You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
Hello, this is Rose with a quick update. I want to share an exchange I heard between Sue and Chris. Most of you probably know Sue doesn't care much for dogs and that Chris and Shelly love dogs and have two of them. Sue, Den, and I were going somewhere the other day. Sue was in the backseat where she thought she found a dog hair. In mock anger, she said she thought she would just call Chris, and she did. This was their exchange:
Sue: Chris, this is your mama. I think I found a dog hair in the back seat of my car.
Chris: So, why are you calling me, Mama?
Sue: You're the only one who uses my car who has dogs.
Chris: Can't be my dogs' hair. They ride in the front seat.
This is exactly the kind of thing Sue would say!
-----------------
Things are quiet here these days. There is a routine in place for seeing that Den gets to his therapy appointments, usually three days per week for six hours each day, and to his various physician appointments. This morning Sue and Aaron have taken Den to see a nephrologist and a psychiatrist--all a part of the evaluation for a possible liver transplant. If the surgeon who will do the transplant is available, they will meet with him today also.
Kim has been sick with the flu so Aaron has filled in with driving for her. Chris and I pick up and help out where Kim and Aaron can't. Some of Den's siblings are pitching in with visits, goodies that Den likes, movies, and the like. Lori, Den's sister, will help with the transportation when she can.
Serious illness alone is enough to contend with. Tack on all the expense, the logistics, the worry, and the responsibility--the stress is something to behold. Den still gets confused, particularly about time, the days of the week, the appointments, etc., so everything about his care falls to Sue and his kids to manage. Of course, Sue is not well herself so this mess is awfully hard on her. Shirley, Chris, and I try to help as we can, but the lion's share of the problems and responsiblities fall squarely on Sue.
One happy note in the midst of everything is that Sue is walking better than she has in a year. She seldom uses a wheelchair and can pretty much go in and out of the extended care facility unaided unless she has a lot of stuff to carry. For this happy note, we are extremely grateful!
Please keep Sue and Den in your prayers.
Thursday, February 24, 2005
Thursday, February 17, 2005
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
The last time we updated this blog with something other than photos was February 5. Scott and sons came from Louisville late on the 4th. On the 5th Scott and I took Den for an outing. Rose, Shirley, and I kept Jalen and Brayden on Saturday night so that Scott could go to the Big Fight (Judah and Spinks), then Scott and Jalen had to return to Louisville on Sunday, leaving Brayden with us. Brayden's second birthday was on the 12th. We celebrated with Scott and Jalen on Sunday morning. Some of the photos we posted here are of Brayden opening his gifts. We kept him until Scott and Sherry picked him up on Thursday evening. We certainly enjoyed having the two boys even though Jalen's visit was brief because he had to go to school.
Brayden is maturing beautifully. We love taking him out because people make over him constantly. One man at the facility where Den is in residence told us there was an old Yiddish expression for a boy like Brayden, "sweet and pretty face." Brayden is very shy around strangers and that seems to endear him even more. We took him with us when Den went to the Rehabilitation Institute. He was a model child until he thought he should push Papa's wheelchair. Then he and I had an altercation that I thought he might actually win because he is one strong little boy. Fortunately, Rose arrived in time to save Den from being recklessly wheeled about by a two-year-old. Brayden loves 'Papa' and likes to say "Hi, Papa," the way he likes to say "Hi Pete." We think he likes the way the words sound for he say them over and over--even though he hasn't seen Pete in several months.
Brayden is extremely attached to his Daddy, and when Scott arrived on Thursday his joy was not to be contained. As Scott and Sherry packed the car, Brayden's excitement grew. He knew he was going home with Daddy. Just in case, he absolutely did not let Daddy out of his sight until the three of them were in the car, waving goodbye.
Den went to the Rehabilitation Institute for testing on Wednesday and for an MRI on Monday. These two visits were for an initial evaluation that is part of an NIH (National Institute of Health) study for how stroke patients' recoveries affect their brains. He will have follow-up tests in six months.
Also, now Den is going to the Rehabilitation Institute two to three times each week for intensive physical and occupational therapy. After his second visit today, he said he felt better than he had felt in 30 days. His day consists of six hours of very exhaustive therapies, so he comes away very tired. The Institute is located just east of Barnes-Jewish Hospital and is an easy commute from the extended care facility in Clayton. So far, we've worked out a schedule with Den's son and daughter, with Chris, and with Rose that makes the ferrying not difficult for any one person. I have been going along as moral support and as the one who coordinates with all the physicians, therapists, and family to keep this considerable effort going.
Vivian, a friend of Rose's and mine and a regular reader of this blog, told Rose she wasn't really clear from the reading just what Den's problems were. So, let's recapitulate. Den suffered a CVA (cardio-vascular accident), or stroke, on November 4 or 5 while in New Hampshire on business. He was first very ill from what he thought was the flu. Turns out he had bleeding vessels in his stomach due to his undiagnosed end-stage liver disease. It was the bleeding that first made it imperative that he get himself to an emergency room.
It was after this initial hospitalization on November 4 that he had the stroke. While in the hospital in New Hampshire, Den had a "TIPS" procedure which is a shunt that allows blood to bypass a portion of the liver that is not functioning. About the same time the physicians at Dartmouth Hitchcock Medical Center in New Hampshire told us Den had a suspicious spot on his liver.
