REPORTING ON A PRETTY QUIET WEEKEND
We trust that all you readers had a peaceful and grateful thanksgiving. John has been resting a lot during the past three days - just what both doctors ordered.
Resting did not always mean sleeping, but there were no therapists around except respiratory. His lungs seem a bit clearer, at least there is a smidgen less coughing and suctioning going on. He was off the vent about 3 hours yesterday (half in the morning and half in the late afternoon); today he was off 3 hours straight in the morning. With Dr. Aslamy's real encouragement and a bit more pain medication, John did sit in "the chair" for an hour today. He didn't like it, but he did it and did not become diaphoretic. That's progress! Both doctors are pleased with his overall progress and some returning strength - he can raise both arms from the elbows now and waves to everyone entering the room. The slowly returning nerve re-growth is causing more pain and some muscle spasms.
The main obstacle has become the blood thinner, Coumadin. It has caused the upper leg wound to bleed and they had to remove the wound vac machine. Also, they have had to re-pack and dress the wound 4-5 times since last night because of bleeding. They are carefully watching John's blood results.
Yesterday we were surprised by visitors: our dear friends from New Mexico, Art and Lynda Garcia with daughter, Kristen, were in town and came with Robert and Janet McPherson. Then the Moores came down from Wickenburg. This was a lot of excitement, but John enjoyed it without overdoing.
So, we have specific prayer needs: Pray for another day of rest and "baby steps" of progress in preparation for some good OT and PT beginning Monday. Pray that John will be ready for the Speech Therapist to begin work on swallowing and using his voice box. And pray that the wound will stop bleeding and begin healing again; that the doctor will find a solution besides Coumadin.
Saturday, November 30, 2013
Thursday, November 28, 2013
Thursday, November 28, 2014 (early morning)
A DAY OF THANKSGIVING
John's journey has continued for the past two days. Tuesday was a pretty strong day although sitting in the chair seems uncomfortable and difficult for John. He did remain off the vent for 7 hours. The OT and the Speech Therapist came in the afternoon and did a remarkable workout with him. He sat on the edge of the bed with his right foot planted on the floor as they worked to keep him upright and holding his own head up! It's amazing the skills and insights they use to prompt his brain to learn to give those commands that will help him find a new center of gravity and balance as well as "fire" muscles to respond. One exercise was to have him lean forward by himself with arms outstretched to give me an actual hug with nothing between us - oh! the glorious feeling of connection for both of us! Breathing off vent and all vitals remained good and strong through this period - then he had a good nap. He was tired and put back on vent for the evening and night. Doctors and therapists were surprised and very happy with the accomplishments.
Then came Wednesday morning - John was extremely tired right from the beginning. He had a bad night with many interruptions, including an ultra sound which revealed a blood clot in his right arm (probably resulting from the Pic line) so now he is on more blood thinners. He slept through much of the morning and then got into the chair. After only 20 minutes he was having breathing difficulties and became diaphoretic with raised blood pressure. Reclining the chair helped John. Dr. Aslamy, the nurse and the OT were present and all agreed John "just was not himself today". Conclusion was that the previous 2 days of hard work had indeed taken their toll again which follows the GBS pattern of up-and-down. Prescription: bed rest, lots of sleep (which he does readily!), no physical therapies, and no time off the vent for the day. We may begin a short time off on Thursday. All of us need to learn more about "pacing" and monitoring during those times John shows no real stress during the workouts and "off vent."
My family celebrated their Thanksgiving Feast at the home of my nephew and his wife, Julia and Brandon Underwood because our "city workers" - firefighters and ambulance driver are working today. I did attend and enjoyed myself thoroughly. The food was so delicious and it was a wonderful chance to be with my family. My parents are frail, but they persevere and are in such good spirits. Hayden, (3) and baby Colton (4mos) laughed and sparkled and carried our thanksgiving forward into the future.
My heart is full of thanksgiving, just as it is each day, on this day that is set apart for thanking the Lord. The struggles have been many - and will continue - but John has beat all the odds so far and is still with us with a clear mind and in body, though weakened, and in his faithfulness in the healing power of Jesus Christ through the work of the Spirit. Praise the Lord!
My prayer for you today is Paul's prayer for the Philippians:
John's journey has continued for the past two days. Tuesday was a pretty strong day although sitting in the chair seems uncomfortable and difficult for John. He did remain off the vent for 7 hours. The OT and the Speech Therapist came in the afternoon and did a remarkable workout with him. He sat on the edge of the bed with his right foot planted on the floor as they worked to keep him upright and holding his own head up! It's amazing the skills and insights they use to prompt his brain to learn to give those commands that will help him find a new center of gravity and balance as well as "fire" muscles to respond. One exercise was to have him lean forward by himself with arms outstretched to give me an actual hug with nothing between us - oh! the glorious feeling of connection for both of us! Breathing off vent and all vitals remained good and strong through this period - then he had a good nap. He was tired and put back on vent for the evening and night. Doctors and therapists were surprised and very happy with the accomplishments.
