Isn't that a good question? I think it's to relieve the guilt on the part of the visitor, not anything for the patient. My last post was Wednesday. Thursday, both of his daughter, son, his wife and 3 of 4 kids came to visit. My sister, her hubby, my brother, his wive and 2 kids came. It was a complete total zoo.....and NOT what he needed that day.
But I can't deny them. I can't tell them this is not a good time. So I let groups of 4 in at a time. UGH!
His son, the PharmD - the guy who has a doctorate in pharmacology, acted like I didn't exist. Seriously! He told his dad that he needed to have the defibrillator implanted. "That's what's best for you, dad." And he has NOT seen is father in 2 years! Yep, I just wanted to spit nails, but I kept my mouth shut and smiled.
His daughter did her usual drama thing, "oh daddy, oh daddy, you have to promise me you are going to get well. You have to - for me!"
Enough said about them?
The dynamics were interesting to watch. His family was very dramatic, sad, acting like they were at death's door or a funeral. My siblings just talked to him like it was a normal day. Told them things they were doing or working on. Had a very interactive conversation with him as though we were home, sitting in our living room.
That afternoon, he told his docs that he did not want the life vest and he did not want the implant. We had done some research. With the implant, you cannot use a cell phone, iPad, ear buds within 6" of the implant. He uses earbuds all the time and loves to rest his iPad on his chest to watch movies (due to his poor vision). We talked about it. I told him the choice was his. I don't know what I would do if it were me and I told him that. He made the decision and while I'm not sure I agree 100%, I have to support his choice.
I suppose when it's your heart and someone tells you the vessels are 100% blocked, you have a big enough scare without considering the options for surgery. Would his kidneys survive? Would his heart survive? It can be minor, but it can also turn into a major operation. He has opted not to do it. And with that decisions, there just isn't anything else they can do for him. So he was discharged home yesterday under hospice care.
The discharge process took from 10 am to 2 pm. Mostly waiting for one department or another to come and have him sign their set of papers. We were home by 4 pm and hospice came. They had an intake person who was here asking questions until 6. Then an RN came and did her complete evaluation and didn't leave until 8 pm. After that I still had to run to the drug store and buy a pulse oximeter. I had no idea that they cost $65!!! And then go get a few groceries. I got home at 9:15 pm and then had to deal with the pups.
All night long they whined and whimpered. They wanted in bed with him. I have told him for years that he cannot let them sleep with him in case something like this happens. Well, he never listened to me. After a night with very little sleep, I wasn't in a good mood this morning. His brother is here (lives about 800 miles away) and staying for a few days. The 3 of us came up with a plan that the pups will go home with the brother. Hubby will get himself well enough to take care of them and we'll go get them. That will give me some relief because I told both of them that there's no way I can care for the dogs and for him.
I know it will depress him something terrible and he will miss them horribly. But one has to look at the overall situation. He is a "fall risk". We now have oxygen lines throughout the bedroom. He does not need to be getting up in the middle of the night to tend to the dogs in his condition. We tried having them sleep in my room last night and they just whined for him. Literally whined all night long.
I'm letting his brother help him this morning while I take a bit of a break from it all. I'm just so exhausted that I can barely function. Health wise....he had a bad night. His oxygen level is good, but his heart is beating about 112 and that is making him hot. We have the AC set to 70 and I'm wearing a jacket (it's about 95 outside!). We asked hospice for anti-anxiety drugs and pain meds. I don't know if they are coming back today, or if it will be Monday. The intake people didn't know.
I'm taking this one step at a time. Not sure what else you can do. I don't like the idea of hospice staff coming and going. It feels like an intrusion into our life. I'm a pretty private person. I don't know how I feel about people coming when there is a "death call". He needs to see his family and his friends.....I just wish they would come on a regular basis.
Today, I'm puttying and painting the slat wall in his room. Then I will put up shelves. For all the medical supplies they are bringing in. So I should back up. Thursday night, 2 of my sisters came over and we gutted his room. Replicated what he had in there out in the garage. He has a 3D printer and does a lot of electronics. We had to. With hospice staff and oxygen....there just had to be more space. That left a slat board wall empty. Today I will get that set up and then we have to move his computer and all those components to another table. I can remove a huge table and get a recliner in the corner as he's not comfortable in his bed.