After Den was transferred to St. Mary's Rehabilitation Center in St. Louis, he has been seeing an gastroenterologist at St. Louis University Hospital. This man, Dr. Bruce Bacon, is evaluating Den for a possible liver transplant. Dr. Bacon has found a small malignancy on Den's liver and is watching it to determine how fast it is growing. Of course, all this means a ton of extensive testing and evaluation to see if Den can indeed benefit from a liver transplant. We don't know yet what the outcome of the testing and evaluation will be. Den and I remain frightened and also very hopeful.
Shirley made her normal trip to Chicago last Wednesday, and Rose made hers on Saturday. I spent the weekend with the Abbotts once again and enjoyed it a lot. What with the Lenten Season, Chris picked up fish dinners from his old parish last Friday, and he, Rose, and I had a feast. Poor Shelly had to work.
Shirley returned on Monday, Rose on Tuesday. Life is pretty much back to normal here--whatever that is.
The last time we updated this blog with something other than photos was February 5. Scott and sons came from Louisville late on the 4th. On the 5th Scott and I took Den for an outing. Rose, Shirley, and I kept Jalen and Brayden on Saturday night so that Scott could go to the Big Fight (Judah and Spinks), then Scott and Jalen had to return to Louisville on Sunday, leaving Brayden with us. Brayden's second birthday was on the 12th. We celebrated with Scott and Jalen on Sunday morning. Some of the photos we posted here are of Brayden opening his gifts. We kept him until Scott and Sherry picked him up on Thursday evening. We certainly enjoyed having the two boys even though Jalen's visit was brief because he had to go to school.
Brayden is maturing beautifully. We love taking him out because people make over him constantly. One man at the facility where Den is in residence told us there was an old Yiddish expression for a boy like Brayden, "sweet and pretty face." Brayden is very shy around strangers and that seems to endear him even more. We took him with us when Den went to the Rehabilitation Institute. He was a model child until he thought he should push Papa's wheelchair. Then he and I had an altercation that I thought he might actually win because he is one strong little boy. Fortunately, Rose arrived in time to save Den from being recklessly wheeled about by a two-year-old. Brayden loves 'Papa' and likes to say "Hi, Papa," the way he likes to say "Hi Pete." We think he likes the way the words sound for he say them over and over--even though he hasn't seen Pete in several months.
Brayden is extremely attached to his Daddy, and when Scott arrived on Thursday his joy was not to be contained. As Scott and Sherry packed the car, Brayden's excitement grew. He knew he was going home with Daddy. Just in case, he absolutely did not let Daddy out of his sight until the three of them were in the car, waving goodbye.
Den went to the Rehabilitation Institute for testing on Wednesday and for an MRI on Monday. These two visits were for an initial evaluation that is part of an NIH (National Institute of Health) study for how stroke patients' recoveries affect their brains. He will have follow-up tests in six months.
Also, now Den is going to the Rehabilitation Institute two to three times each week for intensive physical and occupational therapy. After his second visit today, he said he felt better than he had felt in 30 days. His day consists of six hours of very exhaustive therapies, so he comes away very tired. The Institute is located just east of Barnes-Jewish Hospital and is an easy commute from the extended care facility in Clayton. So far, we've worked out a schedule with Den's son and daughter, with Chris, and with Rose that makes the ferrying not difficult for any one person. I have been going along as moral support and as the one who coordinates with all the physicians, therapists, and family to keep this considerable effort going.
Vivian, a friend of Rose's and mine and a regular reader of this blog, told Rose she wasn't really clear from the reading just what Den's problems were. So, let's recapitulate. Den suffered a CVA (cardio-vascular accident), or stroke, on November 4 or 5 while in New Hampshire on business. He was first very ill from what he thought was the flu. Turns out he had bleeding vessels in his stomach due to his undiagnosed end-stage liver disease. It was the bleeding that first made it imperative that he get himself to an emergency room.
It was after this initial hospitalization on November 4 that he had the stroke. While in the hospital in New Hampshire, Den had a "TIPS" procedure which is a shunt that allows blood to bypass a portion of the liver that is not functioning. About the same time the physicians at Dartmouth Hitchcock Medical Center in New Hampshire told us Den had a suspicious spot on his liver.
After Den was transferred to St. Mary's Rehabilitation Center in St. Louis, he has been seeing an gastroenterologist at St. Louis University Hospital. This man, Dr. Bruce Bacon, is evaluating Den for a possible liver transplant. Dr. Bacon has found a small malignancy on Den's liver and is watching it to determine how fast it is growing. Of course, all this means a ton of extensive testing and evaluation to see if Den can indeed benefit from a liver transplant. We don't know yet what the outcome of the testing and evaluation will be. Den and I remain frightened and also very hopeful.
Shirley made her normal trip to Chicago last Wednesday, and Rose made hers on Saturday. I spent the weekend with the Abbotts once again and enjoyed it a lot. What with the Lenten Season, Chris picked up fish dinners from his old parish last Friday, and he, Rose, and I had a feast. Poor Shelly had to work.
Shirley returned on Monday, Rose on Tuesday. Life is pretty much back to normal here--whatever that is.
Sunday, February 06, 2005
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