We have been thinking about how to bring this blog to a close. How do we say goodbye to all of you who have followed Jay's progress and sent prayers, positive thoughts, and well wishes? We are so blessed with the MIRACLE of Jay's life and recovery, and we know that so much loving energy sent our way has been instrumental in bringing him back.
We've been at home for a week, and it has been wonderful. It was like a time warp to walk back in to Xmas cards, cookies, and decorations. It's taken the entire week to get organized and we still have a way to go. Our town is welcoming us home with open arms and Gunnison greetings, and "normal life" never felt so good.
Jay is doing great. As hair grows over the scars on his head, it's hard to see the signs of our Salt Lake City journey. But we have both been changed and will continue to grow from this experience. A few more weeks and Jay goes back to work part time, to regain his stamina in the workplace. Life is therapy now, as Jay continues to recover at home and in community.
Jay has been touched by your cards and messages, and wishes he could respond to all of you. Perhaps a good way to stay in touch would be via our home email. Please feel free to contact us at djhelman@msn.com
It brings tears to my eyes and I am at a loss for words, but we are officially SIGNING OFF!
So much love and thanks from Dawn, Jay, and Devanie.
Friday, March 27, 2009
Sunday, March 15, 2009
The Return Home
Our last Sunday in Salt Lake City! My brother Mark will accompany us on the drive back to Gunnison this Thursday March 19th. After all this time, it's hard to believe we're coming home! I will miss Salt Lake City, and the people and places that have become part of our lives.....but it's time and we're ready. When we flew in here on an Air-Med flight on January 12th, if someone had told me we'd be here until March 19th, I'd probably have had a nervous breakdown, or simply not believed them. There's no way to comprehend all that's happened to us, and we've lived it!
The road back has been a journey of personal growth for both of us. We're still processing what it all means, but we know Jay has been gifted with a second chance at life. There's been a silver lining as well as lots of challenges. He's coming home with a buzz cut and a cane (both temporary), and is still accessing higher level abilities and skills. His personality and his confidence are re-emerging, as a stroke and brain injury is a humbling experience. Jay will continue to recover, but returning home to our lives is the next phase.
The silver lining lies in the growing, learning, changing, accepting, and pondering we've both had to do, and in the strength, gratitude, and openess we've been blessed with. We left in the dead of winter and we come home in the spring. It feels like a rebirth full of new opportunites and possibilities.
The road back has been a journey of personal growth for both of us. We're still processing what it all means, but we know Jay has been gifted with a second chance at life. There's been a silver lining as well as lots of challenges. He's coming home with a buzz cut and a cane (both temporary), and is still accessing higher level abilities and skills. His personality and his confidence are re-emerging, as a stroke and brain injury is a humbling experience. Jay will continue to recover, but returning home to our lives is the next phase.
The silver lining lies in the growing, learning, changing, accepting, and pondering we've both had to do, and in the strength, gratitude, and openess we've been blessed with. We left in the dead of winter and we come home in the spring. It feels like a rebirth full of new opportunites and possibilities.
Sunday, March 8, 2009
Milestones
It was hard to say goodbye to my sister Tammy yesterday and our daughter Devanie today. Their presence made this rehab adventure away from home so much more fun. Jay had intense outpatient therapy everyday this week, and on Saturday we went out to lunch AND dinner to celebrate our visitors and our daughter's birthday. Jay's stamina is improving as he spends time in the world. Sunday is a day of rest and the quiet today has been restorative to us both.
So many milestones this week. We returned our wheelchair and Jay is cruising around with only a cane he uses for balance and security. The staples are out of his head, and there's no more Frankenstein zipper. He's doing "assignments" for speech and occupational therapy that I'm glad I don't have to do. (powerpoint presentations, math problems, budget problems, driving tests.)
Jay is ready to be done with therapy, but he is gaining much confidence as he accesses the skills and abilities he had before his stroke.
