About Dave Kingston
Saturday, January 31, 2004
MORE BIG NEWS
It's another huge milestone.
Dr. Cain just left DaySpring after removing Dave's trach! He was in the room with a nurse to assist, but according to Dave Jr., he had removed the trach in about 30 seconds. It wasn't any big deal to remove. The small hole closed up on it's own in a few minutes, and will slowly heal over the next few days.
Now, we can start the transition back to solid food. For a while, Dave will be eating soft foods, slowly working his way back to regular foods. He's start eating more, and they will cut back on the tube feed as he gets his nutrition through real food. The next milestone, removing the stomach tube, should happen within about a month.
Next step -- Miami Valley's rehab unit!
It's another huge milestone.
Dr. Cain just left DaySpring after removing Dave's trach! He was in the room with a nurse to assist, but according to Dave Jr., he had removed the trach in about 30 seconds. It wasn't any big deal to remove. The small hole closed up on it's own in a few minutes, and will slowly heal over the next few days.
Now, we can start the transition back to solid food. For a while, Dave will be eating soft foods, slowly working his way back to regular foods. He's start eating more, and they will cut back on the tube feed as he gets his nutrition through real food. The next milestone, removing the stomach tube, should happen within about a month.
Next step -- Miami Valley's rehab unit!
Friday, January 30, 2004
Some Big News
I received this picture from Dave Jr. on Thursday night. It's not a great picture, but it makes me so happy to see Dave eating on his own that I wanted to share this with you.
Here is the big new: We got the word from Miami Valley today that Dave has been accepting into their inpatient rehab program. He will be seen by a team that specialized in stroke rehab. The program is not just for the patient. The family must also participate so that we learn how to work with Dave.Jan has made Dave's recovery her full time job since the start, and Dave Jr. will be able to participate during the day since he works so close to Miami Valley.
Miami Valley wants to wait until a few days after the trach is removed before they admit him. We are expecting Dr. Cain to perform this on Saturday. We will know sometime next week when Dave will move to Miami Valley.
The next phase is about to begin, and we are very excited.
I received this picture from Dave Jr. on Thursday night. It's not a great picture, but it makes me so happy to see Dave eating on his own that I wanted to share this with you.
Here is the big new: We got the word from Miami Valley today that Dave has been accepting into their inpatient rehab program. He will be seen by a team that specialized in stroke rehab. The program is not just for the patient. The family must also participate so that we learn how to work with Dave.Jan has made Dave's recovery her full time job since the start, and Dave Jr. will be able to participate during the day since he works so close to Miami Valley.
Miami Valley wants to wait until a few days after the trach is removed before they admit him. We are expecting Dr. Cain to perform this on Saturday. We will know sometime next week when Dave will move to Miami Valley.
The next phase is about to begin, and we are very excited.
Monday, January 26, 2004
Dave Has a Snow Day
This morning, Miami Valley's rehab unit postponed Dave's evaluation due to the weather. They will come on Wednesday to evaluate him for their stroke rehab program. We believe he will qualify for their program, and hope that he can start it soon.
After six months, another big event happened today. Dave's catheter was pulled. Dave was given a pain pill before they started, and they actually pulled it during a nap. He didn't wake up, and we hope that he doesn't hurt too much when he does wake up.
We don't have a definite day and time for Dr. Cain and the trach evaluation. We believe he is stopping by on Wednesday. We'll let you know what happens.
This morning, Miami Valley's rehab unit postponed Dave's evaluation due to the weather. They will come on Wednesday to evaluate him for their stroke rehab program. We believe he will qualify for their program, and hope that he can start it soon.
After six months, another big event happened today. Dave's catheter was pulled. Dave was given a pain pill before they started, and they actually pulled it during a nap. He didn't wake up, and we hope that he doesn't hurt too much when he does wake up.
We don't have a definite day and time for Dr. Cain and the trach evaluation. We believe he is stopping by on Wednesday. We'll let you know what happens.
