Yesterday and today Jay has been a real snooze machine. He has FINALLY turned the corner, and this intestinal scourge looks like it will soon be in the rear view mirror. He has been able to eat, do therapy, and sleep, and his spirits are improving again. I can't tell you how much relief I feel, both for Jay and I, because all this misery was killin' us!
What an arduous road this has been. Saturday is a lighter day for therapy and since Sunday is a day of rest in rehab, Jay gets a break before we start back to work on Monday. Not much to report but blessed relief.
Thanks for all the prayers and keep them coming. The next phase of recovery will focus on the whole person, not just Jay's physical reality. I cannot even imagine what's going on in his heart, mind, and soul. I have just let him be...........................
Saturday, January 31, 2009
Friday, January 30, 2009
It is True that Life is NOT Fair!
Hopefully, TODAY things will turn around for Jay. The doctors are calling this stomach bacteria just a bump in the road, but it has been a major setback. More gory details I won't expose you to, but last night Jay was so sick he threw up his feeding tube! The tube was replaced today - another awful procedure he's had to endure. He still has the tube because he's too nauseated to eat and he obviously needs nutrition. The tube can come out when he is able to eat enough to maintain a good nutritional state.
The good news is that they've changed the nausea medicine (to Phenergan - which is what I told them I wanted them to give him in the first place), and he's now sleeping peacefully. He really does feel better and the docs say "today is the day this will turn around." Although I've been hearing that all week, I have to believe that today will be the day because it HAS to be!
A request to all of you who pray: please petition the Lord with prayer for Jay to get over this bug. He's paid his dues, it's time to get on with rehab and recovery.
The really GREAT news: during this whole miserable week, his stroke deficits are continuing to improve and Dr. Edgely feels Jay has the potential for a full recovery. Jay seems much more sober and depressed, which the docs say is to be expected, not just because of the illness setback, but because he is beginning to process this catastrophic experience.
Dr. Gael Yonnet is Jay's other doctor. He is an amazing young Frenchman who came to medical school in Salt Lake City and had a snowboarding accident which left him a paraplegic. (Google him to learn of his story). He has been very helpful to me in processing and navigating these uncharted waters. Dr. Yonnet reminds me that a spinal chord injury patient has to accept that they will never walk again, while Jay will regain his stroke deficits. Life is not fair for Dr. Yonnet either.......................
The good news is that they've changed the nausea medicine (to Phenergan - which is what I told them I wanted them to give him in the first place), and he's now sleeping peacefully. He really does feel better and the docs say "today is the day this will turn around." Although I've been hearing that all week, I have to believe that today will be the day because it HAS to be!
A request to all of you who pray: please petition the Lord with prayer for Jay to get over this bug. He's paid his dues, it's time to get on with rehab and recovery.
The really GREAT news: during this whole miserable week, his stroke deficits are continuing to improve and Dr. Edgely feels Jay has the potential for a full recovery. Jay seems much more sober and depressed, which the docs say is to be expected, not just because of the illness setback, but because he is beginning to process this catastrophic experience.
Dr. Gael Yonnet is Jay's other doctor. He is an amazing young Frenchman who came to medical school in Salt Lake City and had a snowboarding accident which left him a paraplegic. (Google him to learn of his story). He has been very helpful to me in processing and navigating these uncharted waters. Dr. Yonnet reminds me that a spinal chord injury patient has to accept that they will never walk again, while Jay will regain his stroke deficits. Life is not fair for Dr. Yonnet either.......................
Thursday, January 29, 2009
Holding My Breath
I know so many of you care about Jay and follow the blog to see how he's doing. Of course, I want to report and write about great progress and good news. I didn't report last night because he's better, but still suffering from an intestinal bacteria (c-diff). I was so frustrated and miserable, I could not bear to write. You can only imagine how he felt! The medication should be kicking in and taking more effect today, and I hope to the heavens he can get off the bedpan and back to the gym. He was completely wiped out from this bacteria yesterday.
I'm holding my breath until I get to the hospital this morning............................this "bug" has got to end.
I'm holding my breath until I get to the hospital this morning............................this "bug" has got to end.