It's an interesting concept that life goes on when death is in the room. Will he improve? No idea. He could go like this for a few years. He could die today. But the rest of life just keeps on going on. I will try to update more often because keeping notes is good therapy for me - and it gives all of us a record of what the last days are like.
DW
Saturday, July 14, 2018
Wednesday, July 11, 2018
100% blockage of heart
The actual words the doctor used were "100% blockage of natural vessels". What are "natural vessels"? They are the veins in your heart that you are born with. That is what his angiogram showed. The 3 bypass veins have some blockage. They are too fragile to put a stint in. In order to clean out the plaque, they would have to go in with a DRILL and literally drill out the plaque. Instead they are going to use drug therapy to try and increase the blood flow in his heart.
Which is at 30%. So during the angiogram they were not able to stint anything.
He probably had another heart attack around 7 pm yesterday. I had come home. He was resting when I left. I cannot drive at night. It is 3 am. I cannot sleep. I have a bag packed to go and stay. I swore I would never do that again. But I will.
Is he dying? This time? Has he died and they haven't called me yet? It is nearly impossible to keep from having panic. I honestly do not want him to go just yet. We had such a wonderful time overall on this last trip. But I don't want him to suffer and with that much blockage, how can he not?
A little before 7 pm last night I called him. I face-timed him as I wanted him to see is beloved chihuahuas. He said, "can I call you back? I'm having a really bad time right now and I have 8 people in here with me."
So I sat here for 45 minutes trying to decide if I should drive back or not. An hour drive. I kept waiting thinking he would call back. He didn't. I called my sister. I packed a bag to go and just stay. After 45 minutes, I called again. He answered and turned on face time. He said he thought he had gotten over heated and that brought on severe chest pain. They brought in a fan, re-hooked up his nitro drip and were adjusting meds. He had gotten sick to his stomach. But he was better. He did not want me to come up. He wanted me to get a good nights sleep. And honestly, I was so completely, utterly exhausted I promised him I'd just go to bed. Which I did.
And now it's 3 am and I'm wide awake. And can think. Was that another heart attack? More damage? How can he possibly survive this?
His brother is driving about 900 miles to come see him. I have called his daughter who has pancreatitis and just got out of the ER and isn't well enough to drive an hour to come see him. She has called her brother who is estranged from his dad at the moment. Perhaps this will remedy that? I really can't worry about that dynamic at the moment.
30% heart flow. 35% kidney function before they injected him with dye (they will run another kidney function test later today), 100% blockage of his natural veins. Partial blockage of his bypasses. My life will change one way or the other.
I know that I have to stay positive around him. So yesterday afternoon we sat and planned our next camping trip. For late October. I told him he should be all well by then. We decided where we want to go - places he wants to see. I called to make reservations at a site we had heard about and he was so happy that I was able to get us in (sometimes you need to book a year in advance for these spots). I realize that I may have to cancel, but it kept him motivated yesterday. I have learned that you need a goal in life to keep you going. I never dreamed that a camping spot would be a "goal"!
I have moments when I go completely numb. I can't process anything. Usually when the doctor is giving us more information. I know that's denial. Pure and simple. I have been telling everyone that he will be fine. When I woke up I realized that he won't. It's time to tell people to come say their good byes and if he somehow survives this time, they can come say them again. At this very moment I don't think I have the emotional and physical strength it will take me to get through today.....but I also know that it will come from somewhere. I'm leaving as soon as it gets light outside.
There are moments when I go through the entire house in my head, rearrange everything so we can get a hospital bed, oxygen tank, etc. in his room. My neighbors are really young and have offered to help. I will take them up on that one when the time comes. It's not "if the time comes", but rather "when the time comes." If he even gets to come home.
How many more heart attacks can his body withstand? I don't think there is an answer to that. Yet it's one of the zillion questions you ask yourself at this very moment. We say goodbye to each other every time I leave the room. I wonder if he will still be there when I come back.