We continue to be grateful and awed by this miracle of recovery, and we often reflect on our blessings. Thank you all for your thoughts, prayers, encouragement and love. It has meant a lot to us.
So many milestones this week. We returned our wheelchair and Jay is cruising around with only a cane he uses for balance and security. The staples are out of his head, and there's no more Frankenstein zipper. He's doing "assignments" for speech and occupational therapy that I'm glad I don't have to do. (powerpoint presentations, math problems, budget problems, driving tests.)
Jay is ready to be done with therapy, but he is gaining much confidence as he accesses the skills and abilities he had before his stroke.
We continue to be grateful and awed by this miracle of recovery, and we often reflect on our blessings. Thank you all for your thoughts, prayers, encouragement and love. It has meant a lot to us.
Sunday, March 1, 2009
Progress Continues
Jay has completed one week out of the hospital and one week of outpatient therapy, and his progress continues. Jay is walking really well and is now focusing on strength, balance, and stamina. We took a good walk today and Jay chose to use the stairs instead of the elevator in the hotel.
Jay is spending time each day reading books, magazines, and newspapers, which is helping to build mental endurance. He also spends time resting. We're told that a healing brain needs to either "be on or be off". The miraculous plasticity of the brain enables the brain to heal itself during times of rest, and to regain function during times of focused concentrated effort.
Tomorrow we begin a new phase. We'll have intense 5 day a week therapy at a community based outpatient clinic. Jay believes that recovery is his job right now. Add to Jay's therapy schedule, a doctor appointment, lab visit, and a visit to the nerosurgeon to get the staples out of his head, and the next few days will be busy with work on recovery.
It's great to be out of the hospital, and we're cozy at the University Guesthouse, our home away from home, but there's nothin' like the real thing, and we are excited to get home to Gunnison. Thanks so much for your continued thoughts, prayers, emails, and cards. We are grateful for your understanding, as I know many of you are carrying a greater load in our absence.
Jay is spending time each day reading books, magazines, and newspapers, which is helping to build mental endurance. He also spends time resting. We're told that a healing brain needs to either "be on or be off". The miraculous plasticity of the brain enables the brain to heal itself during times of rest, and to regain function during times of focused concentrated effort.
Tomorrow we begin a new phase. We'll have intense 5 day a week therapy at a community based outpatient clinic. Jay believes that recovery is his job right now. Add to Jay's therapy schedule, a doctor appointment, lab visit, and a visit to the nerosurgeon to get the staples out of his head, and the next few days will be busy with work on recovery.
It's great to be out of the hospital, and we're cozy at the University Guesthouse, our home away from home, but there's nothin' like the real thing, and we are excited to get home to Gunnison. Thanks so much for your continued thoughts, prayers, emails, and cards. We are grateful for your understanding, as I know many of you are carrying a greater load in our absence.
Wednesday, February 25, 2009
The Unfolding Miracle
We are so blessed and I have been witness to a true miracle. I feel sad and even a little guilty when I see others who have not had a recovery like Jay's, or those who will not walk again. Today in PT when they were challenging Jay by having him walk outside on different surfaces, (rocks, grass, hills) I was so grateful that we will still be able to hike together. When a loved one is devastated by a stroke, and is working on recovery, the fear and the grief of what might not come back and what might be lost forever is a constant.
We have video clips of Jay taken by one of his physical therapists as he struggled to relearn to walk and regain his motor abilities. You would have to see these clips to understand the enormity of his recovery. He has come so far, it is miraculous.
When we're not working with the physical therapists we still use a wheelchair to cruise around because we don't want to get too cocky, but Jay will come home on his feet. He has regained the strength and dexterity of his left hand and arm, which was so important to him.
