shaking that booty for all it was worth. I got to laughing at her just as she flung his door open and sashayed in dancing all the way. She had gotten me into his room with a big smile on my face. Boone was laughing. Then here came Deschelle, who is always messing with Boone, and "sees" Rose dancing and proceeds to attempt to out dance her. By that time, I had to join in. So there we three were shaking our booties. Even tough I ain't got no rhythm; Boone was totally enjoying every second of it. He was grinning from ear to ear.
Just as we were getting good and wound up, in came the lady from Food Services with breakfast. She saw there was a party going on and began shaking that ass, shaking that ass. She had no idea what was going on but made it go over the top. We were doing Tina before it was over.
And so they each departed leaving me alone with Boone with a big grin on my face that I was able to hold on to for as long as I was there.
Ladies, thank you so much for caring, for giving everything you have, and for shaking that ass. You all deserve a big raise. You certainly have earned more stars in your crowns.
I hope the doctors know how much these ladies do for their patients and their families. They are at their best in the worst of times. Cleaning is the least (even though they are very diligent about it) of the things they do. Getting us all to laugh is their speciality, and they do it very well.
Shake on.
Kg
Tuesday, July 16, 2013
FINGERS CROSSED
Hi, it's the wife.
Going into the hospital this morning I caught the Nurse Practitioner sitting at a work station typing away.
I asked her if these latest events are hopeful; food, no stomach pain, no cramps, and not gushing output, were all the good signs we were looking for. She looked at me, smiled and nodded affirmatively.
When I questioned her about Boone's color, I said it looks to me like he's less yellow. She pulled up his test numbers and said that the bilirubin levels are down, so yes, he would be not quite so yellow.
Then I asked if the GVHD was maybe calming down. She sighed and said we don't know yet.
In Boone's room the long awaited breakfast arrived.
Going into the hospital this morning I caught the Nurse Practitioner sitting at a work station typing away.
I asked her if these latest events are hopeful; food, no stomach pain, no cramps, and not gushing output, were all the good signs we were looking for. She looked at me, smiled and nodded affirmatively.
When I questioned her about Boone's color, I said it looks to me like he's less yellow. She pulled up his test numbers and said that the bilirubin levels are down, so yes, he would be not quite so yellow.
Then I asked if the GVHD was maybe calming down. She sighed and said we don't know yet.
In Boone's room the long awaited breakfast arrived.
Never thought scrambled eggs could be so exciting. Eggs, toast with margarine and mixed fruit jelly, Corn Flakes, and decaf. This was a big day, everyone in the ward was talking about how Boone was getting to eat. Even Rose and Deschel from Housekeeping came by to congratulate him on eating.
Rose wanted her pic taken with "Mr. Gregory", so here it is.
These ladies are the best. They do a great housekeeping job, but more importantly they keep you laughing.
Dr. S and entourage came in. He was smiling; a great big smile. He said the same thing he always says; gonna try this and see how it works. He examined Boone, made him promise not to withhold pain or cramping from them. When he turned to leave Boone's bedside, he cocked his head a bit, looked at me out of the corner of his eye and smiled really big. I think he thinks Boone is getting better.
Tuesday, June 25, 2013
Pauline here. Ok , I guess it's time to come out of the closet; Kathi here. I used "Pauline" in the blog we wrote about my Dad. I was afraid of the Interwebz, and thought it might be more private. Yeah right. Pauline was my Mother's name and is my middle name.
Early this morning I dropped by the Clinic to leave some paperwork and request a meeting with Dr. S.
They said they would text him with a request to call me.
I went to the ICU to see Boone. His color is better, only mildly yellow. His beard and 'stash are growing out pretty fast. The head hair is being slower, but it is coming back too. He was sleeping for the most part so I put my head down on the bed and tried to have a little cat nap.
My phone vibrated, but the call failed. It was a number I didn't have in my contacts. So I left the ICU, went to the main Atrium, and called. It was the clinic, Dr. S. got the message and will call. I explained that in the ICU, I can't get a cell signal anywhere on that floor. Nurse C said, to come on down to the clinic, Dr. S. was there seeing outpatients.
When I arrived they ushered me back to the infusion room. A large room with 4-5 chairs for patients to sit and get infused. I took a seat, and as soon as Dr. S. finished talking to the patient in the next room he came in to talk to me. He scooted his chair up close, knees to knees. I wanted to know where we are what's really going on, and why is there so much conflicting information.
He keeps total eye contact with you when you are talking. He said Boone is in a bad place right now. The spinal tap, or lumbar puncture, is to determine if there is a fungal or bacterial infection in his brain, or another type of Leukemia that sometimes can pop up in the brain. He clearly did not associate the seizure with the photopheresis. He said there appears to be something happening there and we need to find out what's going on. I told him Boone had been hit by a car at age 9 and had a scar on his head in the area they are seeing these "old clots". He just shook his head no. That's not it.
We discussed all the doctors and all the comments they've made that just seem strange and confusing. He in no way denied anything I said. What he told me was first of all, he is in charge. There is no other Dr. including Dr. H the ID doc that can over rule or change his orders. (Yeah!) He acknowledged that it looks like they are not communicating, and it's difficult because they can never all be in the same room at the same time. It's a 24 shift of doctors and rotations, so people can have days off. I totally get that. He said they are in close communication and he would make it clear to them who was in charge and to not make off hand remarks about something. Each, he said, have their own bedside manner and most dumb down what they say to the families. Agreed. They dumb it down so much it doesn't make sense. And that any formal communications to the family would be from Dr. S. to me directly. I think I love this man. When we finished our talk, I felt like it's clear Dr. S. was doing everything he could to help Boone. There is always the future unknown to deal with, but he was in no way confused or indecisive about the corse to be taken.
He said he would see me in the ICU when he made rounds. I explained to him I had to leave by 12:30 because I had friends coming to the condo to help me get the rest of our stuff out. He promised me he would be there in time to see me before I had to go.
Back up in the ICU, I was telling Boone what happened, and said Dr S. had promised to be by in time for me to be here. The nurse in the room laughed out loud.
Boone was awake and alert and making his normal smart ass remarks, in between short rest periods. Ann and I were making another nurse laugh from the stories we were telling. It was a good morning.
Our friend Mike came in to visit. He was there to help me with the moving. Then Dr. S. and his entourage entered the room. It was 12:15. He basically had the same talk with Boone, Ann, Mike, and me that we had earlier. He's in charge. Boone's in a tough spot. He's gonna fix it if he can. All communications are going to be from him to me or Boone directly.
He poked around on Boone, did the normal check up. As he was leaving he said he wanted the catheter removed, mostly because it's exercise for Boone to have to deal with peeing. The lumbar puncture was going to happen, and hopefully Boone will be back on the ward tomorrow, blogging instead of me.
Early this morning I dropped by the Clinic to leave some paperwork and request a meeting with Dr. S.
They said they would text him with a request to call me.
I went to the ICU to see Boone. His color is better, only mildly yellow. His beard and 'stash are growing out pretty fast. The head hair is being slower, but it is coming back too. He was sleeping for the most part so I put my head down on the bed and tried to have a little cat nap.
My phone vibrated, but the call failed. It was a number I didn't have in my contacts. So I left the ICU, went to the main Atrium, and called. It was the clinic, Dr. S. got the message and will call. I explained that in the ICU, I can't get a cell signal anywhere on that floor. Nurse C said, to come on down to the clinic, Dr. S. was there seeing outpatients.
When I arrived they ushered me back to the infusion room. A large room with 4-5 chairs for patients to sit and get infused. I took a seat, and as soon as Dr. S. finished talking to the patient in the next room he came in to talk to me. He scooted his chair up close, knees to knees. I wanted to know where we are what's really going on, and why is there so much conflicting information.
He keeps total eye contact with you when you are talking. He said Boone is in a bad place right now. The spinal tap, or lumbar puncture, is to determine if there is a fungal or bacterial infection in his brain, or another type of Leukemia that sometimes can pop up in the brain. He clearly did not associate the seizure with the photopheresis. He said there appears to be something happening there and we need to find out what's going on. I told him Boone had been hit by a car at age 9 and had a scar on his head in the area they are seeing these "old clots". He just shook his head no. That's not it.
We discussed all the doctors and all the comments they've made that just seem strange and confusing. He in no way denied anything I said. What he told me was first of all, he is in charge. There is no other Dr. including Dr. H the ID doc that can over rule or change his orders. (Yeah!) He acknowledged that it looks like they are not communicating, and it's difficult because they can never all be in the same room at the same time. It's a 24 shift of doctors and rotations, so people can have days off. I totally get that. He said they are in close communication and he would make it clear to them who was in charge and to not make off hand remarks about something. Each, he said, have their own bedside manner and most dumb down what they say to the families. Agreed. They dumb it down so much it doesn't make sense. And that any formal communications to the family would be from Dr. S. to me directly. I think I love this man. When we finished our talk, I felt like it's clear Dr. S. was doing everything he could to help Boone. There is always the future unknown to deal with, but he was in no way confused or indecisive about the corse to be taken.
