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.
Thursday, May 30, 2013
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.
-------
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.
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