The University of Utah Hospital has 2 outpatient rehab clinics. This week (post surgery) we continued to go to the one we attended as an inpatient at University Hospital. It's been wonderful to see our friends, the doctors, therapists, and other patients. It's been great for them to see Jay with his bone in place, and to celebrate his amazing progress. Jay does not take credit for his recovery. We know this miracle is a result of the gifted surgeons, the talented rehab staff, the incredible therapists, the doctors who offered us friendship, and the prayers, love, and support of all of you.
Next week we begin outpatient therapy at University Hospital's community based clinic. We'll have intensive 5 day a week therapy, which will be more related to transition back to work and community. Jay has been heroic on this journey, and has gained much from this challenge. You've heard the terms, "a stroke of genius, a stroke of insight, a stroke of luck." To have a stroke is to experience a lightning bolt of awareness or transformation. It truly can be a blessing.
We have video clips of Jay taken by one of his physical therapists as he struggled to relearn to walk and regain his motor abilities. You would have to see these clips to understand the enormity of his recovery. He has come so far, it is miraculous.
When we're not working with the physical therapists we still use a wheelchair to cruise around because we don't want to get too cocky, but Jay will come home on his feet. He has regained the strength and dexterity of his left hand and arm, which was so important to him.
The University of Utah Hospital has 2 outpatient rehab clinics. This week (post surgery) we continued to go to the one we attended as an inpatient at University Hospital. It's been wonderful to see our friends, the doctors, therapists, and other patients. It's been great for them to see Jay with his bone in place, and to celebrate his amazing progress. Jay does not take credit for his recovery. We know this miracle is a result of the gifted surgeons, the talented rehab staff, the incredible therapists, the doctors who offered us friendship, and the prayers, love, and support of all of you.
Next week we begin outpatient therapy at University Hospital's community based clinic. We'll have intensive 5 day a week therapy, which will be more related to transition back to work and community. Jay has been heroic on this journey, and has gained much from this challenge. You've heard the terms, "a stroke of genius, a stroke of insight, a stroke of luck." To have a stroke is to experience a lightning bolt of awareness or transformation. It truly can be a blessing.
Monday, February 23, 2009
Goodbye Hospital
After being in the hospital since January 12th, Jay came "home" to my hotel room today. We are so thankful to be at this stage in the journey. Getting the bone flap replaced is a monumental step forward. The doctors are amazed at Jay's recovery and gratified that their aggresssive surgeries resulted in such a positive outcome. Jay has a million staples in his head. The staples come out in 10-14 days, so he's going to be scary looking for awhile!
Jay is getting better everyday, and now we begin outpatient therapy to continue his recovery. Only about 3 1/2 weeks and then it's home, sweet, home.
Jay is getting better everyday, and now we begin outpatient therapy to continue his recovery. Only about 3 1/2 weeks and then it's home, sweet, home.
Sunday, February 22, 2009
A Peaceful Day Today
All is well as Jay continues to recover from the surgery to replace his cranial bone. Discharge is planned for tomorrow. The day has been a lovely balance of activity and rest. Jay and I both took walks and now it's quiet and peaceful in our room. Our "roomate" was discharged today and with a little bit of luck this will be our "private room" from which to view the Academy Awards. In view of all that's happened it's such a treat to savor these sweet peaceful moments.
Friday, February 20, 2009
"Closing a Chapter"
Jay's surgery to replace his cranial bone went great! I just visited him in the recovery room, and in response to my question about how he felt, he said "I have one helluva headache, but besides that I feel fine." He then asked me to call the college and get a message to the Board of Trustees, currently in a meeting, to inform them that he is out of surgery and doing well. He's definitely got his head back in the game.
The surgeon who took the bone off and replaced it, told me it was gratifying for him to witness the extraordinary value of the aggressive treatment they gave Jay. Removing that bone prevented increasing intracranial pressure from causing damage or death, and closing Jay's cranial vault puts closure on this chapter. Jay is doing so well that he is not going to the ICU, but is going directly to the regular floor. He should be discharged from the hospital in a few days and will begin outpatient therapy and life in the world. I am so excited!!!