Thursday, January 22, 2004
Dave Cracks a Joke
I love when I have something this fun to share. Tonight, Dave Jr. and Dave were talking in the room when one of Dave's regular nurses came in and commented that they looked alike. Dave Jr. asked Dave if he thought they looked alike, and he said "No, I look better!" and started laughing. Dave Jr. asked him who told him that he was better looking, and Dave replied by pointing to his chest. He laughed at his own joke for so long that Dave Jr. had time to grab his camera and snap this picture.
On a bit more serious note, we have two important appointments setup for next week. On Monday, Miami Valley's rehab unit will evaluate Dave. And on Wednesday, it's the return of Dr. Cain to evaluate removing the trach. It is possible that he will remove the trach on the spot. We'll keep you up-to-date as things happen.
I love when I have something this fun to share. Tonight, Dave Jr. and Dave were talking in the room when one of Dave's regular nurses came in and commented that they looked alike. Dave Jr. asked Dave if he thought they looked alike, and he said "No, I look better!" and started laughing. Dave Jr. asked him who told him that he was better looking, and Dave replied by pointing to his chest. He laughed at his own joke for so long that Dave Jr. had time to grab his camera and snap this picture.
On a bit more serious note, we have two important appointments setup for next week. On Monday, Miami Valley's rehab unit will evaluate Dave. And on Wednesday, it's the return of Dr. Cain to evaluate removing the trach. It is possible that he will remove the trach on the spot. We'll keep you up-to-date as things happen.
Wednesday, January 21, 2004
A Little More Every Day
We've been busy adjusting to life after Medicare and preparing for Dave's next steps -- rehab and trach removal. We don't have any details today, but expect we will have news to announce soon.
Dave Jr. continues to give Dave evening snacks of juices and ice cream, and do various therapies with him. Some nights they focus on speech, and tonight, they worked on having Dave sit on the edge of his bed.
We've been busy adjusting to life after Medicare and preparing for Dave's next steps -- rehab and trach removal. We don't have any details today, but expect we will have news to announce soon.
Dave Jr. continues to give Dave evening snacks of juices and ice cream, and do various therapies with him. Some nights they focus on speech, and tonight, they worked on having Dave sit on the edge of his bed.
Wednesday, January 14, 2004
Dave Screams for Ice Cream
After 174 days of living off liquids running through tubes into his body, Dave has had his first tastes of real food!
Tuesday night, Dave Jr. got the brilliant idea that it was time to try some ice cream. DaySpring has an ice cream parlor for it's residents, and so Dave was able to have his choice between orange sorbet and vanilla ice cream. In the end, he has about 2 spoons of vanilla ice cream.
Tonight, when Dave Jr. arrived at DaySpring, his first stop with Dave was the ice cream parlor. Along with the ice cream, vanilla again, Dave also had a few sips of what they call "honey orange juice"-- a thick orange flavored drink. It was lip-smacking good!
So, while we will still probably have to go through with the swallow test, there is no doubt in our minds that Dave's swallow is perfect!
Also, Dave has been receiving weekly Healing Touch from a friend of mine, Jan Wooles. Several years ago, Grandview offered this training to their nursing staff, and offered it as a supplement to traditional medical care. There are lots of hospitals that have documented how much it can help patients, and it is very popular in Cincinnati hospitals. Dave is responding well.
After 174 days of living off liquids running through tubes into his body, Dave has had his first tastes of real food!
Tuesday night, Dave Jr. got the brilliant idea that it was time to try some ice cream. DaySpring has an ice cream parlor for it's residents, and so Dave was able to have his choice between orange sorbet and vanilla ice cream. In the end, he has about 2 spoons of vanilla ice cream.
Tonight, when Dave Jr. arrived at DaySpring, his first stop with Dave was the ice cream parlor. Along with the ice cream, vanilla again, Dave also had a few sips of what they call "honey orange juice"-- a thick orange flavored drink. It was lip-smacking good!
So, while we will still probably have to go through with the swallow test, there is no doubt in our minds that Dave's swallow is perfect!
Also, Dave has been receiving weekly Healing Touch from a friend of mine, Jan Wooles. Several years ago, Grandview offered this training to their nursing staff, and offered it as a supplement to traditional medical care. There are lots of hospitals that have documented how much it can help patients, and it is very popular in Cincinnati hospitals. Dave is responding well.