He said he would see me in the ICU when he made rounds. I explained to him I had to leave by 12:30 because I had friends coming to the condo to help me get the rest of our stuff out. He promised me he would be there in time to see me before I had to go.
Back up in the ICU, I was telling Boone what happened, and said Dr S. had promised to be by in time for me to be here. The nurse in the room laughed out loud.
Boone was awake and alert and making his normal smart ass remarks, in between short rest periods. Ann and I were making another nurse laugh from the stories we were telling. It was a good morning.
Our friend Mike came in to visit. He was there to help me with the moving. Then Dr. S. and his entourage entered the room. It was 12:15. He basically had the same talk with Boone, Ann, Mike, and me that we had earlier. He's in charge. Boone's in a tough spot. He's gonna fix it if he can. All communications are going to be from him to me or Boone directly.
He poked around on Boone, did the normal check up. As he was leaving he said he wanted the catheter removed, mostly because it's exercise for Boone to have to deal with peeing. The lumbar puncture was going to happen, and hopefully Boone will be back on the ward tomorrow, blogging instead of me.
Monday, June 24, 2013
Pauline here.
I just don't know what to say.
Boone was taken off the respirator today, put on regular hose O2, and wonderfully taken off the Propofol. When I was having to leave he was just coming around. His sisters were both there with him. Reports are good that he is alert, and presumably comfortable.
It's so hard to get any sort of communications through in the ICU. I believe that floor is nothing but different ICU units; you can't get a decent signal unless you go outside. If we are lucky, we might get a single bar for a few seconds.
Stella, I was totally wrong in my assessment of his violent head shaking. I guess that's what I would have been trying to say if it were me. Today when he was able to nod responses, I asked him if he was giving up.
His eyes opened wide, and a puzzled NO shake came forth. So what do I know? Apparently not my husband of 36 years. When I said everything would be ok, he nodded yes.
He then tried to say 3 words to me. I repeated what I thought he was mouthing. No. Tried several times but I just could not understand. He looked like it was important. His hands are (hopefully were by now) restrained...Oh my...thats what he was mouthing: Un Tie Me....oh no!!
The curtain fell and time passed.....
After so many texts and a phone call, I found out Dr. S arrived shortly after I had to leave. Ann was straightening up Boone's covers and Dr. S saw he was in restraints. He immediately ordered them off. There was no need for them because Boone is definitely aware of what's going on and who all is in the room and he is not going to attack his tubing.
He was taken off the regular O2, and did fine.
The Infectious Disease Dr came in and went over Boone from head to toe and said she saw no indication of any infection. She wants the MRI of his brain to be repeated, because she said he was clearly moving during the scan and he was so sedated they weren't going to see anything anyway.
So.... why didn't the Neurologist notice this??
Ann said apparently the Neurologist had been unaware that the seizure happened during the photopheresis procedure. Seizures are a known side effect of the procedure. Maybe there's just too many doctors that aren't talking together but only getting snippets of information. Boone seems to always have his episodes on Friday and this time close to shift change. Not good timing.
The ID Dr also over ruled the talk about doing a spinal tap to see if they can isolate the fungus or bacteria that appears to be causing all these bad reactions. It made no sense to me either, or Ann. So glad she was there to query the Dr. about it.
In talking to Ann, her memory of when Boone was hit by a car at age 9 on the head, sounds like it is very close to where Dr. W said the old stroke was appearing. Could it just be the old bumper on the noggin?
The ID Dr. is supposed to round in the morning. Hopefully I can catch her and Dr S.
It's time to get everyone in one room and have a chat about what's really going on. To me, and again what do I know, it seems the liver is the big issue right now. He is incredibly yellow. His tears looked yellow to me. His urine is dark orange. His skin is between dijon and yellow mustard. We know he's had high bilirubin levels for a while.
Hopefully Boone will be back on the BMT ward tomorrow. He seems to be back to where he was Friday before all this upset. Wish I could call him...but his phone, lap top, and pad are all locked up in someone's office on the ward for safe keeping.
I just don't know what to say.
Boone was taken off the respirator today, put on regular hose O2, and wonderfully taken off the Propofol. When I was having to leave he was just coming around. His sisters were both there with him. Reports are good that he is alert, and presumably comfortable.
It's so hard to get any sort of communications through in the ICU. I believe that floor is nothing but different ICU units; you can't get a decent signal unless you go outside. If we are lucky, we might get a single bar for a few seconds.
Stella, I was totally wrong in my assessment of his violent head shaking. I guess that's what I would have been trying to say if it were me. Today when he was able to nod responses, I asked him if he was giving up.
His eyes opened wide, and a puzzled NO shake came forth. So what do I know? Apparently not my husband of 36 years. When I said everything would be ok, he nodded yes.
He then tried to say 3 words to me. I repeated what I thought he was mouthing. No. Tried several times but I just could not understand. He looked like it was important. His hands are (hopefully were by now) restrained...Oh my...thats what he was mouthing: Un Tie Me....oh no!!
The curtain fell and time passed.....
After so many texts and a phone call, I found out Dr. S arrived shortly after I had to leave. Ann was straightening up Boone's covers and Dr. S saw he was in restraints. He immediately ordered them off. There was no need for them because Boone is definitely aware of what's going on and who all is in the room and he is not going to attack his tubing.
He was taken off the regular O2, and did fine.
The Infectious Disease Dr came in and went over Boone from head to toe and said she saw no indication of any infection. She wants the MRI of his brain to be repeated, because she said he was clearly moving during the scan and he was so sedated they weren't going to see anything anyway.
So.... why didn't the Neurologist notice this??
Ann said apparently the Neurologist had been unaware that the seizure happened during the photopheresis procedure. Seizures are a known side effect of the procedure. Maybe there's just too many doctors that aren't talking together but only getting snippets of information. Boone seems to always have his episodes on Friday and this time close to shift change. Not good timing.
The ID Dr also over ruled the talk about doing a spinal tap to see if they can isolate the fungus or bacteria that appears to be causing all these bad reactions. It made no sense to me either, or Ann. So glad she was there to query the Dr. about it.
In talking to Ann, her memory of when Boone was hit by a car at age 9 on the head, sounds like it is very close to where Dr. W said the old stroke was appearing. Could it just be the old bumper on the noggin?
The ID Dr. is supposed to round in the morning. Hopefully I can catch her and Dr S.
It's time to get everyone in one room and have a chat about what's really going on. To me, and again what do I know, it seems the liver is the big issue right now. He is incredibly yellow. His tears looked yellow to me. His urine is dark orange. His skin is between dijon and yellow mustard. We know he's had high bilirubin levels for a while.
Hopefully Boone will be back on the BMT ward tomorrow. He seems to be back to where he was Friday before all this upset. Wish I could call him...but his phone, lap top, and pad are all locked up in someone's office on the ward for safe keeping.
Sunday, June 23, 2013
Me again.
I met with Dr. B this morning, again in the BMT ward, catching him as he was making rounds. He was clearly irritated and said he would see me in the ICU; but still he answered my questions. I told him I had gotten word that Boone's liver was ok. He looked at me like I had lost my mind. No the liver is not ok. I asked about prognosis. He said the same as it was yesterday. Then he lightened up a bit and said he had not yet talked to the Neurologist about the MRI results.
When I arrived at the ICU, Boone was the same as when I left; off in Propofol land. I held his hand, rubbed his arm, and had a good cry. I put my head down on his bed where my cheek could touch the back of his hand. The droning of the HEPA filter machine was lulling me to sleep. I didn't bother to look up when someone came in. No need to; all nurses, or techs, or housekeepers; a constant steady stream.
Then the Neurologist came in and in a loud commanding voice said "Mr. Gregory, how are you this morning?" Boone's eyes opened and he almost sat up. I guess I shrieked louder than I realized, be cause the doctor said "You weren't expecting that were you?" WT*!! Hell no! Scared the crap out of me. But Boone was back in Propofol land in seconds. The doctor started talking to him more, he gets yes nods, and nos from mild head wobbling as appropriate, so obviously Boone was hearing and understanding. The neurologist said he was going to order an MRI for Monday morning. I told him they took him away yesterday and did one, that Dr. B had ordered it. Dr W. then went out to look at the MRI.
Shortly he returned and said that it didn't really show much that wasn't apparent on the CT scan; he was ordering an EEG. He squeezed Boone's feet and hands and got Boone to squeeze back, then told him to squeeze my hand, and so he did. I squeezed back and Boone did too. Dr. W's assessment was that Boone was a tiny bit better today than yesterday. He said the Propofol had to be stopped by Dr. O since he was the one that started it.
About 30 minutes later a nurse from Neurology came in to do the EEG. I asked if I could watch her screen as she did it. That was fine with her, but she could not answer any questions if I had any. I asked, is that because you are not allowed or because you don't know? Not allowed. She knows a good bit about the scan image of course, but doesn't know the fine points. She proceeded to hook him up to a couple dozen sensors. She put a cap on him, marked his head all over with a red pen, then started glueing and taping each one in place. Just as she finished the the alarm went off on the monitor dripping the Propofol. The ICU nurse came in to change out the bottles. The Neurology nurse had her delay the exchange until after the EEG. She said they wouldn't get any sort of reasonable data if he were on the drug. I got up then and went around to her monitor. You could see his brain activity increasing over a period of about a minute, then she said ok looks likes he's clear and started the test.