The rec therapy trip to the gym to play basketball yesterday was amazing. The automaticity of movement in such a familiar and comfortable environment was remarkable. It was an exhilarating, exciting, and ultimately emotional experience for all of us.
Thank you for all the positive energy directed our way. I am sure that Jay's recovery and my ability to hang in there, is in direct proportion to the power of your thoughts and prayers!
The surgeon who took the bone off and replaced it, told me it was gratifying for him to witness the extraordinary value of the aggressive treatment they gave Jay. Removing that bone prevented increasing intracranial pressure from causing damage or death, and closing Jay's cranial vault puts closure on this chapter. Jay is doing so well that he is not going to the ICU, but is going directly to the regular floor. He should be discharged from the hospital in a few days and will begin outpatient therapy and life in the world. I am so excited!!!
The rec therapy trip to the gym to play basketball yesterday was amazing. The automaticity of movement in such a familiar and comfortable environment was remarkable. It was an exhilarating, exciting, and ultimately emotional experience for all of us.
Thank you for all the positive energy directed our way. I am sure that Jay's recovery and my ability to hang in there, is in direct proportion to the power of your thoughts and prayers!
Thursday, February 19, 2009
Graduation Day
Today is Jay's last day in rehab! His physical therapists are celebrating by taking him to a gym on campus to shoot some hoops. This trip will be Jay's first day outside the hospital since Jan 12th! We're ready to go, we need to go, and because our outpatient therapy will take place at this same University of Utah clinic, we will be able to maintain our support system and our connection to this community.
Tomorrow is Jay's surgery to replace his cranial bone flap. Our hope is that he'll be discharged from the hospital as early as Monday, and will begin outpatient therapy the next day. Please keep us in your prayers as we take this next major step in Jay's recovery. He continues to make amazing progress and we've been told that huge steps forward will happen simply with the closing of the cranial vault.
It will be good to be so close to our doctors and therapists when I bring Jay "home" to the University Guesthouse. Their expertise and guidance as Jay reintegrates into life outside the hospital gives me a great sense of security. Our stroke team has left no stone unturned and has found what they believe to be the cause of Jay's stroke; a clotting factor in his blood which is now being treated with medication. It gives us a great sense of relief that this determination has been made and can prevent another stroke.
I'm feeling so blessed as we finish another chapter in this remarkable journey. As Jay "graduates" from rehab, this no longer feels catastrophic, but transformative. We move forward with faith in the unfolding.
Tomorrow is Jay's surgery to replace his cranial bone flap. Our hope is that he'll be discharged from the hospital as early as Monday, and will begin outpatient therapy the next day. Please keep us in your prayers as we take this next major step in Jay's recovery. He continues to make amazing progress and we've been told that huge steps forward will happen simply with the closing of the cranial vault.
It will be good to be so close to our doctors and therapists when I bring Jay "home" to the University Guesthouse. Their expertise and guidance as Jay reintegrates into life outside the hospital gives me a great sense of security. Our stroke team has left no stone unturned and has found what they believe to be the cause of Jay's stroke; a clotting factor in his blood which is now being treated with medication. It gives us a great sense of relief that this determination has been made and can prevent another stroke.
I'm feeling so blessed as we finish another chapter in this remarkable journey. As Jay "graduates" from rehab, this no longer feels catastrophic, but transformative. We move forward with faith in the unfolding.
Sunday, February 15, 2009
Light at the End of the Tunnel
We are getting so ready to come home. I told Jay I see the light at the end of the tunnel, and he replied "I want to be in the light!" The surgeon who will replace Jay's bone flap is available on Feb 20th, so that's the next big hurdle. Once that is done, we'll be discharged from the hospital, and have chosen to stay in Salt Lake City for a few weeks to do outpatient therapy.