Then came Wednesday morning - John was extremely tired right from the beginning. He had a bad night with many interruptions, including an ultra sound which revealed a blood clot in his right arm (probably resulting from the Pic line) so now he is on more blood thinners. He slept through much of the morning and then got into the chair. After only 20 minutes he was having breathing difficulties and became diaphoretic with raised blood pressure. Reclining the chair helped John. Dr. Aslamy, the nurse and the OT were present and all agreed John "just was not himself today". Conclusion was that the previous 2 days of hard work had indeed taken their toll again which follows the GBS pattern of up-and-down. Prescription: bed rest, lots of sleep (which he does readily!), no physical therapies, and no time off the vent for the day. We may begin a short time off on Thursday. All of us need to learn more about "pacing" and monitoring during those times John shows no real stress during the workouts and "off vent."
My family celebrated their Thanksgiving Feast at the home of my nephew and his wife, Julia and Brandon Underwood because our "city workers" - firefighters and ambulance driver are working today. I did attend and enjoyed myself thoroughly. The food was so delicious and it was a wonderful chance to be with my family. My parents are frail, but they persevere and are in such good spirits. Hayden, (3) and baby Colton (4mos) laughed and sparkled and carried our thanksgiving forward into the future.
My heart is full of thanksgiving, just as it is each day, on this day that is set apart for thanking the Lord. The struggles have been many - and will continue - but John has beat all the odds so far and is still with us with a clear mind and in body, though weakened, and in his faithfulness in the healing power of Jesus Christ through the work of the Spirit. Praise the Lord!
My prayer for you today is Paul's prayer for the Philippians:
I thank my God every time I remember you, constantly praying with joy in every one of my prayers for all of you, because of your sharing in the gospel from the first day until now. I am confident of this, that the one who began a good work among you will bring it to completion by the day of Jesus Christ. It is right for me to think this way about all of you, because you hold me in your heart, for all of you share in God’s grace with me. (Philippians 1:3-7 NRSV)
Monday, November 25, 2013
Monday, November 25, 2013 9:30pm
HOORAY! TWO GOOD DAYS IN A ROW
Yesterday I held off posting because of the up-and-down nature of John's struggle. But tonight I am so happy to report that John has had two good days in a row! Here is the report -
Sunday: John started out quite alert and ready to tackle "the chair". He stayed in the chair a little over two hours and was off the vent for an hour before tiring. The lung infection is improving, but it also means more coughing (which is returning for him) and more frequent deep suctioning by the therapists. John has learned to signal for help and is always glad when this is done because he immediately feels better. He had a nap after the visit by Dee Ann and Tom. Then our friends, Mary Danforth and Jeanette Miller, came to help out. Mary was the witness and Jeanette was the Notary Public who witnessed John's answers and his signature to establish my Durable Power of Attorney. This was such an important accomplishment and I am so grateful to these two ladies. The rest of the day was peaceful and John got a lot of rest.
Monday: John struggled to wake up this morning, but was alert for the visits by his doctors and he participated in a good workout with the OT. His right side is definitely weaker than the left, but the therapist felt he was getting some muscle response which has been a concern of the neurologist. John was eager to get in the chair, but staff was short and it was noon before that happened. I left him in the chair and off the vent to go eat lunch, only to return and find him back in bed. Evidently, they thought he was too tired because he fell asleep. An hour was far short of the three hours in the chair we had been aiming for today. However, he was off the vent for four hours with no problems. His leg wounds were inspected and approved by the special wound doctor and then re-dressed. He also worked hard with the PT on his legs.
But here is the best part! The Speech Therapist happened to come in for another reason and offered to suction John's lungs. She then asked John if he was willing for her to check for his voice which he agreed to do. By clearing his throat well and using her fingers on the trac opening to work with his own breathing in and out, John said words! His voice worked! She had him turn to me and he said "I love you!" We all wept with such joy! The Lord is so good.
These milestones renew our hope and we are eager to progress, but we are still in the tunnel and the road is long - and will be rocky. Despite the exclamation point above, let me remind you readers, that "a good day" is relative and progress is measured in inches (or less) - and the Guillain-Barre is still fighting to be in charge. John, however, is tough and determined - and your prayers invoking God's faithfulness and mercy shall surely bear fruit in His good time. As always, thank you.