She would holler across the room at him to open his eyes, the sensors went crazy. He'd shut his eyes everything would calm down. She went over and pinched his right big toe, the sensors again did their bouncing about. "Good, he feels pain" she said. Then she went to squeeze his left big toe, the one that is very sore from the nail falling off. I didn't say anything, I wanted to see what would happen. It looked like a 12 on the Richter scale. Then I told her about the nail. "Well good"... The test went on for about 15-20 minutes. By this time Boone was beginning to wake up a bit. He gagged some because of the ventilator but was calm. He was looking around the room and saw me standing there trying my best to smile. She unhooked him and departed.
I decided this might be my only chance to talk to him without him being so drugged. I stood beside him and asked if he could hear me. He nodded yes. I said "You are going the alright, don't worry". He started violently shaking his head no. I rubbed his head and reassured him he would be fine. Again he shook his head no as hard as he could and began to cry. I said "You know I love you, don't you?" he nodded yes and the tears continued to flow. He looked at me, and then they started gushing. Again I told him he would be ok. Again he was adament , that he was not going to get better. The ICU nurse came in and restarted the Propofol and his tears stopped.
Dr B came in, said he had spoken with Dr. W about the MRI and there were no signs of infection, still just these spots that looked like old strokes. He seemed upbeat and maybe things were better, then said he wanted to do a spinal tap to check for bacteria. I asked him at what point do we throw in the towel. He paused looked me in the eyes and said Dr S will be rounding tomorrow. We - not just me- would talk to him about further treatments and possible outcomes. He said Boone has less than 1% chance now. Obviously, they want to succeed and try everything, but I'm not so sure a spinal tap is worth the pain and agony to Boone. If they find a fungal or bacterial infection and the Dr. says he can treat it, ok fine, but to what end? If the liver is "shot" what does it matter? Not to mention the infection risk from the procedure is extremely high. He's on so many anti fungals, anti bacterials, anti virals, and he obviously feels like he's not going to make it, at some point, when do you just say no? Everything they've tried so far has had a negative reaction. He can't breathe without the ventilator machine, he can't eat except by IV, and he has zero quality of life.
It's like that old seventies movie They Shoot Horses Don't They? I wouldn't put my dog through such agony.
Several friends came by to say whatever they felt they needed to say. I try to step outside to give them privacy. Most were satisfied if they got any response. They just wanted him to know they were there and they care deeply for him.
I guess tomorrow morning with Dr. S is going to tell the tale. I'm not sure I'm ready for what I expect him to say.
I met with Dr. B this morning, again in the BMT ward, catching him as he was making rounds. He was clearly irritated and said he would see me in the ICU; but still he answered my questions. I told him I had gotten word that Boone's liver was ok. He looked at me like I had lost my mind. No the liver is not ok. I asked about prognosis. He said the same as it was yesterday. Then he lightened up a bit and said he had not yet talked to the Neurologist about the MRI results.
When I arrived at the ICU, Boone was the same as when I left; off in Propofol land. I held his hand, rubbed his arm, and had a good cry. I put my head down on his bed where my cheek could touch the back of his hand. The droning of the HEPA filter machine was lulling me to sleep. I didn't bother to look up when someone came in. No need to; all nurses, or techs, or housekeepers; a constant steady stream.
Then the Neurologist came in and in a loud commanding voice said "Mr. Gregory, how are you this morning?" Boone's eyes opened and he almost sat up. I guess I shrieked louder than I realized, be cause the doctor said "You weren't expecting that were you?" WT*!! Hell no! Scared the crap out of me. But Boone was back in Propofol land in seconds. The doctor started talking to him more, he gets yes nods, and nos from mild head wobbling as appropriate, so obviously Boone was hearing and understanding. The neurologist said he was going to order an MRI for Monday morning. I told him they took him away yesterday and did one, that Dr. B had ordered it. Dr W. then went out to look at the MRI.
Shortly he returned and said that it didn't really show much that wasn't apparent on the CT scan; he was ordering an EEG. He squeezed Boone's feet and hands and got Boone to squeeze back, then told him to squeeze my hand, and so he did. I squeezed back and Boone did too. Dr. W's assessment was that Boone was a tiny bit better today than yesterday. He said the Propofol had to be stopped by Dr. O since he was the one that started it.
About 30 minutes later a nurse from Neurology came in to do the EEG. I asked if I could watch her screen as she did it. That was fine with her, but she could not answer any questions if I had any. I asked, is that because you are not allowed or because you don't know? Not allowed. She knows a good bit about the scan image of course, but doesn't know the fine points. She proceeded to hook him up to a couple dozen sensors. She put a cap on him, marked his head all over with a red pen, then started glueing and taping each one in place. Just as she finished the the alarm went off on the monitor dripping the Propofol. The ICU nurse came in to change out the bottles. The Neurology nurse had her delay the exchange until after the EEG. She said they wouldn't get any sort of reasonable data if he were on the drug. I got up then and went around to her monitor. You could see his brain activity increasing over a period of about a minute, then she said ok looks likes he's clear and started the test.
She would holler across the room at him to open his eyes, the sensors went crazy. He'd shut his eyes everything would calm down. She went over and pinched his right big toe, the sensors again did their bouncing about. "Good, he feels pain" she said. Then she went to squeeze his left big toe, the one that is very sore from the nail falling off. I didn't say anything, I wanted to see what would happen. It looked like a 12 on the Richter scale. Then I told her about the nail. "Well good"... The test went on for about 15-20 minutes. By this time Boone was beginning to wake up a bit. He gagged some because of the ventilator but was calm. He was looking around the room and saw me standing there trying my best to smile. She unhooked him and departed.
I decided this might be my only chance to talk to him without him being so drugged. I stood beside him and asked if he could hear me. He nodded yes. I said "You are going the alright, don't worry". He started violently shaking his head no. I rubbed his head and reassured him he would be fine. Again he shook his head no as hard as he could and began to cry. I said "You know I love you, don't you?" he nodded yes and the tears continued to flow. He looked at me, and then they started gushing. Again I told him he would be ok. Again he was adament , that he was not going to get better. The ICU nurse came in and restarted the Propofol and his tears stopped.
Dr B came in, said he had spoken with Dr. W about the MRI and there were no signs of infection, still just these spots that looked like old strokes. He seemed upbeat and maybe things were better, then said he wanted to do a spinal tap to check for bacteria. I asked him at what point do we throw in the towel. He paused looked me in the eyes and said Dr S will be rounding tomorrow. We - not just me- would talk to him about further treatments and possible outcomes. He said Boone has less than 1% chance now. Obviously, they want to succeed and try everything, but I'm not so sure a spinal tap is worth the pain and agony to Boone. If they find a fungal or bacterial infection and the Dr. says he can treat it, ok fine, but to what end? If the liver is "shot" what does it matter? Not to mention the infection risk from the procedure is extremely high. He's on so many anti fungals, anti bacterials, anti virals, and he obviously feels like he's not going to make it, at some point, when do you just say no? Everything they've tried so far has had a negative reaction. He can't breathe without the ventilator machine, he can't eat except by IV, and he has zero quality of life.
It's like that old seventies movie They Shoot Horses Don't They? I wouldn't put my dog through such agony.
Several friends came by to say whatever they felt they needed to say. I try to step outside to give them privacy. Most were satisfied if they got any response. They just wanted him to know they were there and they care deeply for him.
I guess tomorrow morning with Dr. S is going to tell the tale. I'm not sure I'm ready for what I expect him to say.
Saturday, June 22, 2013
Dear Friends, Pauline here.
If you read the previous set of comments you may have noticed the ICU lurking in there. Shortly after Boone posted yesterday, he had a seizure. I wasn't there, but my understanding is that it happened during the Photopheresis. (Photopheresis is simply running any liquid through a UV light filter, just like is done in aquariums and ponds. The UV light kills bacteria.)
Dr O in the ICU put Boone on Propofol (the Michael Jackson drug) to stop the seizure. The hospital tried to reach me, but at that time I had plugged in the phone to charge, and gone outside so they called Boone's brother Harold. Harold's text to call immediately sent me flying to the hospital at about 7:30 PM. His night nurse on the BMT ward Nurse E, that he dearly loves came to the ICU to see him. They enjoyed talking movies, and music, and books. Boone cherished the visits from her when there was nothing going on she had to tend to.
When I arrived Harold and Randy were there. Boone was hooked up to a ventilator; a lot more scary looking than other ventilators. It was strapped onto his head, it kinda reminded me of the mask that Anthony Hopkins wore in Silence of the Lambs. It held the ventilator tubes into his nose and the hydrating tubes into his mouth. It was hooked up to it's own special computer/ monitor. Boone was very yellow and bloated. The yellow was deeper than it has been, the bloating was about the same, he just looks very overweight around his face and neck.