Saturday, January 10, 2004
Meaty Update
One strange fact I've discovered is that it is harder for me to keep the site updated while I'm in Ohio. Partly, it's because my time is much more limited, but partly, it's because most of my attention to Dave is directed at administrative things, things that aren't helpful for all of you to know. Now that I'm back in Phoenix, and have some perspective on the situation, I can provide you with a substantial update about Dave's recent progress.
Before this started, our family knew nothing about stroke recovery. We are learning a lot as we work through this. One of the surprising things is that recovery is not steady and obvious. In fact, it can seem like one step forward, one step sideways, another step forward, and one step back. You can't judge progress by comparing today against yesterday. You have to look at the bigger picture.
Dave's recovery has always been complicated by medical issues. If he had not gotten bronchitis, for example, he would not have been slowed down by ventilator, then oxygen, then the trach. He would have had the strength to start a stroke rehab program right out of the Dayton Heart Hospital in September. He needed most of his strength to fight the bronchitis, leaving very little energy for physical and speech therapy. His ulcer was another medical complication that slowed his progress, one that we didn't learn about until recently. And there have been others. The effect of these complications, however, is that Dave has laid in a bed longer and longer, making his physical recovery harder with each week, and slowing his overall progress.
In the fall, Dr. Cain warned us that many of the patients in Dave's condition do not make it because they fall into a pattern of setbacks. He said that patients typically get a series of respiratory infections that continually weaken the patient until they don't have the strength to recover. As you can see from our record here, Dave has avoided that situation. He has not had a series of respiratory setbacks. He's had steady, albeit slow, recovery without any additional complications. Dr. Cain has been surprised to see how well Dave has done, and very pleased to see he has avoided that problem. We are grateful, because we knew that if that pattern started, the chances for a positive outcome were slim.
Dave's doctors determined a month ago that his trach could be removed. It has stayed through the last month out of caution -- with the flu season this year so bad, we didn't want to rush to remove the trach in case Dave would get sick. It would be much harder on him if we removed the trach, and then had to reinstall it later. Dr. Cain is evaluating Dave within the next week, and we fully expect the trach to be removed very soon. We'll let you know when that evaluation and procedure are scheduled.
Along with the trach, Dave's swallow evaluation needs to be completed. We've mentioned this several times here. We have known for some time that it needs to be done, but the priority for doing it seems to change all of the time. Dave's former speech therapist (more about that later) believes that Dave's swallow is fine, but there are things that watching someone swallow doesn't tell you, and this test will show. We don't expect any sort of bad news in this test result.
With the trach removed, and a good swallow evaluation, Dave will be ready to begin eating solid foods again. He's been living on a liquid something like Slim-Fast or Ensure that goes in a tube directly to his stomach. There's not much enjoyment in that type of food! There will be a transition time where Dave will begin drinking, and then eating soft liquids, and working his way back to steak and potatoes. The food tube will stay in place until the transition is complete, and Dave begins to get all of his nutrition through solid foods. While some people do have problems getting back on solid foods, we don't anticipate Dave will have any problems. We know he misses his favorite foods, and is eager to get back to them.
Also with the trach removed, there will be no obstacle to Dave's speech. We have been disappointed with the speech therapist who has been seeing Dave, and we are looking to start with a new one very soon. With all of his lung and breathing complications, Dave is having some trouble coordinating his breathing with talking. It's something we all learned to do when we started talking, and Dave must relearn this a bit. Sometimes when he speaks to us, you can understanding him clearly the first time, and even hear him across the room. Most of the time, his voice is quite whispery and it takes several attempts to figure out what he is saying. With the trach gone, and some good speech therapy to coordinate his breathing, we expect Dave to being talking clearly in the near future. We know from an earlier test that there was no damage to his vocal chords from his stroke. There is a chance that the trach may have done some throat damage, but that isn't very common. When this is done, Dave may have a softer voice than before, but we don't expect any limitations to his speaking.