Tuesday, January 27, 2009
A Bump in the Road
What a rocky roller coaster ride we're on. This bump in the road is not that big a deal in the greater scheme of things, but it sure made for a miserable and disappointing day. Jay now has an intestinal bacteria that has given him some serious tummy trouble. It wiped him out and made him feel so sick, he couldn't do therapies today. He's now taking meds for pain and nausea, and Flagyl, the treament for the culprit bug. It's such a bummer because not only did he feel awful, we had to skip therapy. An intestinal bacteria....geez, what next?
We were all ready for a really pumped up day. Jay's PT brought some awesome stickers and decals for Jay's helmet. With "Squeezie Boy" on the front, (my nickname for Jay) and "Pres Jay" on the back, it's a very cool deal. Everyone was disppointed that Jay felt too sick to work today. We were all looking forward to the fun and elation of more amazing progress.
Here's hoping that the meds kick in, Jay is able to sleep tonight, tomorrow is a better day, and we can get back on track. Gosh darn't, everything was going so well.................
Dawn
We were all ready for a really pumped up day. Jay's PT brought some awesome stickers and decals for Jay's helmet. With "Squeezie Boy" on the front, (my nickname for Jay) and "Pres Jay" on the back, it's a very cool deal. Everyone was disppointed that Jay felt too sick to work today. We were all looking forward to the fun and elation of more amazing progress.
Here's hoping that the meds kick in, Jay is able to sleep tonight, tomorrow is a better day, and we can get back on track. Gosh darn't, everything was going so well.................
Dawn
Monday, January 26, 2009
Unbelievable!
The progress Jay has made in therapy is phenomenal. On Friday morning he had not yet gotten out of bed. In three days (with no therapy on Sunday) he has graduated from standing, to walking between parallel bars, to walking with a walker, to walking without a walker (with assistance of the physical therapists). He rode a recumbant (sp?) bike for 35 minutes today. He is also regaining the use of his left hand and arm. I was elated last night when he squeezed my hand with his left hand, and squeezed it hard. Everyone is amazed. They believed Jay to have the potential for a full recovery, but they did not dream it would happen this fast.
We have a long way to go, as these are gross movements, but this is only the beginning, and it means his brain is healing and his recovery potential is huge. As the swelling in his brain continues to goes down, we will see more progress. It is fascinating to witness a brain injured person relearn fine and gross motor skills and the activities of daily living.
The staff loves Jay because he works so hard, has so much drive, is so appreciative and interested in those who work with him, and has a great sense of humor. There are many angels of mercy of both genders in this hospital/rehab. "The U" as the University of Utah is referred to, has schools of medicine, nursing, occupational and physical therapy, and all the allied health sciences, and many of these college students take care of and work with Jay. We have a dream team and are very blessed.
Dawn
We have a long way to go, as these are gross movements, but this is only the beginning, and it means his brain is healing and his recovery potential is huge. As the swelling in his brain continues to goes down, we will see more progress. It is fascinating to witness a brain injured person relearn fine and gross motor skills and the activities of daily living.
The staff loves Jay because he works so hard, has so much drive, is so appreciative and interested in those who work with him, and has a great sense of humor. There are many angels of mercy of both genders in this hospital/rehab. "The U" as the University of Utah is referred to, has schools of medicine, nursing, occupational and physical therapy, and all the allied health sciences, and many of these college students take care of and work with Jay. We have a dream team and are very blessed.
Dawn
Sunday, January 25, 2009
A Day of Rest
No therapies on Sunday in rehab. It's much quieter than I thought it would be, a real day of rest. The snow falling outside makes everything even more quiet and still. Dev is flying out of Salt Lake and back to Denver in a couple of hours and I hope she doesn't get weather delayed, as she really needs to get back to school.
We've been told that a brain injured person needs to sleep to heal, and Jay is certainly following that prescription. It's such a relief that he can sleep peacefully now that all the surgical tubes and catheters are gone. The doctors have told us that at this stage of the healing, his emotions will be strong; funny things will seem funnier and sad things will be more sad. Jay has been very touched as he learns of the outpouring of love and support, and he has never been funnier. He is just a riot and keeps us in stitches.
He seems to have a childlike peace about this. We haven't done a lot of processing about his stroke and all the implications. At this point I tell him not to worry, that his job is to rest so he can continue to get better. It is amazing to think that on Sunday two weeks ago, our world had not been rocked. In two weeks we have gone from unfathomable, to horrific, to on the mend. I can't wait to see what the next two weeks will bring........