The ICU doc; Dr O came around to check on him and told us that Boone had been non responsive before the Propofol. The ventilator was there because his brain was not telling his lungs to breathe. Then he just said all (we) could do was just pray and pray hard. We all cried together and Harold and I spoke words that we know we are going to loose him, and they took him away for a CT scan.
Later Dr W, the Neurologist looking at the scan called to the nurses desk and they put me on the phone. He said Boone had apparently had a baby stroke sometime in the past, and there was some clumping there and a couple of other spots, but nothing that looked terribly alarming. He said that when a person's body is under this much stress, that the brain begins to shut down; a normal process of dying.
After that, I had to go home because of the stress, and critters, and frankly I have to sleep occasionally. A 1 hour drive in the Roadster with the top down did me a world of good. I needed air, lots of air, and there was plenty of it on an empty interstate in the late night hours. I got home, took my sleepy pills and laid down on the bare mattress (Our furniture was moved today from the condo to the farm) in my clothes, with the phone in it's charger right beside me, and stared at the ceiling most of the night.
Early this morning I caught Dr. B of the Transplant Team while he was making rounds in the BMT unit. He said they were very concerned about Boone. The Photopheresis can cause blood clots. He was ordering an MRI to look for a possible fungal infection in Boone's brain. He said if there is one, that's the end. Boone will be gone in a few days. If it turns out that it is a reaction to the immunosuppressant, then they could adjust the dosage to see if that might help. Then it might be a week or so. I asked him about the Bilirubin levels and Boone being so yellow. My question was "so basically his liver is shot?" he said yes. He then said he didn't think Boone would ever leave the hospital. He's had so many complications and bad reactions to everything they try. This man that I previously called an Ass, hugged me and said he was very sorry. I believe he truly is. All the Oncologists couch everything they say to put it in the best light possible; but this was direct and to the point.
When I walked into Boone's ICU room I was taken aback by the blood coming out of his mouth and nose. The nurse was prepared. Before I said anything, she said it just looks bad because it"s irritating his sinuses, but it's Ok, don't worry.
I pulled the visitor chair up to the bed and took Boone's hand. It was very cool, his arm was cool, his head under the cap knitted for cancer patients by little old ladies, was toasty warm. I got right up to his ear and fairly loudly said "Boone, It's me, can you hear me?" There was the slightest of nods; yes he could. Then I asked if he could feel me touching him. Another tiny nod yes. So I told him the things I needed to say and rubbed his head. He likes a good head rubbing. There was no other response. I rubbed on his arms and held onto his hand; there was no squeeze back.
After his normal rounds on the BMT ward, Dr. B came up to see Boone. He checked his feet, hands, arms, looked at the ostomy bag, the pee bag, checked all the ports, and looked over all the tubes and bags, then went to listen to his heart. I swear, when he went to listen to Boone's backside, Boone raised his shoulder a tiny bit. Has it become an automatic response? Even his breathing rate changed to the typical deep breaths. Nurse M, from the BMT ward came up to see him. She was clearly worried. I can't imagine doing the job these BMT nurses do, especially since the patients are there for so long, and they meet all the family and friends, and get to know the patient's life history, then they're gone. She was a bit stunned because he had been doing better and was trying so hard to do everything the doctors asked him to do.
Harold and Randy were both there by mid morning. We discussed possible final arrangements.
Our friend Rosie, who used to work the Oncology ward at Vanderbilt, came by. She went in and talked to Boone, giving him a pep talk then bless her heart, she got me out of there and to a local dive for a great fish sandwich. (Yesterday all I had to eat was Snickers Minis. That's my primary diet recently; I've lost about 20 pounds.) She thinks the situation is grim.
After lunch I went back up to the ICU and sat beside Boone. I held his hand, rubbed his arm, and had a good long cry. It wasn't too long before the nurses and techs were making him portable to go get his MRI.
Harold and Randy were at the hospital, so I drove home to try to get some sleep.
Harold texted later that the liver and kidneys looked OK and that their sister Linda had arrived.
So, I guess we don't really know all the facts yet, and please forgive me Harold if I twisted things, especially the sequence of events. I just cannot think straight. I can't complete a sentence; when talking, without forgetting the point.
It's all so very sad. I think if anyone out there wants to speak to Boone again, they should get on it. Maybe one of you can snap him out of this.
Im going to bed. Hope my Sleepy Time Time pills work tonight. I want try to catch Dr. B again for a private talk. He is a brilliant man. I'm sorry I called him an Ass.
If you read the previous set of comments you may have noticed the ICU lurking in there. Shortly after Boone posted yesterday, he had a seizure. I wasn't there, but my understanding is that it happened during the Photopheresis. (Photopheresis is simply running any liquid through a UV light filter, just like is done in aquariums and ponds. The UV light kills bacteria.)
Dr O in the ICU put Boone on Propofol (the Michael Jackson drug) to stop the seizure. The hospital tried to reach me, but at that time I had plugged in the phone to charge, and gone outside so they called Boone's brother Harold. Harold's text to call immediately sent me flying to the hospital at about 7:30 PM. His night nurse on the BMT ward Nurse E, that he dearly loves came to the ICU to see him. They enjoyed talking movies, and music, and books. Boone cherished the visits from her when there was nothing going on she had to tend to.
When I arrived Harold and Randy were there. Boone was hooked up to a ventilator; a lot more scary looking than other ventilators. It was strapped onto his head, it kinda reminded me of the mask that Anthony Hopkins wore in Silence of the Lambs. It held the ventilator tubes into his nose and the hydrating tubes into his mouth. It was hooked up to it's own special computer/ monitor. Boone was very yellow and bloated. The yellow was deeper than it has been, the bloating was about the same, he just looks very overweight around his face and neck.
The ICU doc; Dr O came around to check on him and told us that Boone had been non responsive before the Propofol. The ventilator was there because his brain was not telling his lungs to breathe. Then he just said all (we) could do was just pray and pray hard. We all cried together and Harold and I spoke words that we know we are going to loose him, and they took him away for a CT scan.
Later Dr W, the Neurologist looking at the scan called to the nurses desk and they put me on the phone. He said Boone had apparently had a baby stroke sometime in the past, and there was some clumping there and a couple of other spots, but nothing that looked terribly alarming. He said that when a person's body is under this much stress, that the brain begins to shut down; a normal process of dying.
After that, I had to go home because of the stress, and critters, and frankly I have to sleep occasionally. A 1 hour drive in the Roadster with the top down did me a world of good. I needed air, lots of air, and there was plenty of it on an empty interstate in the late night hours. I got home, took my sleepy pills and laid down on the bare mattress (Our furniture was moved today from the condo to the farm) in my clothes, with the phone in it's charger right beside me, and stared at the ceiling most of the night.
Early this morning I caught Dr. B of the Transplant Team while he was making rounds in the BMT unit. He said they were very concerned about Boone. The Photopheresis can cause blood clots. He was ordering an MRI to look for a possible fungal infection in Boone's brain. He said if there is one, that's the end. Boone will be gone in a few days. If it turns out that it is a reaction to the immunosuppressant, then they could adjust the dosage to see if that might help. Then it might be a week or so. I asked him about the Bilirubin levels and Boone being so yellow. My question was "so basically his liver is shot?" he said yes. He then said he didn't think Boone would ever leave the hospital. He's had so many complications and bad reactions to everything they try. This man that I previously called an Ass, hugged me and said he was very sorry. I believe he truly is. All the Oncologists couch everything they say to put it in the best light possible; but this was direct and to the point.
When I walked into Boone's ICU room I was taken aback by the blood coming out of his mouth and nose. The nurse was prepared. Before I said anything, she said it just looks bad because it"s irritating his sinuses, but it's Ok, don't worry.
I pulled the visitor chair up to the bed and took Boone's hand. It was very cool, his arm was cool, his head under the cap knitted for cancer patients by little old ladies, was toasty warm. I got right up to his ear and fairly loudly said "Boone, It's me, can you hear me?" There was the slightest of nods; yes he could. Then I asked if he could feel me touching him. Another tiny nod yes. So I told him the things I needed to say and rubbed his head. He likes a good head rubbing. There was no other response. I rubbed on his arms and held onto his hand; there was no squeeze back.
After his normal rounds on the BMT ward, Dr. B came up to see Boone. He checked his feet, hands, arms, looked at the ostomy bag, the pee bag, checked all the ports, and looked over all the tubes and bags, then went to listen to his heart. I swear, when he went to listen to Boone's backside, Boone raised his shoulder a tiny bit. Has it become an automatic response? Even his breathing rate changed to the typical deep breaths. Nurse M, from the BMT ward came up to see him. She was clearly worried. I can't imagine doing the job these BMT nurses do, especially since the patients are there for so long, and they meet all the family and friends, and get to know the patient's life history, then they're gone. She was a bit stunned because he had been doing better and was trying so hard to do everything the doctors asked him to do.
Harold and Randy were both there by mid morning. We discussed possible final arrangements.