This hospital has been amazing. The staff is incredible. They are in his room every 10 minutes if not more often. We've never experienced that. His every need is being met. The bed works! All of the machines work. None of our past problems with hospital stays. We have even joked about it. But it is a really nice thing when you don't have to be dealing with equipment failure. When he had his spinal fusion surgery, he would call me at home to call the nurse's station because his call button wouldn't work. At this hospital, I already trust them to be there checking on him every 10 minutes. He knows they will be back. That definitely relieves a level of anxiety for both of us.
When this moment arrives, everything else in life stops. I literally have no appetite. I put my phone on do not disturb when I am with him. I am basically writing this so I don't forget. You cannot stop the "what-if's". They swirl around in your brain non-stop. But you simply don't answer them. They just hang there. Then you tell yourself and him and everyone around you that we just take this one step at a time. Get him to ER. Get him to a cardiac hospital. Get the angiogram done and see what the results are. Get the new medications in him and see if he has an allergic reaction, see how his kidneys handle them, see if he has more pain. Wait for the next suggestion from the doctor.
After his angiogram yesterday, the surgeon said, "we do not know where the heart attack is coming from." To me this meant that there is no single spot of blockage, nothing they can directly track the heart attack to. But with 100% blockage I'm thinking that it came from everywhere. There is no single spot.....it's his heart stopping. With 30% blood flow, oxygen is not getting to his brain. Is a stroke next?
Then I remind myself that I cannot do the "what-if" game. We simply take this one moment at a time. Today I will start calling family and tell them to come visit. That's the next step. Saying goodbye when you don't know if it's goodbye. Really hard to do.
DW
Which is at 30%. So during the angiogram they were not able to stint anything.
He probably had another heart attack around 7 pm yesterday. I had come home. He was resting when I left. I cannot drive at night. It is 3 am. I cannot sleep. I have a bag packed to go and stay. I swore I would never do that again. But I will.
Is he dying? This time? Has he died and they haven't called me yet? It is nearly impossible to keep from having panic. I honestly do not want him to go just yet. We had such a wonderful time overall on this last trip. But I don't want him to suffer and with that much blockage, how can he not?
A little before 7 pm last night I called him. I face-timed him as I wanted him to see is beloved chihuahuas. He said, "can I call you back? I'm having a really bad time right now and I have 8 people in here with me."
So I sat here for 45 minutes trying to decide if I should drive back or not. An hour drive. I kept waiting thinking he would call back. He didn't. I called my sister. I packed a bag to go and just stay. After 45 minutes, I called again. He answered and turned on face time. He said he thought he had gotten over heated and that brought on severe chest pain. They brought in a fan, re-hooked up his nitro drip and were adjusting meds. He had gotten sick to his stomach. But he was better. He did not want me to come up. He wanted me to get a good nights sleep. And honestly, I was so completely, utterly exhausted I promised him I'd just go to bed. Which I did.
And now it's 3 am and I'm wide awake. And can think. Was that another heart attack? More damage? How can he possibly survive this?
His brother is driving about 900 miles to come see him. I have called his daughter who has pancreatitis and just got out of the ER and isn't well enough to drive an hour to come see him. She has called her brother who is estranged from his dad at the moment. Perhaps this will remedy that? I really can't worry about that dynamic at the moment.
30% heart flow. 35% kidney function before they injected him with dye (they will run another kidney function test later today), 100% blockage of his natural veins. Partial blockage of his bypasses. My life will change one way or the other.
I know that I have to stay positive around him. So yesterday afternoon we sat and planned our next camping trip. For late October. I told him he should be all well by then. We decided where we want to go - places he wants to see. I called to make reservations at a site we had heard about and he was so happy that I was able to get us in (sometimes you need to book a year in advance for these spots). I realize that I may have to cancel, but it kept him motivated yesterday. I have learned that you need a goal in life to keep you going. I never dreamed that a camping spot would be a "goal"!
I have moments when I go completely numb. I can't process anything. Usually when the doctor is giving us more information. I know that's denial. Pure and simple. I have been telling everyone that he will be fine. When I woke up I realized that he won't. It's time to tell people to come say their good byes and if he somehow survives this time, they can come say them again. At this very moment I don't think I have the emotional and physical strength it will take me to get through today.....but I also know that it will come from somewhere. I'm leaving as soon as it gets light outside.