Dawn
We've been told that a brain injured person needs to sleep to heal, and Jay is certainly following that prescription. It's such a relief that he can sleep peacefully now that all the surgical tubes and catheters are gone. The doctors have told us that at this stage of the healing, his emotions will be strong; funny things will seem funnier and sad things will be more sad. Jay has been very touched as he learns of the outpouring of love and support, and he has never been funnier. He is just a riot and keeps us in stitches.
He seems to have a childlike peace about this. We haven't done a lot of processing about his stroke and all the implications. At this point I tell him not to worry, that his job is to rest so he can continue to get better. It is amazing to think that on Sunday two weeks ago, our world had not been rocked. In two weeks we have gone from unfathomable, to horrific, to on the mend. I can't wait to see what the next two weeks will bring........
Dawn
Saturday, January 24, 2009
Quote from Dr. Garren
In hearing about coming from a new wing of the hospital to this rehab setting, our travel buddy Laurie Garren commented: "kind of like going from our all inclusive resort the Paradisus, to the Cancun airport!" The journey continues................
Technical Difficulties
For some reason I have had technical difficulties in "publishing" the blog since the last entry. Perhaps an internet connection was the problem, but both times the blog entry simply disappeared when I saved and "published". For fear that might happen again, I'm going to make this short. But today's a new day and there's always hope.......
Amazing progress in 24 hours....with the assistance of 2 very small physical therapists, Jay worked on standing and walking in PT! Jay never seemed that tall to me, but his height
makes standing and walking with a "sleepy" left side even more of a challenge. He seems huge in this context.
Jay has obviously paid some serious dues for the progress he's made, and the small tight quarters of this rehab unit are a high price to pay. Sharing rooms, complete lack of privacy, constant noise, people everywhere all the time, makes it impossible to rest and is a crazymaker for me. These doctors and therapists are totally worth the tough living accomodations, but home sweet home has never looked so good. I feel bad when I go back to my cozy guest house and Jay has to stay.
I want to thank so many of you. So many people are working so hard to help us out and pick up the slack that our trip to Salt Lake City has caused. I'm so grateful and apologetic to our coworkers, thankful to our pals Jeff and Laurie Garren who now have two households to mind,
thanks to friends and family who have sent cards, emails, packages, and phone messages, and thanks to the Western State cheerleaders who made a banner and special cheer for President Helman at the basketball game. We feel all your love and we can't wait to get home to start working for you again.
Amazing progress in 24 hours....with the assistance of 2 very small physical therapists, Jay worked on standing and walking in PT! Jay never seemed that tall to me, but his height
makes standing and walking with a "sleepy" left side even more of a challenge. He seems huge in this context.
Jay has obviously paid some serious dues for the progress he's made, and the small tight quarters of this rehab unit are a high price to pay. Sharing rooms, complete lack of privacy, constant noise, people everywhere all the time, makes it impossible to rest and is a crazymaker for me. These doctors and therapists are totally worth the tough living accomodations, but home sweet home has never looked so good. I feel bad when I go back to my cozy guest house and Jay has to stay.
I want to thank so many of you. So many people are working so hard to help us out and pick up the slack that our trip to Salt Lake City has caused. I'm so grateful and apologetic to our coworkers, thankful to our pals Jeff and Laurie Garren who now have two households to mind,
thanks to friends and family who have sent cards, emails, packages, and phone messages, and thanks to the Western State cheerleaders who made a banner and special cheer for President Helman at the basketball game. We feel all your love and we can't wait to get home to start working for you again.
Thursday, January 22, 2009
Jay's Excellent Adventure
We completed Jay's move to rehab, the next stage of the healing of his wounded brain. It feels like we have found a home. The other patients have also experienced brain or spinal chord injuries. It is inspiring to see where they are on their journey through recovery, and to be reassured that we too will get there. The capacity for recovery of the brain is remarkable. The healing of the brain brings the return of physical, cognitive, emotional, and speech skills, and each person has a different journey depending on the part of their brain that was injured.
Jay's team of doctors are AWESOME! One very cool young doctor is a Frenchman, and it amazed everyone when he and Jay spoke French together. This doctor has had his own struggle, as he is in a chair. Dr. Edgely was so welcoming and told Jay it is an honor and a pleasure to have him here. I know Jay is moved by the amazing people around him, both those who have overcome similar challenges, and staff who are passionate about helping people navigate through this transformative experience.