Since Dave's ulcer was discovered, there has been quite of bit of change in Dave's physical therapy progress. Immediately after he returned from Grandview, Dave had a huge jump in his abilities that surprised his therapists. We believed that this change showed us how much his ulcer had been complicating his recovery. But just two weeks later, the same therapists were telling us the opposite, the Dave was doing poorly, so poorly that they were cutting back his therapy schedule because he wasn't getting enough benefit.
Our family was totally shocked by this series of events, and we started talking at length with Dr. Hunter, the DaySpring house physician. After several weeks of talking and trying some things, we discovered that Dave had started some new medications when he left Grandview, and there were some adjustments that needed to be made. Dr. Hunter discovered that Dave was getting one drug first thing in the morning, and the most common side effect of this drug was drowsiness! No wonder Dave wasn't doing well in his morning therapy right after taking this!
Dr. Hunter adjusted the timing and the dosage of some of Dave's medications, and the change in Dave in the last ten days has been dramatic. I can't tell you how frustrating it has been for the family to watch Dave seem to slow down his progress, only to learn that it was because his medical situation needed more management. We are grateful to Dr. Hunter that he dug into the situation and found the causes for the progress slowdown. In the last week, Dave has started moving in ways that we have never seen before. We are working with the physical therapy staff to have Dave evaluated for an intensive in-patient stroke rehab program, and expect to announce in the coming weeks when and where this will start.
After rehab, Dave is going home. We know that just being home will help Dave immensely. It won't be too long, now.
The only thing I will share about the administration of Dave's health and insurance is this -- our family sincerely hopes that none of you ever has someone you love go this far into the medical system. Even with Dave's good insurance and Medicare, it has been an eye-opening experience for us to see how this system truly works. Some of you may have wondered why attending to Dave has been a full time job for our family, but I can assure you that without our participation, Dave could have very easily gotten lost in the system. In spite of some really outstanding medical staff who have worked on Dave, there has been no one but the family to advocate on his behalf. Not only have we provided the moral support Dave has needed as he fights his way back to health, our expected role, but our eyes have been the only ones paying close attention to his condition hour to hour, day by day. We have been the ones to point out changes that turned out to be medical situations requiring serious attention. Without a doubt, Jan should have been put on the payroll for the hours of nursing care she administers to Dave every day, things that the staff out there are too overworked to get to, but things that have been essential to Dave's continued health and progress.
We are not complaining... each of us has been changed forever by this experience, as you might guess. We are each on a journey, in a supporting role in Dave's own medical journey. We have each learned things about ourselves that we have not learned in other ways in our lives, and have expanded in our capacities and abilities because of these experiences. I see amazing personal growth and changes in my family. I will always be grateful for the experience of learning these things in my own life. When you go through something this tough because you love someone, the blessings that come into your life through the windows and cracks in the door are truly surprising and amazing.
One strange fact I've discovered is that it is harder for me to keep the site updated while I'm in Ohio. Partly, it's because my time is much more limited, but partly, it's because most of my attention to Dave is directed at administrative things, things that aren't helpful for all of you to know. Now that I'm back in Phoenix, and have some perspective on the situation, I can provide you with a substantial update about Dave's recent progress.
Before this started, our family knew nothing about stroke recovery. We are learning a lot as we work through this. One of the surprising things is that recovery is not steady and obvious. In fact, it can seem like one step forward, one step sideways, another step forward, and one step back. You can't judge progress by comparing today against yesterday. You have to look at the bigger picture.
Dave's recovery has always been complicated by medical issues. If he had not gotten bronchitis, for example, he would not have been slowed down by ventilator, then oxygen, then the trach. He would have had the strength to start a stroke rehab program right out of the Dayton Heart Hospital in September. He needed most of his strength to fight the bronchitis, leaving very little energy for physical and speech therapy. His ulcer was another medical complication that slowed his progress, one that we didn't learn about until recently. And there have been others. The effect of these complications, however, is that Dave has laid in a bed longer and longer, making his physical recovery harder with each week, and slowing his overall progress.