The farther Jay goes on the road to recovery, obviously the more ready he is to leave the rehab setting. We are both starting to long for peace and quiet, more privacy, and more environmental control. We are ready to join our community, our co-workers and our friends, and get back to Gunnison in time for spring. (well, mud season anyways)
Jay continues to progress and grow stronger on his feet daily. He has had to face the challenge of another round of c-diff, the intestinal bacteria. It's been very frustrating, but not as bad as the first time. We are both relieved and thrilled about the function he has gained in his left hand and arm. Working your way back from a stroke is very hard work, and Jay has become my hero as he steps up to meet each challenge. I am aware that not everyone who has a stroke is as lucky as Jay, and I am grateful for his recovery.
We have been touched and amazed by the oupouring of love and support from all of you. Your thoughts, prayers, gifts, and cards have made a fierce situation much gentler. Thank you.
The farther Jay goes on the road to recovery, obviously the more ready he is to leave the rehab setting. We are both starting to long for peace and quiet, more privacy, and more environmental control. We are ready to join our community, our co-workers and our friends, and get back to Gunnison in time for spring. (well, mud season anyways)
Jay continues to progress and grow stronger on his feet daily. He has had to face the challenge of another round of c-diff, the intestinal bacteria. It's been very frustrating, but not as bad as the first time. We are both relieved and thrilled about the function he has gained in his left hand and arm. Working your way back from a stroke is very hard work, and Jay has become my hero as he steps up to meet each challenge. I am aware that not everyone who has a stroke is as lucky as Jay, and I am grateful for his recovery.
We have been touched and amazed by the oupouring of love and support from all of you. Your thoughts, prayers, gifts, and cards have made a fierce situation much gentler. Thank you.
Wednesday, February 11, 2009
WOW!
What a great day! Great strides! Literally! Jay's climbing stairs, actually broke into a jog, doing defensive slides and lateral moves. We are so relieved that the transient deficit in his left hand and arm has been diagnosed, and can be resolved. We are really moving now!
Tuesday, February 10, 2009
All Systems Go
I spoke with Jay about the blog and he feels very comfortable with it. He feels that it is a great way to keep in touch with people and to update folks on his progress. So it is with his blessing that I continue.....................
This has been a real wild ride. Disneyworld's "Tower of Terror" and "Expedition Everest" have nothing on the ups and downs of this journey. Jay has been working so hard in therapy and is making remarkable progress. His steep and fast ascent in the last month has amazed the doctors and the rehab team. Jay's stroke deficits are on his left side, and we have all felt relieved and estatic as he gains back the use of his left side.
The latest stumbling block has been mysterious and very frustrating. For the past few days Jay's left hand and arm have been coming "on and off line." At times it's all systems go, and at other times his left hand and arm does not respond to his concentrated focus to move the way he wants it to. The fluctuation in the degree of function has been very puzzling to the team and supremely frustrating for Jay. The team has done all kinds of diagnostics, and with experimentation have found that his left hand and arm responds to increased fluid volume, a carefully titrated blood pressure and certain body positions. They assure us that because he has good function some of the time, this will resolve, but it's been but yet another unexpected, frustrating and scary thing on this intense journey. Jay's new saying. "if it wasn't this, it would be something else!"
We're getting close to the next important phase of this recovery process. On February 20th, Jay will have the surgery to replace the cranial bone he had removed to prevent increased intracranial pressure, secondary to the post surgical and post stroke swelling of his brain. Believe it or not, this bone has been waiting in the freezer here at University Hospital. (I told you we were in the right place!) This rather standard procedure will necessitate a few days in ICU, a move to the floor, and then discharge!!!
We have decided to stay in Salt Lake City for a few weeks following discharge to do outpatient therapy here at University Hospital. Dr. Edgely and this team is very invested in Jay as he is in them. Jay's trust in their expertise, their belief that Jay can return to full function, and the relationships they have built, makes this a winning team. After a few weeks of outpatient therapy we will return to our home sweet home, Gunnison Colorado!! AMEN!