I can assure you that we are not at the Ritz. University Hospital is under major construction and within the year the rehab institute will be in a brand new beautiful facility with private rooms for all patients. For now we're in an old, crowded, archaic looking unit. It depressed me at first, but quickly you realize it's all about the people: staff who love to work there, and patients who are working hard to get their lives back. Family members are welcome as part of the team and I know that both Jay and I will be touched by the lives of others. Dev will love the BIG screen tv in the rec room. There is a lot going on in a small space and I fear the noise, activity, and lack of privacy will be hard on Jay, for he's a guy who loves to relax at home. But it is what it is and none of this has been easy.
I am staying at a very cool place. The University Guest House is a dorm like hotel on the University of Utah campus. Many other patients at the University Hospital and their family members use the Guest House as a home away from home. We have a common bond, and a sense of compassion and community. Families of U of U students, foreign students, conferencing professionals, academics, diverse college students, skiers, and this weekend, Sundance Film Festival folks, make this a comfortable and pleasant place to be. I was a bit jealous of Dev's college life, but I certainly didn't want to return to dorm living myself. You just never know........
Thanks SO much for the cards you've sent to Jay. He's just now starting to read them. He got the biggest kick out of a really funny Far Side card and has continued to make jokes about it. For some reason, his sense of humor is more keen than I ever remember it. If you see a really funny card, send it his way.
Dev is flying in from Denver tonight. She is going to be so thrilled when she sees her daddy. Tomorrow's Friday all you working folk. TGIF. Dawn
Jay's team of doctors are AWESOME! One very cool young doctor is a Frenchman, and it amazed everyone when he and Jay spoke French together. This doctor has had his own struggle, as he is in a chair. Dr. Edgely was so welcoming and told Jay it is an honor and a pleasure to have him here. I know Jay is moved by the amazing people around him, both those who have overcome similar challenges, and staff who are passionate about helping people navigate through this transformative experience.
I can assure you that we are not at the Ritz. University Hospital is under major construction and within the year the rehab institute will be in a brand new beautiful facility with private rooms for all patients. For now we're in an old, crowded, archaic looking unit. It depressed me at first, but quickly you realize it's all about the people: staff who love to work there, and patients who are working hard to get their lives back. Family members are welcome as part of the team and I know that both Jay and I will be touched by the lives of others. Dev will love the BIG screen tv in the rec room. There is a lot going on in a small space and I fear the noise, activity, and lack of privacy will be hard on Jay, for he's a guy who loves to relax at home. But it is what it is and none of this has been easy.
I am staying at a very cool place. The University Guest House is a dorm like hotel on the University of Utah campus. Many other patients at the University Hospital and their family members use the Guest House as a home away from home. We have a common bond, and a sense of compassion and community. Families of U of U students, foreign students, conferencing professionals, academics, diverse college students, skiers, and this weekend, Sundance Film Festival folks, make this a comfortable and pleasant place to be. I was a bit jealous of Dev's college life, but I certainly didn't want to return to dorm living myself. You just never know........
Thanks SO much for the cards you've sent to Jay. He's just now starting to read them. He got the biggest kick out of a really funny Far Side card and has continued to make jokes about it. For some reason, his sense of humor is more keen than I ever remember it. If you see a really funny card, send it his way.
Dev is flying in from Denver tonight. She is going to be so thrilled when she sees her daddy. Tomorrow's Friday all you working folk. TGIF. Dawn
Great News!
Only one week after his second surgery, Jay is moving to rehab! The decision about rehab here in Salt Lake City vs Denver has been the subject of much conversation during the past few days, and the answer has now become clear. I realized that my desire to go to Denver was about Dev and I, not about Jay.
Not only is staying here the path of least resistance, it is also the fast track. University Hospital in Salt Lake City is a renowed research hospital specializing in strokes. They believe in aggressive treatment, from advanced surgical techniques immediately following the incident, to early and aggressive rehab therapies.
Feel free to google Dr. Steven Edgley, the director of the University of Utah Rehab Institute. He is a physician who has had a stroke and has recovered to go back to work as a Rehab MD. After his stroke he changed his field of medicine from opthamology to rehab. Dr. Edgley is a tall, brilliant, compassionate man who has taken an interest in Jay. The doctors and therapists really like Jay and want us to stay here, and Dr. Edgley feels that going to Denver would waste valuable time. The folks here are also very respectful of my wishes to return to Denver and are not pushing me.