In the fall, Dr. Cain warned us that many of the patients in Dave's condition do not make it because they fall into a pattern of setbacks. He said that patients typically get a series of respiratory infections that continually weaken the patient until they don't have the strength to recover. As you can see from our record here, Dave has avoided that situation. He has not had a series of respiratory setbacks. He's had steady, albeit slow, recovery without any additional complications. Dr. Cain has been surprised to see how well Dave has done, and very pleased to see he has avoided that problem. We are grateful, because we knew that if that pattern started, the chances for a positive outcome were slim.
Dave's doctors determined a month ago that his trach could be removed. It has stayed through the last month out of caution -- with the flu season this year so bad, we didn't want to rush to remove the trach in case Dave would get sick. It would be much harder on him if we removed the trach, and then had to reinstall it later. Dr. Cain is evaluating Dave within the next week, and we fully expect the trach to be removed very soon. We'll let you know when that evaluation and procedure are scheduled.
Along with the trach, Dave's swallow evaluation needs to be completed. We've mentioned this several times here. We have known for some time that it needs to be done, but the priority for doing it seems to change all of the time. Dave's former speech therapist (more about that later) believes that Dave's swallow is fine, but there are things that watching someone swallow doesn't tell you, and this test will show. We don't expect any sort of bad news in this test result.
With the trach removed, and a good swallow evaluation, Dave will be ready to begin eating solid foods again. He's been living on a liquid something like Slim-Fast or Ensure that goes in a tube directly to his stomach. There's not much enjoyment in that type of food! There will be a transition time where Dave will begin drinking, and then eating soft liquids, and working his way back to steak and potatoes. The food tube will stay in place until the transition is complete, and Dave begins to get all of his nutrition through solid foods. While some people do have problems getting back on solid foods, we don't anticipate Dave will have any problems. We know he misses his favorite foods, and is eager to get back to them.
Also with the trach removed, there will be no obstacle to Dave's speech. We have been disappointed with the speech therapist who has been seeing Dave, and we are looking to start with a new one very soon. With all of his lung and breathing complications, Dave is having some trouble coordinating his breathing with talking. It's something we all learned to do when we started talking, and Dave must relearn this a bit. Sometimes when he speaks to us, you can understanding him clearly the first time, and even hear him across the room. Most of the time, his voice is quite whispery and it takes several attempts to figure out what he is saying. With the trach gone, and some good speech therapy to coordinate his breathing, we expect Dave to being talking clearly in the near future. We know from an earlier test that there was no damage to his vocal chords from his stroke. There is a chance that the trach may have done some throat damage, but that isn't very common. When this is done, Dave may have a softer voice than before, but we don't expect any limitations to his speaking.
Since Dave's ulcer was discovered, there has been quite of bit of change in Dave's physical therapy progress. Immediately after he returned from Grandview, Dave had a huge jump in his abilities that surprised his therapists. We believed that this change showed us how much his ulcer had been complicating his recovery. But just two weeks later, the same therapists were telling us the opposite, the Dave was doing poorly, so poorly that they were cutting back his therapy schedule because he wasn't getting enough benefit.
Our family was totally shocked by this series of events, and we started talking at length with Dr. Hunter, the DaySpring house physician. After several weeks of talking and trying some things, we discovered that Dave had started some new medications when he left Grandview, and there were some adjustments that needed to be made. Dr. Hunter discovered that Dave was getting one drug first thing in the morning, and the most common side effect of this drug was drowsiness! No wonder Dave wasn't doing well in his morning therapy right after taking this!
Dr. Hunter adjusted the timing and the dosage of some of Dave's medications, and the change in Dave in the last ten days has been dramatic. I can't tell you how frustrating it has been for the family to watch Dave seem to slow down his progress, only to learn that it was because his medical situation needed more management. We are grateful to Dr. Hunter that he dug into the situation and found the causes for the progress slowdown. In the last week, Dave has started moving in ways that we have never seen before. We are working with the physical therapy staff to have Dave evaluated for an intensive in-patient stroke rehab program, and expect to announce in the coming weeks when and where this will start.
After rehab, Dave is going home. We know that just being home will help Dave immensely. It won't be too long, now.
