Our life with Dwight continues to resemble a day at an amusement park. But we aren't amused. The roller coaster, the tilt a whirl, and a lot of other crazy rides .
Monday Dwight continued to be confused and his conversation often confused (an amused) us. They did put the ports in and he had his first dialysis in four days. We hoped to see an improvement, but did not.
Tuesday he was very tired and informed me that God was ready for him to come home. Also the Doctors decided he was ready to go back to Mill Run. He saw angels he saw in the room and wait for them to take him to heaven. He told me he wouldn't see another shift change, done at 7 AM and 7 PM. The transfer van came at 5:30, and...
At the nursing home my sweet husband was the worst mentally I have ever seen him. Something definitely happened on the ride. Dwight says he died and they gave him an IV and revived him. He was given no IV. He was just very tired and confused, very confused. He ate very little. He insisted the south won the war. He wanted almost everything taken off his bed table. He was making a flag on it. I am calling it instant dementia.
It was a challenging evening for our family and the Mill Run staff.
If possible, yesterday (Wednesday) was worse. An new drug has been added to calm him when agitated.
Thank you for your continued interest and prayers, they are certainly giving our family added strength. Please hold the grandchildren up in prayer, they so want their grandfather to get better and come home.
Thursday, June 16, 2011
Sunday, June 12, 2011
Up and Down and Up
Friday and Saturday we continued on a downward spiral. Saturday the Doctors and nurses were quite concerned, to the point of quizzing Dwight (and I) on his DNR. I left for lunch, a nap and off to work not knowing if I would get a phone call of bad news.
The Doctors decided Dwight was sleeping too much because of the pain meds he is on. Also the baclifin, that he has been on for years. They lowered and stopped some of them. A Doctor from his family practice noticed that he hadn't had one of the IV antibiotics since Wednesday and wrote orders for it and another one that he has had in the past.
This morning he is conversing, not quite normal, but understanding our questions and giving good answers, slowly. They are going to replace the dialysis ports tomorrow and do dialysis. Maybe, maybe.....back to Mill Run soon.
I am not going to count any of it as a 'for sure'. I would love it to happen, but I know my husbands health is still percarious and will take one day, one hour at a time. Dwight belongs to the Lord and we both are at peace with whatever the Lord chooses for us.
The Doctors decided Dwight was sleeping too much because of the pain meds he is on. Also the baclifin, that he has been on for years. They lowered and stopped some of them. A Doctor from his family practice noticed that he hadn't had one of the IV antibiotics since Wednesday and wrote orders for it and another one that he has had in the past.
This morning he is conversing, not quite normal, but understanding our questions and giving good answers, slowly. They are going to replace the dialysis ports tomorrow and do dialysis. Maybe, maybe.....back to Mill Run soon.
I am not going to count any of it as a 'for sure'. I would love it to happen, but I know my husbands health is still percarious and will take one day, one hour at a time. Dwight belongs to the Lord and we both are at peace with whatever the Lord chooses for us.
Thursday, June 9, 2011
Thursday
I know many of you are checking often for reports on my wonderful husband, and I don't want to let you down. I am writing this with tears clouding my vision. The news is not the best, although there may be good news I am just not realizing yet.
Sunday morning and afternoon were definitely our high spots. Nothing short of a miracle. Even Dwight's Doctor was surprised to find him alive. And he was very much our 'Dwight'. He visited very clearly with Doctors, nurses, two Pastors, all of our family that visited.
Monday he seemed a little down from Sunday, but he had dialysis and that always tires him. Tuesday there were more Doctor's visits than he can remember. Wednesday he had dialysis again and they removed the ports from his chest. The plan is to replace them Monday. Yes, that means four days without dialysis. They will be monitoring his blood very closely.
What is it? Still not totally sure. The infectious disease Doctor isn't convinced on the pneumonia. There is no pinpoint name, just a bad infection. With the ports out (possibly the source of the infection) they hope to 'purify' his blood. More wait and see.
Last night all our children and grandchildren wanted to visit him. He said no, he didn't want them to see him like he was. I am sorry I honored that request because I found him in a worse state today. Much more repeating himself, loss of muscle control (jerking) and dozing off. I let the families know they could come for a short visit. He had two visits from family and I must say he did perk up when the kids were there.
Several of you have expressed concern for me, I do appreciate that. I am more tired than normal, I guess that is how my body/mind copes. I am trying not to let it depress me and am trusting God to do His will. God does have a reason for this, for all of our family. I am praying for each of my children and grandchildren to discover what God is teaching us through this. For all of us to understand God loves us and Papa loves us, no matter how much we don't like this.
So happy to know I have friends who are hanging in with us in support and prayers.