I feel well taken care of by a hot shot team, so why would we leave? So on with the show! We are moving to rehab! Jay had his barium swallow study today and he did great. He gets to have snacks now which he is thrilled about (applesauce, pudding, fruit nectars). Thinner liquids have a quicker transit time, so they start with thick. He's sitting up in bed doing all kinds of exercises. The rehab team is going to get him standing when we get down there.
More good news later. I have to help pack up for our trip to the salt mines. They say rehab is hard work.
Not only is staying here the path of least resistance, it is also the fast track. University Hospital in Salt Lake City is a renowed research hospital specializing in strokes. They believe in aggressive treatment, from advanced surgical techniques immediately following the incident, to early and aggressive rehab therapies.
Feel free to google Dr. Steven Edgley, the director of the University of Utah Rehab Institute. He is a physician who has had a stroke and has recovered to go back to work as a Rehab MD. After his stroke he changed his field of medicine from opthamology to rehab. Dr. Edgley is a tall, brilliant, compassionate man who has taken an interest in Jay. The doctors and therapists really like Jay and want us to stay here, and Dr. Edgley feels that going to Denver would waste valuable time. The folks here are also very respectful of my wishes to return to Denver and are not pushing me.
I feel well taken care of by a hot shot team, so why would we leave? So on with the show! We are moving to rehab! Jay had his barium swallow study today and he did great. He gets to have snacks now which he is thrilled about (applesauce, pudding, fruit nectars). Thinner liquids have a quicker transit time, so they start with thick. He's sitting up in bed doing all kinds of exercises. The rehab team is going to get him standing when we get down there.
More good news later. I have to help pack up for our trip to the salt mines. They say rehab is hard work.
Tuesday, January 20, 2009
A Great Day 1-20-09
It's been a great day for our country and a great day for Jay as HOPE and CHANGE pervade.
How much change can happen in even 24 hours! Last night I slept in Jay's room on the neuro floor because I wasn't comfortable leaving him "alone" after the security of intensive care. A rocky start with nurses not getting his NG tube positioned correctly made me crazy, but the night turned out to be peaceful for both Jay and I. Tonight I feel confident that Jay is in good hands and I'm back at my hotel for a good night's sleep.
Jay is doing so much better, enabling him to focus on recovery and rest. He has endeared himself to the staff with his sense of humor, his appreciation of his nurses, and his strong motivation. We all enjoy experiencing Jay's sharp intellect and sense of humor. Today the speech therapists were accessing cognition and asked Jay "why do young people go to school?" I'm thinking "that's easy, to learn of course." Jay says "for growth and development." Then they ask why windows have glass in them. I'm thinking, "another easy one, to see through, of course." Jay answers "for translucence."
The speech therapists asked Jay to repeat this sentence exactly as spoken. "I got up, got dressed, walked down the hall and ate my breakfast" Jay says: "I wish!" We all laughed and he repeated the sentence perfectly. It seems that everything he says is funny and is just cracking us up. Anger and depression can be a reponse to a stroke, but Jay seems to be positive and motivated. The doctors have great hope for Jay's recovery. The healing of a brain injury is miraculous and amazing as you witness the changes the recovery process brings.
Alleluia. Alleluia. Jay got to have ice chips today! He was in Heaven, Double Heaven, he said. Water and Sprite hopefully come soon. His enjoyment of these simple pleasures is enjoyable to all of us. He has quite a cheering section here as he does in all of you. Keep praying.
This is not easy and having faith makes it so much easier.
Happy Inauguration Day! It was a day of rebirth for our nation and Jay's best day yet.
Dawn
How much change can happen in even 24 hours! Last night I slept in Jay's room on the neuro floor because I wasn't comfortable leaving him "alone" after the security of intensive care. A rocky start with nurses not getting his NG tube positioned correctly made me crazy, but the night turned out to be peaceful for both Jay and I. Tonight I feel confident that Jay is in good hands and I'm back at my hotel for a good night's sleep.
Jay is doing so much better, enabling him to focus on recovery and rest. He has endeared himself to the staff with his sense of humor, his appreciation of his nurses, and his strong motivation. We all enjoy experiencing Jay's sharp intellect and sense of humor. Today the speech therapists were accessing cognition and asked Jay "why do young people go to school?" I'm thinking "that's easy, to learn of course." Jay says "for growth and development." Then they ask why windows have glass in them. I'm thinking, "another easy one, to see through, of course." Jay answers "for translucence."