This has been a real wild ride. Disneyworld's "Tower of Terror" and "Expedition Everest" have nothing on the ups and downs of this journey. Jay has been working so hard in therapy and is making remarkable progress. His steep and fast ascent in the last month has amazed the doctors and the rehab team. Jay's stroke deficits are on his left side, and we have all felt relieved and estatic as he gains back the use of his left side.
The latest stumbling block has been mysterious and very frustrating. For the past few days Jay's left hand and arm have been coming "on and off line." At times it's all systems go, and at other times his left hand and arm does not respond to his concentrated focus to move the way he wants it to. The fluctuation in the degree of function has been very puzzling to the team and supremely frustrating for Jay. The team has done all kinds of diagnostics, and with experimentation have found that his left hand and arm responds to increased fluid volume, a carefully titrated blood pressure and certain body positions. They assure us that because he has good function some of the time, this will resolve, but it's been but yet another unexpected, frustrating and scary thing on this intense journey. Jay's new saying. "if it wasn't this, it would be something else!"
We're getting close to the next important phase of this recovery process. On February 20th, Jay will have the surgery to replace the cranial bone he had removed to prevent increased intracranial pressure, secondary to the post surgical and post stroke swelling of his brain. Believe it or not, this bone has been waiting in the freezer here at University Hospital. (I told you we were in the right place!) This rather standard procedure will necessitate a few days in ICU, a move to the floor, and then discharge!!!
We have decided to stay in Salt Lake City for a few weeks following discharge to do outpatient therapy here at University Hospital. Dr. Edgely and this team is very invested in Jay as he is in them. Jay's trust in their expertise, their belief that Jay can return to full function, and the relationships they have built, makes this a winning team. After a few weeks of outpatient therapy we will return to our home sweet home, Gunnison Colorado!! AMEN!
Sunday, February 8, 2009
Movin' Right Along
I'm aware that so many of our family and friends depend on this blog to hear news of Jay, and check it quite frequently (surely not as often as I check my email while I'm here.) I wanted you to know that Jay is doing so well, that no news is good news. I also agree with Dr. Edgely who feels that at this point, Jay needs to be more personally involved with the blog.
I will communicate with Jay about his feelings about the blog. It was begun by our daughter who knew that there was no way I had time to communicate with all those who needed and wanted to know how Jay was doing. Now that Jay is recovering, I feel it necessary and respectful to make sure he is comfortable with my blog entries. Who knows? The next blog entry might come from the big guy himself!
We have a discharge plan in place. I am afraid to publicly announce the details because I'm afraid to jinx it. But breathe a collective sigh of relief to know that we are movin' right along! Jay is even more amazing now that he has been through this powerful experience. His quick wit is as sharp as ever, and his compassion and sense of humor seem to be heightened.
Thanks to all of you who care and those of you who lift up your hearts in prayer. Jay and I have a ways to go, but don't we all.............?
I will communicate with Jay about his feelings about the blog. It was begun by our daughter who knew that there was no way I had time to communicate with all those who needed and wanted to know how Jay was doing. Now that Jay is recovering, I feel it necessary and respectful to make sure he is comfortable with my blog entries. Who knows? The next blog entry might come from the big guy himself!
We have a discharge plan in place. I am afraid to publicly announce the details because I'm afraid to jinx it. But breathe a collective sigh of relief to know that we are movin' right along! Jay is even more amazing now that he has been through this powerful experience. His quick wit is as sharp as ever, and his compassion and sense of humor seem to be heightened.
Thanks to all of you who care and those of you who lift up your hearts in prayer. Jay and I have a ways to go, but don't we all.............?
Thursday, February 5, 2009
Counting Our Blessings
It's hard to believe how much has changed in one week. This week has been as wonderful as last week was miserable. Jay is doing so great and can actually joke about c-diff now. He's got a funny schtick going with Dr. Edgely about everyone wearing a t-shirt during physical therapy that says, "C Diff - Movement You Can Count On!" We do a lot of laughing around here and are really having quite a good time (relatively speaking). Jay's motto has always been, "if you're not having fun, it's your own darn fault."