I am typing this outside in the cool breeze of the evening. My flowers look beautiful and fireflies are flitting around in the yard. A few birds are singing their good night song. Our maples have grown and are casting their shadow from the street light. Thank you, Tim, for not listening to me (this time) and creating this little oasis outside my back door.
I am blessed.
Sunday morning and afternoon were definitely our high spots. Nothing short of a miracle. Even Dwight's Doctor was surprised to find him alive. And he was very much our 'Dwight'. He visited very clearly with Doctors, nurses, two Pastors, all of our family that visited.
Monday he seemed a little down from Sunday, but he had dialysis and that always tires him. Tuesday there were more Doctor's visits than he can remember. Wednesday he had dialysis again and they removed the ports from his chest. The plan is to replace them Monday. Yes, that means four days without dialysis. They will be monitoring his blood very closely.
What is it? Still not totally sure. The infectious disease Doctor isn't convinced on the pneumonia. There is no pinpoint name, just a bad infection. With the ports out (possibly the source of the infection) they hope to 'purify' his blood. More wait and see.
Last night all our children and grandchildren wanted to visit him. He said no, he didn't want them to see him like he was. I am sorry I honored that request because I found him in a worse state today. Much more repeating himself, loss of muscle control (jerking) and dozing off. I let the families know they could come for a short visit. He had two visits from family and I must say he did perk up when the kids were there.
Several of you have expressed concern for me, I do appreciate that. I am more tired than normal, I guess that is how my body/mind copes. I am trying not to let it depress me and am trusting God to do His will. God does have a reason for this, for all of our family. I am praying for each of my children and grandchildren to discover what God is teaching us through this. For all of us to understand God loves us and Papa loves us, no matter how much we don't like this.
So happy to know I have friends who are hanging in with us in support and prayers.
I am typing this outside in the cool breeze of the evening. My flowers look beautiful and fireflies are flitting around in the yard. A few birds are singing their good night song. Our maples have grown and are casting their shadow from the street light. Thank you, Tim, for not listening to me (this time) and creating this little oasis outside my back door.
I am blessed.
Tuesday, June 7, 2011
A name--kinda
Not all cultures are finished growing, but the dozen or so Doctors pretty much agree on what Dwight's body is playing host to this time:
Pneumonia;
a different, nameless kind. #1) it isn't affecting his lungs. No fluid on the lungs, no problems breathing. The spot they found on his lung is not related to it at all. #2) it isn't from any conventional sources of pneumonia. It is probably from the port/catheter they use for his dialysis. They are going to remove the port/catheter, and not replace it for 7 days.
All this is so odd sounding I asked Dwight to repeat it.
Twice.
Same all three times.
Will any of this change? Maybe.
Will I be surprised? No, and I am sure you won't be either.
Monday, June 6, 2011
Monday -- some changes
Ups and downs. Such has been our life the last 14 months, and the last 60 hours.
Last evening I was not happy with the lack of muscle control I was seeing, nor with Dwight's poor conversation skills. I continued to 'nag' about his IV antibiotics. Finally the nurse checked his chart, and checked, and discovered that the orders written by our Dr at the discharge from ICU weren't in the computer, so drugs had not been delivered. So she said, but Dwight had already had some of his meds, I really think she was having difficulty reading the chart. She was scrolling up and down the chart repeatedly.
This morning, when I called to say good morning Dwight's words were, "I'm in trouble here." Then he dropped the phone. I quickly made coffee, feed the dog, and got presentable. As I was driving I called again, repeatedly, only getting a busy signal. I called the 8th floor desk and was told that Dwight was in dialysis, altho he wasn't supposed to go till 11:00. Back home to more coffee, kittens and a nap.
I have noticed that he responds better to one of the 2 antibiotics than the other.
Doctors and consults all afternoon and still no pinpointed cause or causes.
An new wrinkle, now they want to do an ultrasound of his legs, with dye. A very big NO-NO. Dye is very bad for kidneys.
Supper was very light for Dwight and now he is winding down. Ready for some boring TV and his evening nap. I remember my Dad's excuse for his after supper nap, "So I can sleep better when I go to bed."
We were really hoping that the infection would be identified by now, correct treatment started and return to Mill Run in the near future. But we are waiting.......
So thankful for much better nurses and PSA than last month.
Last evening I was not happy with the lack of muscle control I was seeing, nor with Dwight's poor conversation skills. I continued to 'nag' about his IV antibiotics. Finally the nurse checked his chart, and checked, and discovered that the orders written by our Dr at the discharge from ICU weren't in the computer, so drugs had not been delivered. So she said, but Dwight had already had some of his meds, I really think she was having difficulty reading the chart. She was scrolling up and down the chart repeatedly.