Our friend Rosie, who used to work the Oncology ward at Vanderbilt, came by. She went in and talked to Boone, giving him a pep talk then bless her heart, she got me out of there and to a local dive for a great fish sandwich. (Yesterday all I had to eat was Snickers Minis. That's my primary diet recently; I've lost about 20 pounds.) She thinks the situation is grim.
After lunch I went back up to the ICU and sat beside Boone. I held his hand, rubbed his arm, and had a good long cry. It wasn't too long before the nurses and techs were making him portable to go get his MRI.
Harold and Randy were at the hospital, so I drove home to try to get some sleep.
Harold texted later that the liver and kidneys looked OK and that their sister Linda had arrived.
So, I guess we don't really know all the facts yet, and please forgive me Harold if I twisted things, especially the sequence of events. I just cannot think straight. I can't complete a sentence; when talking, without forgetting the point.
It's all so very sad. I think if anyone out there wants to speak to Boone again, they should get on it. Maybe one of you can snap him out of this.
Im going to bed. Hope my Sleepy Time Time pills work tonight. I want try to catch Dr. B again for a private talk. He is a brilliant man. I'm sorry I called him an Ass.
Friday, June 7, 2013
Day 98, I guess. Pauline here.
As a caregiver occasionally you need some space, or time, or maybe just spacetime. This past few days Ann, Boone's donor was here to stay with him at the hospital to visit him allowing me to get some R&R by packing up as much as I can from the condo and moving it to the farm. I've talked to our attorney about rental agreements, with which gratefully he is going to help me.
I've fought with Verizon over my new phone and wifi service to the point I had to get my only blood relative, my nephew, to intervene for me because I was unable to keep it together. Verizon is billing me over $600 for one month. Service is terrible. They say I'm using data like crazy. No streaming, no interactive gaming. I am guilty of playing Sudoku from time to time. Over 8 gigs worth, they say. They are coming out to take a reading on the signal. Such a hassle, and this after a three month long fight with AT&T for double billing us.
I've pressure washed 14 large rugs, and been trying to blow dry them with the leaf blower, but after 3 days they are still too wet to move to the dryer (& too heavy). I've only gotten half the grass cut, and its raining. The mower is acting up and I'm having to change belts and fix broken steering pins. I've used stretch wrap to hold the bagger schute in place so it doesn't fall off, and duct taped the bag holder together so it will hold up the bags. Now if I can just figure out how to stand it up on its rear...
I'm emptying out the farm house of the "staging furniture" I bought 2 years ago, so there will be room for the condo furniture when it arrives, and to give the house a thourough cleaning. My plan was to set Boone up a man cave but he insisted he didn't want one, so I'm getting a Pauline Cave in his former wood working shop. It's big enough for the pool table a full living room set and tv and a small kitchen/ office area along side the chain saws. I won't black out the windows for me.
There's been condo TV service to cut off and the farm service to change. Otherwise, I've been cleaning out and painting the Pauline Cave, unpacking stacks of boxes, sanitizing the old refrigerator and stocking it with soft drinks.
The disability insurance should have kicked in March 1st, but they are stalling. That's really sorry. I'm sure they make sure the premiums are paid on time. Just another hassle.
On the trip back from visiting with the nice lady at Verizon, Boone called. The phone was acting up as usual, and all I heard was something is wrong with his bladder. I lost it. This was just too much I had hit my limit. I seriously considered for over a couple of hours to call Boone's brother, who works as a crisis counselor for his professional help.
Instead, I took a couple of Boone's anti anxiety pills and started screaming.
I had not been able to do a primal screen in decades, but yesterday, there was about 15 minutes of screaming as loud as I possibly could scream. The dogs were pretty sure they were not in trouble, but were crouching in the corner not knowing what crazy thing I might do next. Leukka, my only baby child, got up on the pool table, stretched her legs and paws around my neck and laid her head down on my collar bone and licked me once. She knew Mommy was in a strange place.
Fortunately long ago, while I was bottle feeding Leukka, I started piddling with a moss garden. It gave me something to do while I had to be paying so much attention to her needs, such as stopping Lyla from eating her. Over the last year, and especially while Boone's been in the hospital, I've been working on the moss garden which has evolved into a volcano which has kept me sane.
It was so good to see Boone after missing him terribly for several days. I crawled into the hospital bed with him and just laid there for several minutes. Physical contact is so rare these days, but now his white counts are good enough I feel safe enough for a tiny on the lips kiss without a mask between us.
As a caregiver occasionally you need some space, or time, or maybe just spacetime. This past few days Ann, Boone's donor was here to stay with him at the hospital to visit him allowing me to get some R&R by packing up as much as I can from the condo and moving it to the farm. I've talked to our attorney about rental agreements, with which gratefully he is going to help me.
I've fought with Verizon over my new phone and wifi service to the point I had to get my only blood relative, my nephew, to intervene for me because I was unable to keep it together. Verizon is billing me over $600 for one month. Service is terrible. They say I'm using data like crazy. No streaming, no interactive gaming. I am guilty of playing Sudoku from time to time. Over 8 gigs worth, they say. They are coming out to take a reading on the signal. Such a hassle, and this after a three month long fight with AT&T for double billing us.
I've pressure washed 14 large rugs, and been trying to blow dry them with the leaf blower, but after 3 days they are still too wet to move to the dryer (& too heavy). I've only gotten half the grass cut, and its raining. The mower is acting up and I'm having to change belts and fix broken steering pins. I've used stretch wrap to hold the bagger schute in place so it doesn't fall off, and duct taped the bag holder together so it will hold up the bags. Now if I can just figure out how to stand it up on its rear...
I'm emptying out the farm house of the "staging furniture" I bought 2 years ago, so there will be room for the condo furniture when it arrives, and to give the house a thourough cleaning. My plan was to set Boone up a man cave but he insisted he didn't want one, so I'm getting a Pauline Cave in his former wood working shop. It's big enough for the pool table a full living room set and tv and a small kitchen/ office area along side the chain saws. I won't black out the windows for me.
There's been condo TV service to cut off and the farm service to change. Otherwise, I've been cleaning out and painting the Pauline Cave, unpacking stacks of boxes, sanitizing the old refrigerator and stocking it with soft drinks.
The disability insurance should have kicked in March 1st, but they are stalling. That's really sorry. I'm sure they make sure the premiums are paid on time. Just another hassle.
On the trip back from visiting with the nice lady at Verizon, Boone called. The phone was acting up as usual, and all I heard was something is wrong with his bladder. I lost it. This was just too much I had hit my limit. I seriously considered for over a couple of hours to call Boone's brother, who works as a crisis counselor for his professional help.
Instead, I took a couple of Boone's anti anxiety pills and started screaming.
I had not been able to do a primal screen in decades, but yesterday, there was about 15 minutes of screaming as loud as I possibly could scream. The dogs were pretty sure they were not in trouble, but were crouching in the corner not knowing what crazy thing I might do next. Leukka, my only baby child, got up on the pool table, stretched her legs and paws around my neck and laid her head down on my collar bone and licked me once. She knew Mommy was in a strange place.
Fortunately long ago, while I was bottle feeding Leukka, I started piddling with a moss garden. It gave me something to do while I had to be paying so much attention to her needs, such as stopping Lyla from eating her. Over the last year, and especially while Boone's been in the hospital, I've been working on the moss garden which has evolved into a volcano which has kept me sane.
It was so good to see Boone after missing him terribly for several days. I crawled into the hospital bed with him and just laid there for several minutes. Physical contact is so rare these days, but now his white counts are good enough I feel safe enough for a tiny on the lips kiss without a mask between us.
Thursday, May 30, 2013
Day 90.
Dr. B. was on rounds again today. He came in smiling and it seemed like everything was ok. Boone's white count is over 5 (in the low normal range) his neutrophil count is over 3, which is fantastic. Still low on platelets and a bit anemic, but it's those infection fighters we are thrilled to see going upward.
Dr. B. didn't spend much time in the room, gave me a long glance that made me feel like things were moving in the right direction.
When he went out the LPN came over to listen to Boone's chest. He asked her something I couldn't make out, and her response was "You are not responding as well as we would like..." sent Boone into a tail spin. Say what? I thought that was the last protocol, the end of the line. Sent me spinning too. I could have choked her. Then I found out that Boone is reading my posts...Ummm shouldn't have posted about my talk with Dr. B. in the hall. Just shouldn't have done it. Boone said he knew anyway.
This evening the pathology report on the bacteria in his lungs came back. Boone was confused and told me it was E Boli, to which my response would be to run like hell, if I hadn't already heard from his nurse that it is E Coli. Not good, but at least it's not E Boli. I guess things could be worse. We'd have the CDC on us like ducks on a June bug.
But I guess there are always other drugs, and at least E Coli is common enough everyone knows what to do about it.
Nurse L got Boone up and walked him today with the PT lady. I could have helped, but I opted for a nap instead. Its extremely tiring and stressful to be trying to move, take care of two houses and critters, and be at the hospital as much as possible; not to mention facing the unknown everyday.