The speech therapists asked Jay to repeat this sentence exactly as spoken. "I got up, got dressed, walked down the hall and ate my breakfast" Jay says: "I wish!" We all laughed and he repeated the sentence perfectly. It seems that everything he says is funny and is just cracking us up. Anger and depression can be a reponse to a stroke, but Jay seems to be positive and motivated. The doctors have great hope for Jay's recovery. The healing of a brain injury is miraculous and amazing as you witness the changes the recovery process brings.
Alleluia. Alleluia. Jay got to have ice chips today! He was in Heaven, Double Heaven, he said. Water and Sprite hopefully come soon. His enjoyment of these simple pleasures is enjoyable to all of us. He has quite a cheering section here as he does in all of you. Keep praying.
This is not easy and having faith makes it so much easier.
Happy Inauguration Day! It was a day of rebirth for our nation and Jay's best day yet.
Dawn
Monday, January 19, 2009
Incredible Martin Luther King Day!!!
I have a dream and the mountaintop is high. But the progress today has been amazing. It all looks so hard and the "minor" medical issues are really frustrating. Jay's NG (nasogastric tube) needed to be changed, and the nurse who did it (bless her heart) didn't get it in right and it had to be done again. SO miserable. I have to leave the room when they are torturing Jay. This is no time for professional development. His PIC line needed to replaced after only two days (who forgot to use heparin??) Ouch again.
But the care he is getting IS extraordinary Bruce Bartleson! Most of these nurses and respiratory and physical therapists are rock stars. Today we cheered and high fived when Jay lifted his left leg and wiggled the toes of his left foot!!! It's coming back!!!! The doctors say the lower extremities come back first, before the arm and hand. We already knew that the speech, cognitive, and right side of Jay's body was not impacted by this stroke, but 2 brain surgeries leaves a guy looking really rough, and we've been waiting for his left side to show us what he's got. Today he sat up at the side of the bed and did great PT. One young PT stated "wow Jay that's good", and the other stated "that's ridiculously good". Of course I told her that everything Jay does is ridiculously good.
Tomorrow we do the swallow study and hopefully get this NG tube out. It's making Jay's life so miserable. He's dying for water, Sprite, a smoothie. When watching the football game yesterday with the Miller Lite commercials, I said "doesn't a beer sound good?" And he shakes his finger at me. "I want water and a smoothie." ( I have to admit a beer sounds good to me).
Jay is being so strong, clear, humble, and co-operative. He told one of the nurses yesterday that he hoped he wasn't being a pain in the ass. The staff here really care about me and Jay. Each step of the way, I hate to leave the people who are taking care of us because I've grown attached and secure. We're doing a lot of talking laughing, and getting to know each other.
We only got to Neuro ICU yesterday and we're moving to a floor this afternoon. I'm SO glad we're moving on, but I hate to leave the "intensive care" we're getting. On the floor the nurses have more patients and because Jay is doing so well and is stable, he doesn't need the intensive care of the ICU. They are even taking him off his monitors, which makes me very nervous. It seems like there have been so many risks every step of the way, and now I'm worried about the risk of moving off ICU!! Jay always says "squeezie, you can't take yes for an answer".
Your prayers are working. Please keep them coming. I've not yet read any of your messages to Jay, because right now he's focusing on the work of recovery, being tortured, and sleeping.
Got to go. We're moving!!!!
Dawn
But the care he is getting IS extraordinary Bruce Bartleson! Most of these nurses and respiratory and physical therapists are rock stars. Today we cheered and high fived when Jay lifted his left leg and wiggled the toes of his left foot!!! It's coming back!!!! The doctors say the lower extremities come back first, before the arm and hand. We already knew that the speech, cognitive, and right side of Jay's body was not impacted by this stroke, but 2 brain surgeries leaves a guy looking really rough, and we've been waiting for his left side to show us what he's got. Today he sat up at the side of the bed and did great PT. One young PT stated "wow Jay that's good", and the other stated "that's ridiculously good". Of course I told her that everything Jay does is ridiculously good.
Tomorrow we do the swallow study and hopefully get this NG tube out. It's making Jay's life so miserable. He's dying for water, Sprite, a smoothie. When watching the football game yesterday with the Miller Lite commercials, I said "doesn't a beer sound good?" And he shakes his finger at me. "I want water and a smoothie." ( I have to admit a beer sounds good to me).