This morning, when I called to say good morning Dwight's words were, "I'm in trouble here." Then he dropped the phone. I quickly made coffee, feed the dog, and got presentable. As I was driving I called again, repeatedly, only getting a busy signal. I called the 8th floor desk and was told that Dwight was in dialysis, altho he wasn't supposed to go till 11:00. Back home to more coffee, kittens and a nap.
I have noticed that he responds better to one of the 2 antibiotics than the other.
Doctors and consults all afternoon and still no pinpointed cause or causes.
An new wrinkle, now they want to do an ultrasound of his legs, with dye. A very big NO-NO. Dye is very bad for kidneys.
Supper was very light for Dwight and now he is winding down. Ready for some boring TV and his evening nap. I remember my Dad's excuse for his after supper nap, "So I can sleep better when I go to bed."
We were really hoping that the infection would be identified by now, correct treatment started and return to Mill Run in the near future. But we are waiting.......
So thankful for much better nurses and PSA than last month.
Sunday, June 5, 2011
Dwight's 3 AM conversation
This is Dwight's story.
And while he doesn't remember a lot of what happened. And he doesn't remember anything from when his pressures were so low. And he doesn't quite remember the order that things happened. He does have some very pointed and vivid memories. Very vivid.
This is one of those memories.
And while he doesn't remember a lot of what happened. And he doesn't remember anything from when his pressures were so low. And he doesn't quite remember the order that things happened. He does have some very pointed and vivid memories. Very vivid.
This is one of those memories.
These are his words.
At about quarter 'til three this morning, I woke up. And I knew that I was approaching a moment of decision. So, I began to pray. I told the Lord that I'm ready to go. You know, Lord, that I have served you well; I have followed your will, and I'm ready to go.
On the other hand, I would like to stay. So, I'm ready to go, and I'm ready to stay. But on the other hand. I would prefer to stay. I would love the chance to love my wife in person for a much longer time than I have. I want to kiss her for a long, long time.
And I want to love my children. Much longer and much better than I have.
And you know, I dearly love my grandchildren. And how I would love to mentor them and teach them some of the tricks of the trade I've learned over the years and give them a head start on a career or just a hobby. And I want to hug my little girls. To hear about all their most recent toys for a long, long, long time.
So Lord, I prefer to stay. If you would grant me my wish, I would be a very grateful man. And I promise to do all of those things to the best of my ability. But if you want me to come home, I'm okay with that, too. It's your choice Lord. You know my wishes, but it is your choice.
Dwight said, "So apparently the Lord granted me my desires. And I am here. Back again. Borrowing Susie's blog to thank you for your prayers. For me and for my family."
Saturday, June 4, 2011
ICC
Interesting typing in plastic gloves, am sure I will made plenty of typos.
In the ER Dwight's BP and heart rate went quite low, he also was unresponsive. the Dr, who will remain nameless (altho I could call him a few names, including a couple Danish not nice words I know)--decided he needed a drug to stop all Dwight's pain meds from working. Before I could say, excuse me, what are you doing, it was in him.
I can not tell you the horrors we experienced as he instantly went in drug withdraw and full body intensive pain. It was so bad that all the ER personnel came gawking. In the intensive pain and screaming, Dwight managed to pull out the IV they needed to administer more pain meds.
It has been a rough time. We are in ICC. The above mentioned drug has wore off and the pain meds, plus more, are back on line. His BP and heart rate are again low, dangerously low. The same Dr suggested the drug again, it is probably a good thing he was on the other side of the bed and other people were in the room. (I had told at least three times we would NEVER do that to him again.)
We are waiting for the antibiotics to kick in. As it stands right now, it is not the best situation. We are trusting the Lord for healing. We understand that not all healing is on this side of glory. God is our Lord, we are committed to His will and are thankful for His love for us.
Thanks, again to all who care and pray.
In the ER Dwight's BP and heart rate went quite low, he also was unresponsive. the Dr, who will remain nameless (altho I could call him a few names, including a couple Danish not nice words I know)--decided he needed a drug to stop all Dwight's pain meds from working. Before I could say, excuse me, what are you doing, it was in him.
I can not tell you the horrors we experienced as he instantly went in drug withdraw and full body intensive pain. It was so bad that all the ER personnel came gawking. In the intensive pain and screaming, Dwight managed to pull out the IV they needed to administer more pain meds.
It has been a rough time. We are in ICC. The above mentioned drug has wore off and the pain meds, plus more, are back on line. His BP and heart rate are again low, dangerously low. The same Dr suggested the drug again, it is probably a good thing he was on the other side of the bed and other people were in the room. (I had told at least three times we would NEVER do that to him again.)
We are waiting for the antibiotics to kick in. As it stands right now, it is not the best situation. We are trusting the Lord for healing. We understand that not all healing is on this side of glory. God is our Lord, we are committed to His will and are thankful for His love for us.
Thanks, again to all who care and pray.
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