The popsicle was orange today. He was hoping for two, but no, only one per day.
Dr. B. was on rounds again today. He came in smiling and it seemed like everything was ok. Boone's white count is over 5 (in the low normal range) his neutrophil count is over 3, which is fantastic. Still low on platelets and a bit anemic, but it's those infection fighters we are thrilled to see going upward.
Dr. B. didn't spend much time in the room, gave me a long glance that made me feel like things were moving in the right direction.
When he went out the LPN came over to listen to Boone's chest. He asked her something I couldn't make out, and her response was "You are not responding as well as we would like..." sent Boone into a tail spin. Say what? I thought that was the last protocol, the end of the line. Sent me spinning too. I could have choked her. Then I found out that Boone is reading my posts...Ummm shouldn't have posted about my talk with Dr. B. in the hall. Just shouldn't have done it. Boone said he knew anyway.
This evening the pathology report on the bacteria in his lungs came back. Boone was confused and told me it was E Boli, to which my response would be to run like hell, if I hadn't already heard from his nurse that it is E Coli. Not good, but at least it's not E Boli. I guess things could be worse. We'd have the CDC on us like ducks on a June bug.
But I guess there are always other drugs, and at least E Coli is common enough everyone knows what to do about it.
Nurse L got Boone up and walked him today with the PT lady. I could have helped, but I opted for a nap instead. Its extremely tiring and stressful to be trying to move, take care of two houses and critters, and be at the hospital as much as possible; not to mention facing the unknown everyday.
The popsicle was orange today. He was hoping for two, but no, only one per day.
Wednesday, May 29, 2013
Day 88:
Bad days just start out bad and get worse. At about 6:30 AM, Boone's ostomy bag burst. It having the same consistency of water, went everywhere. Linens had to be ripped off the bed and the plastic bed liner washed. Boone had to be put in the shower. I scrubbed him from head to toe, dried him off and got clean clothes on him. Others were cleaning the floor, the rails, everything in range.
Today it was Dr. B. making rounds. The one I called an ass sometime back. I've grown to appreciate him. He is obviously brilliant and I guess they told him I called him an ass because he is very nice and attentive to me now.
Anyway Dr. B. came in and informed Boone that it is definately Graft vs Host Disease (GVHD) in his gut and in his lungs. They are still culturing the gram negative bacteria they found in his lungs.
I had just been reading about GVHD and asked Dr. B. what grade it was. His head whipped around, with that -you know about the grades??? He hesitated a second and said grade 3, then I guess he figured if I knew about the grades, I might know better. Then he said grade IV. From what I had read, that was my opinion. Grade IV GVHD is bad, really bad, and to have it in two areas is almost always fatal.
Dr. B. told us exactly what I had read, that there are 3 protocols for GVHD. The first is steroids, the second some unpronounceable drugs, and the third, another form of chemo. Boone had already had the first two protocols. If the third one doesn't work, then it's likely he would not survive.
Boone had lost six pounds from the fluid his guts were pumping out. Even with IVs going 24 hours a day of saline and food and liquid drugs, output was much greater than input. Classic GVHD.
Boone was begging for anything to eat or drink. He's still NPO. Anything swallowed will just inflame his gut and worsen the situation. He's allowed to chew ice, but has to spit out the water. He was very grateful to be trusted to spit.
After Dr. B. left the room, I chased him down the hall.
"OK, y'all always want to know a happy face number, so tell me, where on your happy face scale is Boone?" Dr. B. got a very puzzled look on his face, and said "A frown."
"No, I mean is he a 6 or a 7?" Dr. B. looked me straight in the eyes, hesitated, and said "No, he's an 8 or a 9." Dr. B. squeezed my upper arm and gave me the I'm very sorry look. I was stunned. I guess I knew it had to be bad, but the docs always soft peddle everything. He said we will know in a week or two how it will turn out.
I started notifying relatives and friends that Boone had taken a turn for the worse. That night they put him on protocol number three. A giant bag of stuff wrapped in a chemo protective bag.
Day 89.
Dr. B. was again on patrol. When he walked in the room he was smiling. It appears protocol three has helped. Boone's O2 levels have risen, even with the gas flow being turned down from a 6 to a 3. He's now holding his O2 in the high 90s. His white count jumped to 3.1 his neutrophil count is over 1000.
His reward?
One grape Popsicle per day. So sayeth Dr. B., so let it be done.
Thank you Dr. B.
Boone is very grateful..
Bad days just start out bad and get worse. At about 6:30 AM, Boone's ostomy bag burst. It having the same consistency of water, went everywhere. Linens had to be ripped off the bed and the plastic bed liner washed. Boone had to be put in the shower. I scrubbed him from head to toe, dried him off and got clean clothes on him. Others were cleaning the floor, the rails, everything in range.
Today it was Dr. B. making rounds. The one I called an ass sometime back. I've grown to appreciate him. He is obviously brilliant and I guess they told him I called him an ass because he is very nice and attentive to me now.
Anyway Dr. B. came in and informed Boone that it is definately Graft vs Host Disease (GVHD) in his gut and in his lungs. They are still culturing the gram negative bacteria they found in his lungs.
I had just been reading about GVHD and asked Dr. B. what grade it was. His head whipped around, with that -you know about the grades??? He hesitated a second and said grade 3, then I guess he figured if I knew about the grades, I might know better. Then he said grade IV. From what I had read, that was my opinion. Grade IV GVHD is bad, really bad, and to have it in two areas is almost always fatal.
Dr. B. told us exactly what I had read, that there are 3 protocols for GVHD. The first is steroids, the second some unpronounceable drugs, and the third, another form of chemo. Boone had already had the first two protocols. If the third one doesn't work, then it's likely he would not survive.
Boone had lost six pounds from the fluid his guts were pumping out. Even with IVs going 24 hours a day of saline and food and liquid drugs, output was much greater than input. Classic GVHD.
Boone was begging for anything to eat or drink. He's still NPO. Anything swallowed will just inflame his gut and worsen the situation. He's allowed to chew ice, but has to spit out the water. He was very grateful to be trusted to spit.
After Dr. B. left the room, I chased him down the hall.
"OK, y'all always want to know a happy face number, so tell me, where on your happy face scale is Boone?" Dr. B. got a very puzzled look on his face, and said "A frown."
"No, I mean is he a 6 or a 7?" Dr. B. looked me straight in the eyes, hesitated, and said "No, he's an 8 or a 9." Dr. B. squeezed my upper arm and gave me the I'm very sorry look. I was stunned. I guess I knew it had to be bad, but the docs always soft peddle everything. He said we will know in a week or two how it will turn out.
I started notifying relatives and friends that Boone had taken a turn for the worse. That night they put him on protocol number three. A giant bag of stuff wrapped in a chemo protective bag.
Day 89.
Dr. B. was again on patrol. When he walked in the room he was smiling. It appears protocol three has helped. Boone's O2 levels have risen, even with the gas flow being turned down from a 6 to a 3. He's now holding his O2 in the high 90s. His white count jumped to 3.1 his neutrophil count is over 1000.
His reward?
One grape Popsicle per day. So sayeth Dr. B., so let it be done.
Thank you Dr. B.
Boone is very grateful..
Monday, May 27, 2013
Day 87.
Pauline here. It seems if I'm the one posting, things are not peachy keen at all.
Memorial Day weekend has not been a good one for Boone. It started out with maybe getting on clear liquids, but that was stopped. On day 86 when Dr. S. was in the room on regular rounds, Boone's O2 level dropped into the low 80's. Doc had him breathe heavily for several breaths but there was no rise in his oxygen level. I guess since it was a holiday weekend and the ward is no where near full there was no entourage with the doc, just the two nurses.
Before Doc S. ordered it, one of the nurses was hooking Boone up to the oxygen feed in the head wall. Doc ordered it set on 6 and to be hydrated. After a bit, the best Boone could do was hold his O2 in the low 90's. The other nurse began showing Doc Boone's morning heart rate and BP history.
"You see his BP has been dropping all morning, and his heart rate has been fluctuating a bit". Doc studied the history report on the vitals contraption. You could clearly see that the muscles in his face were tensing up. Doc asked Boone to sit up.
I was sitting behind Boone as he sat up I could see he was shaking. Had he suddenly gotten cold? He hadn't been cold in days. Boone looked up at Doc and said "You look worried".
Doc said "I am worried. I'm not sure what's causing this." I think it was then he really noticed Boone was shaking. Doc put one hand on Boone's shoulder, and rubbed Boone's bald head with the other for several seconds, all the while making eye contact with me. He said " I'm going to take of you Buddy, don't worry, I've got your back". He looked worried to me.
Boone was sent to have a chest scan. We never heard any results from it. When Doc came in this morning he wasn't lingering at all, more tests. I can't recall him ever leaving without asking if we had any questions before.
Boone was supposed to have returned from Radiology to the room within the hour. It's a holiday, no backlog, in and out. I waited for almost 3 hours then had to go. The dogs can only cross their legs for so long. When I called Boone later, there was no answer. Second call, he answered. He was crying. He hasn't eaten in over a week; he's so hungry, so tired, and afraid. Even so, with the IV food he has gained up to 132 pounds.