Jay is being so strong, clear, humble, and co-operative. He told one of the nurses yesterday that he hoped he wasn't being a pain in the ass. The staff here really care about me and Jay. Each step of the way, I hate to leave the people who are taking care of us because I've grown attached and secure. We're doing a lot of talking laughing, and getting to know each other.
We only got to Neuro ICU yesterday and we're moving to a floor this afternoon. I'm SO glad we're moving on, but I hate to leave the "intensive care" we're getting. On the floor the nurses have more patients and because Jay is doing so well and is stable, he doesn't need the intensive care of the ICU. They are even taking him off his monitors, which makes me very nervous. It seems like there have been so many risks every step of the way, and now I'm worried about the risk of moving off ICU!! Jay always says "squeezie, you can't take yes for an answer".
Your prayers are working. Please keep them coming. I've not yet read any of your messages to Jay, because right now he's focusing on the work of recovery, being tortured, and sleeping.
Got to go. We're moving!!!!
Dawn
Sunday, January 18, 2009
Address Below
Some friends have asked for the address in order to send cards to Jay. We've already moved from surgical ICU to Neuro ICU, and the next step will be to a regular floor. The staff has assured me that his cards will find him.
Ooops!
Dev is so much better at this than I am. I sent the last entry by accident before completion.
University of Utah
University Hospital
NCC - Neuro Critial Care Unit
50 North Medical Drive
Salt Lake City, Utah 84132
University of Utah
University Hospital
NCC - Neuro Critial Care Unit
50 North Medical Drive
Salt Lake City, Utah 84132
Amazing Progress!!
Later on Sunday January 18th: It is such a relief to begin physical therapy. Jay is very stable and his pneumonia is clearing up. The staff has been vigilant and aggressive in their care and their efforts have been very beneficial to us. Jay is resting comfortably after a busy day of therapies. It really is amazing how much progress we've had in the last two days. I was told that it would start to happen, but Jay's medical fragility had been our focus. Now that he is so much better, it's exciting to start working on recovery. Steps are small and the road is long, but we're on our way.
Dawn
Dawn
Sunday Morning!! What a difference a night makes!! Jay had a good night. Slept peacefully. Pneumonia is better. All vital signs and monitor readings exactly where we want them to be. Better living through chemistry! Jay is being weaned off many of these medications as his own system takes over these vital chemical balances and functions.
He's aware, oriented, speaking, and more restful. The doctors say he needs rest to get this brain injury healed. He's still keeps asking for a shower, to get out of bed, for water, Sprite and grapes. Unfortunately none of those small pleasures are in the cards for today. No liquids until the pneumonia is cleared up and they do swallow studies to make sure we're ready for liquids and then food.
The great news is that he's making progress. The doctors are really pleased and say we'll see more progress everyday. Today I finally feel more relaxed and greatly relieved, but because patience is a virtue I have very little of, my mind rushes off into the future. When can we get back to our lives? Soon I hope.
Dawn
He's aware, oriented, speaking, and more restful. The doctors say he needs rest to get this brain injury healed. He's still keeps asking for a shower, to get out of bed, for water, Sprite and grapes. Unfortunately none of those small pleasures are in the cards for today. No liquids until the pneumonia is cleared up and they do swallow studies to make sure we're ready for liquids and then food.
The great news is that he's making progress. The doctors are really pleased and say we'll see more progress everyday. Today I finally feel more relaxed and greatly relieved, but because patience is a virtue I have very little of, my mind rushes off into the future. When can we get back to our lives? Soon I hope.
Dawn
Saturday, January 17, 2009
Improvements Bring Challenges 1-17-09
There is so much progress to be thankful for today. Jay is so much more aware, more verbal, and has more movement and strength. But this awareness has made it so much more frustrating for him, as he is aware of his discomfort.
He knows he is battling pneumonia. (I'm told that 65% of stroke victims experience pneumonia at this stage, so it is not uncommon). The medical management of pneumonia is really difficult. I don't need to give you the gory details, but suctioning looks like a really miserable experience.
He wants to get out of bed. The bed is too short for him and his feet hang off. He's hooked up to all kinds of monitors which are constantly beeping, he still can't have anything by mouth and he's begging for water, ice, Sprite. His head hurts from his second surgery, the lights stay on all the time. He's really restless and can't get comfortable. He can't move very much as they try to protect his head.