The only thing I will share about the administration of Dave's health and insurance is this -- our family sincerely hopes that none of you ever has someone you love go this far into the medical system. Even with Dave's good insurance and Medicare, it has been an eye-opening experience for us to see how this system truly works. Some of you may have wondered why attending to Dave has been a full time job for our family, but I can assure you that without our participation, Dave could have very easily gotten lost in the system. In spite of some really outstanding medical staff who have worked on Dave, there has been no one but the family to advocate on his behalf. Not only have we provided the moral support Dave has needed as he fights his way back to health, our expected role, but our eyes have been the only ones paying close attention to his condition hour to hour, day by day. We have been the ones to point out changes that turned out to be medical situations requiring serious attention. Without a doubt, Jan should have been put on the payroll for the hours of nursing care she administers to Dave every day, things that the staff out there are too overworked to get to, but things that have been essential to Dave's continued health and progress.
We are not complaining... each of us has been changed forever by this experience, as you might guess. We are each on a journey, in a supporting role in Dave's own medical journey. We have each learned things about ourselves that we have not learned in other ways in our lives, and have expanded in our capacities and abilities because of these experiences. I see amazing personal growth and changes in my family. I will always be grateful for the experience of learning these things in my own life. When you go through something this tough because you love someone, the blessings that come into your life through the windows and cracks in the door are truly surprising and amazing.
Friday, January 02, 2004
A Happy Day
On Christmas Eve, Dave's younger daughter, Michelle, got engaged to Ron Jordan, the guy she has been with for three years. Ron popped the question early in the evening, to everyone's surprise, and gave Michelle a beautiful ring. Ron and Michelle went out to DaySpring first to tell Dave before they told the rest of the Kingston family.
For a lot of reasons, they wanted to get married right away, and wanted for Dave to be at the wedding. Tonight, Michelle and Ron were married in the chapel at DaySpring by Mayor Beard of Enon. There were about 25 close friends and family present for the short ceremony, including Ron's son, Kyle, who recently joined the Army and will be sent to Iraq in the coming months. Ron's daughter, Tiffany, his mother, Violet Muncy, and his twin sister, Bonnie, were also present. The Kingston side included Dave and Jan, Michelle's sons, Kyle and Andy, Dave Jr. and his wife, Stacey, and their two daughters, Amberlee and Autumn, and me. Michelle's good friends from England, Claire and Malcolm Bradbury, are visiting with their daughter, Illaria,and Claire served as her matron of honor. Ron's son, Kyle, served as his best man. Several friends captured the event on video tape, and Dave Jr. took lots of pictures.
In talking with Dad about this, he thought that Michelle looked beautiful and he is quite happy to include Ron in the family (even though he has non-Kingston taste in his favorite sports team). It was a wonderful evening.
On Christmas Eve, Dave's younger daughter, Michelle, got engaged to Ron Jordan, the guy she has been with for three years. Ron popped the question early in the evening, to everyone's surprise, and gave Michelle a beautiful ring. Ron and Michelle went out to DaySpring first to tell Dave before they told the rest of the Kingston family.
For a lot of reasons, they wanted to get married right away, and wanted for Dave to be at the wedding. Tonight, Michelle and Ron were married in the chapel at DaySpring by Mayor Beard of Enon. There were about 25 close friends and family present for the short ceremony, including Ron's son, Kyle, who recently joined the Army and will be sent to Iraq in the coming months. Ron's daughter, Tiffany, his mother, Violet Muncy, and his twin sister, Bonnie, were also present. The Kingston side included Dave and Jan, Michelle's sons, Kyle and Andy, Dave Jr. and his wife, Stacey, and their two daughters, Amberlee and Autumn, and me. Michelle's good friends from England, Claire and Malcolm Bradbury, are visiting with their daughter, Illaria,and Claire served as her matron of honor. Ron's son, Kyle, served as his best man. Several friends captured the event on video tape, and Dave Jr. took lots of pictures.
In talking with Dad about this, he thought that Michelle looked beautiful and he is quite happy to include Ron in the family (even though he has non-Kingston taste in his favorite sports team). It was a wonderful evening.