Boone's blood counts are fluctuating up and down. He had a transfusion several days ago. I didn't see the bump in the numbers that I had expected.
Boone is very depressed. Can't say that I'm any better. Got home from the hospital with a long to do list, and instead decided to take a nap that lasted until about 7:30 when a good friend called to check in. I thought it was 4:30. Got up to get some chores done, realized how late it was, thought I'd post instead and go back to bed.
Pauline here. It seems if I'm the one posting, things are not peachy keen at all.
Memorial Day weekend has not been a good one for Boone. It started out with maybe getting on clear liquids, but that was stopped. On day 86 when Dr. S. was in the room on regular rounds, Boone's O2 level dropped into the low 80's. Doc had him breathe heavily for several breaths but there was no rise in his oxygen level. I guess since it was a holiday weekend and the ward is no where near full there was no entourage with the doc, just the two nurses.
Before Doc S. ordered it, one of the nurses was hooking Boone up to the oxygen feed in the head wall. Doc ordered it set on 6 and to be hydrated. After a bit, the best Boone could do was hold his O2 in the low 90's. The other nurse began showing Doc Boone's morning heart rate and BP history.
"You see his BP has been dropping all morning, and his heart rate has been fluctuating a bit". Doc studied the history report on the vitals contraption. You could clearly see that the muscles in his face were tensing up. Doc asked Boone to sit up.
I was sitting behind Boone as he sat up I could see he was shaking. Had he suddenly gotten cold? He hadn't been cold in days. Boone looked up at Doc and said "You look worried".
Doc said "I am worried. I'm not sure what's causing this." I think it was then he really noticed Boone was shaking. Doc put one hand on Boone's shoulder, and rubbed Boone's bald head with the other for several seconds, all the while making eye contact with me. He said " I'm going to take of you Buddy, don't worry, I've got your back". He looked worried to me.
Boone was sent to have a chest scan. We never heard any results from it. When Doc came in this morning he wasn't lingering at all, more tests. I can't recall him ever leaving without asking if we had any questions before.
Boone was supposed to have returned from Radiology to the room within the hour. It's a holiday, no backlog, in and out. I waited for almost 3 hours then had to go. The dogs can only cross their legs for so long. When I called Boone later, there was no answer. Second call, he answered. He was crying. He hasn't eaten in over a week; he's so hungry, so tired, and afraid. Even so, with the IV food he has gained up to 132 pounds.
Boone's blood counts are fluctuating up and down. He had a transfusion several days ago. I didn't see the bump in the numbers that I had expected.
Boone is very depressed. Can't say that I'm any better. Got home from the hospital with a long to do list, and instead decided to take a nap that lasted until about 7:30 when a good friend called to check in. I thought it was 4:30. Got up to get some chores done, realized how late it was, thought I'd post instead and go back to bed.
Friday, May 24, 2013
Day 84.
Pauline here again.
Boone is looking better. He weighed in at 127 pounds this morning. The IV bag food must be really good stuff. They put him back on NPO. No food hoping his stomach and intestines will settle down.
Unfortunately, the verdict appears to e Graft vs Host Disease (GVHD). I had thought that an infection would be worse than the GVHD, but by the looks on the doctor's face, I'm thinking the GVHD is more worrisome. My doctor said if it had been a viral infection, that those are very hard to fight. So yin and yang I guess.
It appears right now that Boone may be in the hospital for a while. He's been in a week now, and the only thing we've heard is maybe a week or two more, maybe three. ( Maybe more ?). I hate that Boone is missing his last opportunity to be in the condo. It has to be ready to show; as in empty and cleaned by June 25.
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Doc just came in. Definitely GVHD. They put him on steroids yesterday just in case. Doc said he's glad he went ahead it did it before the lab results were back. Now Boone is still NPO, they must tweak the steroids to get the right dosage, then hopefully to wean him off asap. Now he's acting like if Boone can get off the IV bag, he might can go home in a week or so. I do hope so.
Doc also said he needs visitors, especially at night to help with pulling him back to reality from the lucid dreams. I suppose this is the classic "sundowning". Come visit if you can.
All in all, he is much better. He's reading and watching Roadrunner cartoons.
Beep beep!
Pauline here again.
Boone is looking better. He weighed in at 127 pounds this morning. The IV bag food must be really good stuff. They put him back on NPO. No food hoping his stomach and intestines will settle down.
Unfortunately, the verdict appears to e Graft vs Host Disease (GVHD). I had thought that an infection would be worse than the GVHD, but by the looks on the doctor's face, I'm thinking the GVHD is more worrisome. My doctor said if it had been a viral infection, that those are very hard to fight. So yin and yang I guess.
It appears right now that Boone may be in the hospital for a while. He's been in a week now, and the only thing we've heard is maybe a week or two more, maybe three. ( Maybe more ?). I hate that Boone is missing his last opportunity to be in the condo. It has to be ready to show; as in empty and cleaned by June 25.
-------
Doc just came in. Definitely GVHD. They put him on steroids yesterday just in case. Doc said he's glad he went ahead it did it before the lab results were back. Now Boone is still NPO, they must tweak the steroids to get the right dosage, then hopefully to wean him off asap. Now he's acting like if Boone can get off the IV bag, he might can go home in a week or so. I do hope so.
Doc also said he needs visitors, especially at night to help with pulling him back to reality from the lucid dreams. I suppose this is the classic "sundowning". Come visit if you can.
All in all, he is much better. He's reading and watching Roadrunner cartoons.
Beep beep!
Thursday, May 23, 2013
Day 82 and counting...
Pauline here. Still in the hospital. No results yet from yesterday's CT scan and colonoscopy. Trying to find that bug has proved to be pretty tough.
Not sure where Boone is. He's having those reactions to the drugs again. He's been lying here all morning talking to a bunch of people on the telephone. Not sure where the phone is, or who he's hearing, but he's definitely busy. He's set up a couple of meetings, canceled one, talked to someone about how they doing are after their father's death. Alright I hope. The discussions don't seem to be particularly about work anymore.
I'm afraid he's going down that delusionary path that sent him to the ICU the first time. He started talking about having scissors again.
He called me at 4am wanting to know where I was. He was having issues figuring out what was real and what was not. The phone call ended in mumbling and then he just goes away. No goodbyes, just silence. He seems very worried in these middle if the night calls...there have been 3 so far. I'm fearful that the delusions will go from merely confusing to monstrous and scary. So far, no freakish looking eyes.
They are bringing him some solid food today. He thinks he hasn't been taken of NPO status, but tried to eat a bit anyway. Finally something tasted really good...the packaged OJ. Then he tried a spoonful of Rice Krispies. Then vomited only a little. He thought that went pretty well and wants more OJ.
We are waiting on the doctors rounds. I need to talk to them about his mental state again and find out what results if any came from yesterday's tests.
Overall the IV feeding has really improved his appearance and strength. But beyond that, I'm not seeing much improvement.
Pauline here. Still in the hospital. No results yet from yesterday's CT scan and colonoscopy. Trying to find that bug has proved to be pretty tough.
Not sure where Boone is. He's having those reactions to the drugs again. He's been lying here all morning talking to a bunch of people on the telephone. Not sure where the phone is, or who he's hearing, but he's definitely busy. He's set up a couple of meetings, canceled one, talked to someone about how they doing are after their father's death. Alright I hope. The discussions don't seem to be particularly about work anymore.
I'm afraid he's going down that delusionary path that sent him to the ICU the first time. He started talking about having scissors again.
He called me at 4am wanting to know where I was. He was having issues figuring out what was real and what was not. The phone call ended in mumbling and then he just goes away. No goodbyes, just silence. He seems very worried in these middle if the night calls...there have been 3 so far. I'm fearful that the delusions will go from merely confusing to monstrous and scary. So far, no freakish looking eyes.
They are bringing him some solid food today. He thinks he hasn't been taken of NPO status, but tried to eat a bit anyway. Finally something tasted really good...the packaged OJ. Then he tried a spoonful of Rice Krispies. Then vomited only a little. He thought that went pretty well and wants more OJ.
We are waiting on the doctors rounds. I need to talk to them about his mental state again and find out what results if any came from yesterday's tests.
Overall the IV feeding has really improved his appearance and strength. But beyond that, I'm not seeing much improvement.
Sunday, May 19, 2013
Here we go again...
Pauline
here.
(Sorry about that title line...Blogger wouldn't let me post without a title. grrrr.)
Actually
I believe this is day 79. March has 31 days minus the1st which
was day Zero. April has 30 days and now this is May 19. If my
math is correct, 30+ 30+ 19 = 79.
Day
79 was definitely better than day 77.
Day
77 was the normal 7:15 AM clinic visit. Boone was feeling
pretty bad; after all he had the colonoscopy the day before. As
we all know there is the day of fasting, and the day of the
procedure. Not much eating happened on the scoping day, he just
didn't feel well enough to eat.