Yesterday I held off posting because of the up-and-down nature of John's struggle. But tonight I am so happy to report that John has had two good days in a row! Here is the report -
Sunday: John started out quite alert and ready to tackle "the chair". He stayed in the chair a little over two hours and was off the vent for an hour before tiring. The lung infection is improving, but it also means more coughing (which is returning for him) and more frequent deep suctioning by the therapists. John has learned to signal for help and is always glad when this is done because he immediately feels better. He had a nap after the visit by Dee Ann and Tom. Then our friends, Mary Danforth and Jeanette Miller, came to help out. Mary was the witness and Jeanette was the Notary Public who witnessed John's answers and his signature to establish my Durable Power of Attorney. This was such an important accomplishment and I am so grateful to these two ladies. The rest of the day was peaceful and John got a lot of rest.
Monday: John struggled to wake up this morning, but was alert for the visits by his doctors and he participated in a good workout with the OT. His right side is definitely weaker than the left, but the therapist felt he was getting some muscle response which has been a concern of the neurologist. John was eager to get in the chair, but staff was short and it was noon before that happened. I left him in the chair and off the vent to go eat lunch, only to return and find him back in bed. Evidently, they thought he was too tired because he fell asleep. An hour was far short of the three hours in the chair we had been aiming for today. However, he was off the vent for four hours with no problems. His leg wounds were inspected and approved by the special wound doctor and then re-dressed. He also worked hard with the PT on his legs.
But here is the best part! The Speech Therapist happened to come in for another reason and offered to suction John's lungs. She then asked John if he was willing for her to check for his voice which he agreed to do. By clearing his throat well and using her fingers on the trac opening to work with his own breathing in and out, John said words! His voice worked! She had him turn to me and he said "I love you!" We all wept with such joy! The Lord is so good.
These milestones renew our hope and we are eager to progress, but we are still in the tunnel and the road is long - and will be rocky. Despite the exclamation point above, let me remind you readers, that "a good day" is relative and progress is measured in inches (or less) - and the Guillain-Barre is still fighting to be in charge. John, however, is tough and determined - and your prayers invoking God's faithfulness and mercy shall surely bear fruit in His good time. As always, thank you.
Saturday, November 23, 2013
Saturday, November 23, 2013 10:15pm
A BRIEF UPDATE
Each day does not give a clue to the changes that may take place the following day. It turns out that John has a "resistant strain" of bacteria in his lungs, so today he was put in isolation. Basically, this just means everyone robes up and wears gloves when entering the room, primarily because it is dangerous to other patients on the floor. Three doctors seem pleased that the offending bacteria could now be attacked with specific drugs and a new antibiotic was started today. John was not as good today at all - perhaps primarily because his lungs are really laboring even on the ventilator. Perhaps just because Guillain-Barre is just being nasty again. He did, however, sit in the chair for 1.5 hours. It was a real struggle for him, but the result was that the respiratory therapist was able to suction a lot of "gunk" out of his lungs. When I left this evening he was sleeping soundly and breathing easier.
Each day does not give a clue to the changes that may take place the following day. It turns out that John has a "resistant strain" of bacteria in his lungs, so today he was put in isolation. Basically, this just means everyone robes up and wears gloves when entering the room, primarily because it is dangerous to other patients on the floor. Three doctors seem pleased that the offending bacteria could now be attacked with specific drugs and a new antibiotic was started today. John was not as good today at all - perhaps primarily because his lungs are really laboring even on the ventilator. Perhaps just because Guillain-Barre is just being nasty again. He did, however, sit in the chair for 1.5 hours. It was a real struggle for him, but the result was that the respiratory therapist was able to suction a lot of "gunk" out of his lungs. When I left this evening he was sleeping soundly and breathing easier.
Saturday, November 23, 2013 6:00am
RESTING AND WAITING ARE PAYING OFF
The roller coaster for John hit a more even spot on Thursday. Blood pressures and oxygen levels evened out within acceptable levels. He remained in bed and slept a lot, but was able to participate in the very low level PT and OT in his bed - mostly stretching and bending. The neurologist came in to consult with our primary doctor. Their general conclusion is that he is generally stronger than when he left the ICU despite all the setbacks, many of which "fit" the Guillain-Barre Syndrome. They do observe slight improvement in a few spots of muscle tone. The decision was made to "stay the course" and watch closely rather than begin another round of IVIG treatments. He ran low-grade fevers off and on, so they lab tested everything looking for infection - except his leg wounds which continue to heal marvelously and cause virtually no pain (only during dressing changes every 2 days). Right now he is no longer complaining of "phantom" leg pain.
He also spent almost 2 hours sitting in his special chair again - the first time since Nov. 17. Surprisingly, John did not want to sit up and was quite anxious - probably a result of the over-extension of the previous weekend which caused such distress. He continues on the ventilator and it will probably be early next week before any attempt is made to begin weaning him off again. John had been switched to a different nutritional food through his tube and is tolerating that very well and getting stronger. This was a day with no setbacks.