I am now at a place in this incredible process in which I am counting our blessings and being grateful for this miracle. Our blessings, let me count them: Denver being snowed in so we got flown to this amazing hospital and stroke clinic, the skilled surgeons who saved Jay's life, the location of the stroke in Jay's brain, our dream team of rehab doctors, the speed and degree of Jay's recovery.
The rehab staff are all angels and bless us with their kindness, expertise, understanding, and guidance. Believe it or not, I will miss the community of this rehab unit. Those who have been wounded in some way, their loved ones, and the angels who help us find our way back, are like a family. And how I love my sweet little home in the University Guest House with the lights of Salt Lake City sparkling below. The great blessing of the outpouring of love, support, prayers, cards, special packages, cheers, flowers, and friendship, has carried us through this with all of you wrapped around us.
And the good news: we're making such great progress that we're putting a discharge plan in place!!! Yes it's true, the light at the end of this tunnel is growing brighter. Let us all count our blessings.........................
I am now at a place in this incredible process in which I am counting our blessings and being grateful for this miracle. Our blessings, let me count them: Denver being snowed in so we got flown to this amazing hospital and stroke clinic, the skilled surgeons who saved Jay's life, the location of the stroke in Jay's brain, our dream team of rehab doctors, the speed and degree of Jay's recovery.
The rehab staff are all angels and bless us with their kindness, expertise, understanding, and guidance. Believe it or not, I will miss the community of this rehab unit. Those who have been wounded in some way, their loved ones, and the angels who help us find our way back, are like a family. And how I love my sweet little home in the University Guest House with the lights of Salt Lake City sparkling below. The great blessing of the outpouring of love, support, prayers, cards, special packages, cheers, flowers, and friendship, has carried us through this with all of you wrapped around us.
And the good news: we're making such great progress that we're putting a discharge plan in place!!! Yes it's true, the light at the end of this tunnel is growing brighter. Let us all count our blessings.........................
Tuesday, February 3, 2009
The Race Continues
Please forgive me for the lapse in the blog updates. I have been busy, my sister came to visit and support me, I've had technical difficulties which my child Dev finally talked me through over the phone, and last night I left my power cord in Jay's room and my computer hibernated!
I am touched and honored that so many of you care about Jay and want to know how he's doing. His triumph in overcoming these challenges gives all of us hope that we too could make it to the finish line if faced with the race of our lives as Jay has been. Our dear friend Dr. Garren reminds me that "this is a marathon." This is the game and the race of Jay's life. We're all cheering for him, but it's his race to finish and his game to win.
I'm thrilled to report that he's back on track. Jay is finally winning the war over the dreaded closteridium difficile, the hospital acquired stomach bacteria. He's not 100%, but he's back. Now that he's not nauseated and can eat again, his diet has been upgraded and he's eating full meals. 2 weeks ago he was begging for Sprite, and now he's eating lasagna, cake, and key lime pie, and he's making up for lost time by drinking 2 Sprites with each meal!
It's an amazing experience to be part of this therapeutic community. The patients in rehab are recovering from strokes, trauma, traumatic brain injuries, amputations, surgeries, and debilitating illnesses. There are 3 young men who have sustained snowboarding/ski injuries. (Broken legs are one thing, spinal chord injuries are another...) Dr. Edgley has called Jay the superstar of rehab, but we are very blessed that his challenge/stroke is one that has such a good recovery potential. He's working hard on his left sided deficits, and makes the comment that "this is harder than it looks."
What a blessing that Jay is now enjoying the "simple" pleasures of life; eating, walking, reading, watching tv. It really is true that "you don't know what you've got 'till it's gone." A reminder to all of us..............
Saturday, January 31, 2009
Praise The Lord!
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...........................
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...........................
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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