When
we arrived at the clinic, there was no one at home. Peculiar.
I knocked on the door, knocked on the back door, no response.
I called their number and got a recording saying they were
closed and didn't open until 8 AM. Peculiar, our appointments
are always before 7:30. Boone was miserable. I went
outside, I've forgotten why, but in the process I ran into two other
patients and spouses that were there for early appointments. One
of the spouses, who is a nurse took charge and went somewhere in the
dark halls of SCCI and found a lone nurse lurking in the office.
By
the time she was coming back with the good news, I had retrieved the
wheelchair that I had forgotten about, and had gotten Boone in it.
We headed for the elevator, and the suddenly in front of us was Dr.
S. looking very dapper in baby blue. (It highlights his blue
eyes.) He had taken one of the patients who's wife was
struggling with her large husband, gotten him in his wheelchair and
was pushing him up to the clinic. I followed him pushing Boone
in his wheelchair. He was not happy about the mixup, and
promised me they really have their ducks in a row....apparently they
missed calling 3 patients to reschedule to later visits.
By
this time, Boone was slumped over with his head in his hands trying
to not feel so sick. I was visiting with the other couple in
the room. At one point the patient pulled his mask down...I had
no idea he looked like that! Talked to him many times, never
saw anything but eyes. HIs wife, the nurse was loaded with all
sorts of info, like one man that had been in the hospital on the BMT
ward for over a year...OMG. I can't even begin to imagine.
After
a short wait, we were ushered back to the exam room. Boone
weighed in at a strapping 116 pounds. (Oh how I wish I could
weigh that little again - it only happened for 1 day, but it was
great!)
His
thighs are thinner than my forearms. They immediately started
up an IV of saline. That's an hour drip. The results of
the colonoscopy were supposed to have been sent to Dr. S., but the
Pathologist hadn't sent them up yet.
Boone
finished up his drip and we went home. Both of us were
exhausted and went to bed to catch some z's. As always, I
turned the ringer off on my phone. After about 5 minutes I
opened my eyes and decided to check the phone. There were 2
messages from an unknown number within a couple minutes of each
other; so I called back. It was the LPN at the clinic. She
said Dr. S. wanted Boone back in the office ASAP. Bring a
bag....
I
went to wake Boone up to tell him. He broke down. He knew
they would put him in the hospital.
They
said he had an infection in his GI tract and had to be admitted back
onto the ward. Boone was miserable. Sick. Unhappy. Tired.
They
set up a CT scan that required Boone to drink 2 quarts of that nasty
gut cleaner...again. I left the hospital to get the dogs &
Leukka and head to the farm. Nothing more I could do for Boone. At
least the dogs and cat could run a bit out there.
The
infection has not yet been specifically identified. A specialist is
coming in tomorrow to see if she can figure it out. They put Boone
on IV food at the rate of 7000 calories per day. He's gained a pound
already.
He
slept pretty much all day Saturday, but today, he was feeling better.
His skin is so silky smooth. No psoriasis to be seen. He was
rewarded this afternoon by being put on soft foods rather than being
NPO. Ice cream.
We
don't know yet the criteria for release. Kill the bug? Gain X
amount of weight? Or just feeling much better and eating?
He's
asking for his book and reading glasses. Excellent.
Friday, May 10, 2013
Pauline here.
Mr. Boone is coming back.
The other night, we did what we used to do almost every evening. We played Wii - almost always frisbee golf - and Boone plays music.
His musical choice for our enjoyment was his compilation of his favorite Pink songs. Of course, you can't do Pink without "Get This Party Started".
What a wonderful song one of my favorite happy tunes. But the best part, the absolute best part was, when in the song "Stupid Girls" the line "I don't want to be a stupid girl" came around, he was shaking his ass.
Not that there is one there to shake, but I haven't seen him dance since around December. It only lasted a few seconds, but it was beautiful to behold.
Mr. Boone is coming back.
The other night, we did what we used to do almost every evening. We played Wii - almost always frisbee golf - and Boone plays music.
His musical choice for our enjoyment was his compilation of his favorite Pink songs. Of course, you can't do Pink without "Get This Party Started".
What a wonderful song one of my favorite happy tunes. But the best part, the absolute best part was, when in the song "Stupid Girls" the line "I don't want to be a stupid girl" came around, he was shaking his ass.
Not that there is one there to shake, but I haven't seen him dance since around December. It only lasted a few seconds, but it was beautiful to behold.
Wednesday, April 24, 2013
Day 52 and counting....
Pauline here again.
Boone just weighed in at 122. I swear I don't know how he's loosing weight so fast. It must be all the cream and butter. My doc laughed and said that was the Atkins diet, except for all the sugar. I had lost 7 pounds. I guess stress burns calories.
So does trying to heal.
We are back at the clinic this Monday morning, and again Nurse Steven is like a busy bee. Working his tail off. He's just taken a blood draw to see what the verdict is for today's meds, and please oh please can we stop the two a days!
One of the things we really have to watch for is any sort of rash. Last night in the Infusion Room, the nurse noticed Boone's eyelid was red. Had me take a picture to record it so the docs would be able to compare.
------
The curtain fell and time passed. Now Wednesday AM. (Day 54)
No luck on stopping the two a day drips. Just learned this morning that they want to see three consecutive negative tests results before stopping the antiviral drip.
Boone is doing well except the weight, and maybe we are seeing a slight bit of progress. Tuesday he weighed in at 121; today 121.5. We will take it.
Boone is having difficulty with the eating. He is so weak he doesn't want to eat, but knows he has to eat. The other night we had a come- to- Jesus meeting about he has a choice; eat or die. Period. It's that simple. Still it doesn't help him with the stress and anxiety of this ordeal. I'm stressed to my limit and completly worn out, I cannot imagine how tired he is.
For those of you into the numbers, his white count last I saw was 3.8; almost in normal range. His hemoglobin, hemoticrit, and neutrophil numbers are either low normal or just below normal. It's only the platelets now that are being stubborn. He's at about 25% of where he should be there, but its not particularly dangerous. I continue to be amazed that we have seen no GVHD, or any infections. So far, other than the three trips to the ER and one cardiac arrest, everything has gone very well. These doctors are definitely strutting their stuff over how well he has done. You can tell they are very pleased.
As for curing the psoriasis the hard way...I guess it is working. The chemo works on rapidly dividing cells, which includes the skin. Boone is now shedding large pieces of skin, more lizard like than the old small particle almost sandy looking dead skin. In places it is falling off so fast that the new layers are tender to touch, but it appears to be nice soft normal skin underneath. Even the blotchiness is going away.
Our issue now is he's cold and I'm constantly wanting to open the windows. For me a top down drive in the roadster is heaven, for him impossible. No doubt come next winter he will be having hot flashes while I freeze.
Pauline here again.
Boone just weighed in at 122. I swear I don't know how he's loosing weight so fast. It must be all the cream and butter. My doc laughed and said that was the Atkins diet, except for all the sugar. I had lost 7 pounds. I guess stress burns calories.
So does trying to heal.
We are back at the clinic this Monday morning, and again Nurse Steven is like a busy bee. Working his tail off. He's just taken a blood draw to see what the verdict is for today's meds, and please oh please can we stop the two a days!
One of the things we really have to watch for is any sort of rash. Last night in the Infusion Room, the nurse noticed Boone's eyelid was red. Had me take a picture to record it so the docs would be able to compare.
------
The curtain fell and time passed. Now Wednesday AM. (Day 54)
No luck on stopping the two a day drips. Just learned this morning that they want to see three consecutive negative tests results before stopping the antiviral drip.
Boone is doing well except the weight, and maybe we are seeing a slight bit of progress. Tuesday he weighed in at 121; today 121.5. We will take it.
Boone is having difficulty with the eating. He is so weak he doesn't want to eat, but knows he has to eat. The other night we had a come- to- Jesus meeting about he has a choice; eat or die. Period. It's that simple. Still it doesn't help him with the stress and anxiety of this ordeal. I'm stressed to my limit and completly worn out, I cannot imagine how tired he is.
For those of you into the numbers, his white count last I saw was 3.8; almost in normal range. His hemoglobin, hemoticrit, and neutrophil numbers are either low normal or just below normal. It's only the platelets now that are being stubborn. He's at about 25% of where he should be there, but its not particularly dangerous. I continue to be amazed that we have seen no GVHD, or any infections. So far, other than the three trips to the ER and one cardiac arrest, everything has gone very well. These doctors are definitely strutting their stuff over how well he has done. You can tell they are very pleased.
As for curing the psoriasis the hard way...I guess it is working. The chemo works on rapidly dividing cells, which includes the skin. Boone is now shedding large pieces of skin, more lizard like than the old small particle almost sandy looking dead skin. In places it is falling off so fast that the new layers are tender to touch, but it appears to be nice soft normal skin underneath. Even the blotchiness is going away.
Our issue now is he's cold and I'm constantly wanting to open the windows. For me a top down drive in the roadster is heaven, for him impossible. No doubt come next winter he will be having hot flashes while I freeze.
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