It is so hard to watch him be so miserable and not be able to help. I am thrilled with the improvement in his level of consciousness and his ability to express himself, but it breaks my heart when he says "I need a psychological break", and there is nothing I can do for him.
He wants to get out of bed and go home, but he knows we are are not ready for that.
He is being such a trooper and has a sense of humor and a great attitude. When a couple of the nurses apologized for the things they are doing that cause so much discomfort and explain the necessity, he stated that he understands and appreciates it. It's hard for me and Dev to witness how physically miserable he is right now. I'll be so relieved when he's even more stable and physically confortable.
This whole deal is going to be really hard for him, because cognitively and verbally he has no deficits. The doctors have great optimism for a great deal of recovery, and I'm impatient and I want it now!!!!
Dawn
He knows he is battling pneumonia. (I'm told that 65% of stroke victims experience pneumonia at this stage, so it is not uncommon). The medical management of pneumonia is really difficult. I don't need to give you the gory details, but suctioning looks like a really miserable experience.
He wants to get out of bed. The bed is too short for him and his feet hang off. He's hooked up to all kinds of monitors which are constantly beeping, he still can't have anything by mouth and he's begging for water, ice, Sprite. His head hurts from his second surgery, the lights stay on all the time. He's really restless and can't get comfortable. He can't move very much as they try to protect his head.
It is so hard to watch him be so miserable and not be able to help. I am thrilled with the improvement in his level of consciousness and his ability to express himself, but it breaks my heart when he says "I need a psychological break", and there is nothing I can do for him.
He wants to get out of bed and go home, but he knows we are are not ready for that.
He is being such a trooper and has a sense of humor and a great attitude. When a couple of the nurses apologized for the things they are doing that cause so much discomfort and explain the necessity, he stated that he understands and appreciates it. It's hard for me and Dev to witness how physically miserable he is right now. I'll be so relieved when he's even more stable and physically confortable.
This whole deal is going to be really hard for him, because cognitively and verbally he has no deficits. The doctors have great optimism for a great deal of recovery, and I'm impatient and I want it now!!!!
Dawn
Friday, January 16, 2009
January 16, 2009
We're making progress!! Today dad was speaking to us. He is being very demanding; he wants to get out of bed, get something to drink ("sprite with lots of ice and a straw") and he even asked if he could come with us. Thank you so much to the Western State family, mom and I spent many hours at my dad's bed side having fun with his cards and gifts. Dad was eager to know "what's in the box??" We are going to start reading the cards to him tomorrow, he will be thrilled to hear from all of you. He is dealing with a bit of pneumonia which thank goodness seems to be resolving with a full court press of antibiotics. Keeping his lung function good is very important, and is a challenge with stroke victims at this stage of their recovery. The doctor's reassure us that the cognitive and speech parts of his brain have been totally unaffected. So its only a matter of time before we will all get the Jay we know and love back!!!!! The miracle is happening, keep praying everyone, you all have a hand in this recovery, and we are so grateful!
Dev
Thursday, January 15, 2009
medical update for Wednesday, January 15
Whew!! Jay had another procedure to prevent brain swelling!! We've made it through this "minor" bump in the road and Jay is doing so much better. He's more alert and is asking to write.
It's amazing and very cool. He communicated with his colleagues who came to visit, which I think relieved his mind as he starting giving them orders. He breaks our hearts with pleas to rescue him ("free me"). All this with a pen! His healing from the stroke is starting to progress, and we're so thankful. Keep praying. It's working!!
Dawn and Dev
January 15, 2009
Dear friends and family,
We are so blessed to have such wonderful attentive loved ones that are interested in Jay's progress. We are also blessed to have such an amazing father/husband that has gained so much respect from so many people. Because Dawn is so busy and spending much of her time by Jay's side, it is difficult for her to talk to everyone who is concerned about Jay's health and recovery. We set up this blog so that you will all be able to see all of the latest updates and Dawn can post new announcements as they come. So keep checking the blog and hopefully each time you will find more news of progress and recovery. Thank you for all of your love, prayers and support, keep it coming! Also, if you would like to post a comment on the page for Jay to see as he goes through this process, we would greatly appreciate to hear from all of you. We love you!
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