There are moments when I go through the entire house in my head, rearrange everything so we can get a hospital bed, oxygen tank, etc. in his room. My neighbors are really young and have offered to help. I will take them up on that one when the time comes. It's not "if the time comes", but rather "when the time comes." If he even gets to come home.
How many more heart attacks can his body withstand? I don't think there is an answer to that. Yet it's one of the zillion questions you ask yourself at this very moment. We say goodbye to each other every time I leave the room. I wonder if he will still be there when I come back.
This hospital has been amazing. The staff is incredible. They are in his room every 10 minutes if not more often. We've never experienced that. His every need is being met. The bed works! All of the machines work. None of our past problems with hospital stays. We have even joked about it. But it is a really nice thing when you don't have to be dealing with equipment failure. When he had his spinal fusion surgery, he would call me at home to call the nurse's station because his call button wouldn't work. At this hospital, I already trust them to be there checking on him every 10 minutes. He knows they will be back. That definitely relieves a level of anxiety for both of us.
When this moment arrives, everything else in life stops. I literally have no appetite. I put my phone on do not disturb when I am with him. I am basically writing this so I don't forget. You cannot stop the "what-if's". They swirl around in your brain non-stop. But you simply don't answer them. They just hang there. Then you tell yourself and him and everyone around you that we just take this one step at a time. Get him to ER. Get him to a cardiac hospital. Get the angiogram done and see what the results are. Get the new medications in him and see if he has an allergic reaction, see how his kidneys handle them, see if he has more pain. Wait for the next suggestion from the doctor.
After his angiogram yesterday, the surgeon said, "we do not know where the heart attack is coming from." To me this meant that there is no single spot of blockage, nothing they can directly track the heart attack to. But with 100% blockage I'm thinking that it came from everywhere. There is no single spot.....it's his heart stopping. With 30% blood flow, oxygen is not getting to his brain. Is a stroke next?
Then I remind myself that I cannot do the "what-if" game. We simply take this one moment at a time. Today I will start calling family and tell them to come visit. That's the next step. Saying goodbye when you don't know if it's goodbye. Really hard to do.
DW
Monday, July 09, 2018
He had a heart attack this morning.
It was major. I woke up about 5:30 am and he was coughing so hard I thought he was vomiting. I went in to check on him and he said, "I think you are going to have to take me to the hospital." I said to let me get dressed. When I went back he had tried to get up to put his shoes on and he couldn't and said I needed to call 911. Which I did.
They took him to the local ER and I was right behind them. They did a heart enzyme test called torponin. I had never heard of it. Normal is .02 and he was at an 8. By 2 pm that had gone up to 81 and it will continue to rise for 24 -26 hours after the heart attack.
The local hospital wanted to transfer him by ambulance to a facility about an hour away that has a cardiac unit. He did not want to go. He wanted to come home and start palliative care. He had an excellent physician who told him that he could do that, but he would surely die. He thought that it could be something quite simple like just getting a stint and he could be back home in 2-3 days and not suffer.
So off he went in the ambulance. I'm glad he agreed. Nothing worse than watching the person you love suffering.
I came home, gathered a few things and one of my sisters rode up with me while the other one followed in her car. Incredible sisters who drop everything at a phone call!
They did tests all day long. Excellent care team - I'm so impressed. They worked first to get him comfortable, breathing with no struggle and as stable as possible. 3 or 4 EKGs, a heart ultrasound, so many labs I can't count them. They need to do an angiogram. That's the test where they run dye through his heart to see where the blockage is. The dye is extremely hard on kidneys and can cause them to fail. So they decided to hydrate him overnight with iv fluids and do the angiogram in the morning.
We had rounds of discussions about this Humulin RU 500. I was advocating for him every second of the way. I had grabbed his and took it with me. At first they were going to convert the 100 and administer that. I told them about past problem we've had with that. True to form, the hospital pharmacy does not stock RU500. So finally it was agreed that he could use his own, but they will inject it and keep it in their pharmacy. I'm fine with that! I think the clincher was when I told the cardiac MD that he had crashed on the operating table during his spinal fusion surgery.....they decided I was dead serious and knew what I was talking about.
Everyone was pleased and impressed with my spreadsheet of every lab he has had done since 2006. They couldn't believe it. I also had lists of all of his medications, his allergies, his medical history with dates.....I doubt they've ever had a patient so prepared. But I have learned that if you present all that - they know that you know what's going on and they pretty much have to be honest and up front.
And I made him be honest about his marijuana edibles.
Things are changing in the medical world. They will honor his DNR. So if he has a major heart attack, they will not put him on a ventilator, etc, trying to force him to stay alive.
And I stayed true to my promise after the last hospitalization. I drove the hour back home and will spend the night here. I will go back tomorrow for the angiogram.....then I will not be going back every day. I just can't. I am 9 years older than when he had his open heart surgery. I now know how important it is that I take care of myself.
If you read my last post, you know that we were expecting something like this to happen. Mentally, we were ready. There was no panic. We just went through the drill of getting things he might need while in the hospital, making sure the pups were taken care of, taking things that I might need for the day, grabbing the RU500 and needles. We had just talked yesterday morning about his symptoms and how close I thought he was to having a heart attack.
He is not stable tonight. He could have another heart attack overnight. We are both ok with whatever happens. I told him how much I will miss him. He told me things that he wants done. No matter what happens, it will be ok.
I'm going to get a good night's sleep so I can face tomorrow.
DW
They took him to the local ER and I was right behind them. They did a heart enzyme test called torponin. I had never heard of it. Normal is .02 and he was at an 8. By 2 pm that had gone up to 81 and it will continue to rise for 24 -26 hours after the heart attack.
The local hospital wanted to transfer him by ambulance to a facility about an hour away that has a cardiac unit. He did not want to go. He wanted to come home and start palliative care. He had an excellent physician who told him that he could do that, but he would surely die. He thought that it could be something quite simple like just getting a stint and he could be back home in 2-3 days and not suffer.
So off he went in the ambulance. I'm glad he agreed. Nothing worse than watching the person you love suffering.
I came home, gathered a few things and one of my sisters rode up with me while the other one followed in her car. Incredible sisters who drop everything at a phone call!
They did tests all day long. Excellent care team - I'm so impressed. They worked first to get him comfortable, breathing with no struggle and as stable as possible. 3 or 4 EKGs, a heart ultrasound, so many labs I can't count them. They need to do an angiogram. That's the test where they run dye through his heart to see where the blockage is. The dye is extremely hard on kidneys and can cause them to fail. So they decided to hydrate him overnight with iv fluids and do the angiogram in the morning.
We had rounds of discussions about this Humulin RU 500. I was advocating for him every second of the way. I had grabbed his and took it with me. At first they were going to convert the 100 and administer that. I told them about past problem we've had with that. True to form, the hospital pharmacy does not stock RU500. So finally it was agreed that he could use his own, but they will inject it and keep it in their pharmacy. I'm fine with that! I think the clincher was when I told the cardiac MD that he had crashed on the operating table during his spinal fusion surgery.....they decided I was dead serious and knew what I was talking about.
Everyone was pleased and impressed with my spreadsheet of every lab he has had done since 2006. They couldn't believe it. I also had lists of all of his medications, his allergies, his medical history with dates.....I doubt they've ever had a patient so prepared. But I have learned that if you present all that - they know that you know what's going on and they pretty much have to be honest and up front.
And I made him be honest about his marijuana edibles.
Things are changing in the medical world. They will honor his DNR. So if he has a major heart attack, they will not put him on a ventilator, etc, trying to force him to stay alive.
And I stayed true to my promise after the last hospitalization. I drove the hour back home and will spend the night here. I will go back tomorrow for the angiogram.....then I will not be going back every day. I just can't. I am 9 years older than when he had his open heart surgery. I now know how important it is that I take care of myself.
If you read my last post, you know that we were expecting something like this to happen. Mentally, we were ready. There was no panic. We just went through the drill of getting things he might need while in the hospital, making sure the pups were taken care of, taking things that I might need for the day, grabbing the RU500 and needles. We had just talked yesterday morning about his symptoms and how close I thought he was to having a heart attack.
He is not stable tonight. He could have another heart attack overnight. We are both ok with whatever happens. I told him how much I will miss him. He told me things that he wants done. No matter what happens, it will be ok.
I'm going to get a good night's sleep so I can face tomorrow.
DW
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