When I arrived Friday morning I learned John did have pneumonia again, so he is now back on two IV antibiotics and increased suctioning which should take care of it. But the bright spot was that John was more alert and engaged in "conversation" with me. This means he moves his tongue and eyes vigorously and I try to interpret! Also, he wanted the TV news turned on and his glasses! This is the first time since surgery in Chandler and was exciting - it lasted about 8 minutes but made my morning! Now it is not unusual to see John trying to move his hands and fingers and wiggling his foot as well as turning his head. It is so exciting! He got lots of rest today and did not sit in the chair, but it felt like a good day.
As for me, I really appreciate the notes of encouragement about my own well-being that I receive. And I continue to enjoy reading your notes to John. I talk and/or text with all the children everyday. A friend took me to lunch on Thursday and another on Friday. These "outings" from the hospital room and the conversation were such a help. Dee Ann and Tom brought my parents to see John and we went out to dinner on Thursday. As many of you have mentioned, this is a very long and lonely road for me, but I try to focus on this day and not the immediate unknown future. I try to eat regular meals and sleeping at night has not been a problem. When I come home sometime between 9-10pm, I putter a bit with the mail and then go to bed - so exhausted that I fall asleep immediately. God has been good in providing the peace of mind I need to sleep. I know that John is going to beat this GBS monster. The excellent medical care, your prayers, God's faithfulness, and John's inner strength will make this happen.
The roller coaster for John hit a more even spot on Thursday. Blood pressures and oxygen levels evened out within acceptable levels. He remained in bed and slept a lot, but was able to participate in the very low level PT and OT in his bed - mostly stretching and bending. The neurologist came in to consult with our primary doctor. Their general conclusion is that he is generally stronger than when he left the ICU despite all the setbacks, many of which "fit" the Guillain-Barre Syndrome. They do observe slight improvement in a few spots of muscle tone. The decision was made to "stay the course" and watch closely rather than begin another round of IVIG treatments. He ran low-grade fevers off and on, so they lab tested everything looking for infection - except his leg wounds which continue to heal marvelously and cause virtually no pain (only during dressing changes every 2 days). Right now he is no longer complaining of "phantom" leg pain.
He also spent almost 2 hours sitting in his special chair again - the first time since Nov. 17. Surprisingly, John did not want to sit up and was quite anxious - probably a result of the over-extension of the previous weekend which caused such distress. He continues on the ventilator and it will probably be early next week before any attempt is made to begin weaning him off again. John had been switched to a different nutritional food through his tube and is tolerating that very well and getting stronger. This was a day with no setbacks.
When I arrived Friday morning I learned John did have pneumonia again, so he is now back on two IV antibiotics and increased suctioning which should take care of it. But the bright spot was that John was more alert and engaged in "conversation" with me. This means he moves his tongue and eyes vigorously and I try to interpret! Also, he wanted the TV news turned on and his glasses! This is the first time since surgery in Chandler and was exciting - it lasted about 8 minutes but made my morning! Now it is not unusual to see John trying to move his hands and fingers and wiggling his foot as well as turning his head. It is so exciting! He got lots of rest today and did not sit in the chair, but it felt like a good day.
As for me, I really appreciate the notes of encouragement about my own well-being that I receive. And I continue to enjoy reading your notes to John. I talk and/or text with all the children everyday. A friend took me to lunch on Thursday and another on Friday. These "outings" from the hospital room and the conversation were such a help. Dee Ann and Tom brought my parents to see John and we went out to dinner on Thursday. As many of you have mentioned, this is a very long and lonely road for me, but I try to focus on this day and not the immediate unknown future. I try to eat regular meals and sleeping at night has not been a problem. When I come home sometime between 9-10pm, I putter a bit with the mail and then go to bed - so exhausted that I fall asleep immediately. God has been good in providing the peace of mind I need to sleep. I know that John is going to beat this GBS monster. The excellent medical care, your prayers, God's faithfulness, and John's inner strength will make this happen.
Wednesday, November 20, 2013
Wednesday, November 20, 2013 10:00pm
END OF WEEK FOUR
Amy inspired us all with her writing on Monday night and I am so grateful for the light she can shed on this difficult situation. Her presence, like Elisa's and Paul's, always brightened the room for John and me as well as others.
Monday and Tuesday were rough days and nights for John. Backward steps in many ways and very discouraging - erratic blood pressures (high and low), low oxygen levels, fevers, trouble with feeding tubes just to name a few things. General summary by both primary doctors is that the Guillain-Barre is still active and running the show, not really in retreat yet. There are very small improvements, primarily in his mouth, including gagging and some weak coughing now. It is clear that the pace of the removal from the ventilator on Sunday and using just the tract was too swift. A more prudent speed and course of action has now been put in place. Eventually we will move forward daily, but for now it is still a rough roller-coaster ride.
As always, when he is not sleeping, John remains optimistic and eager for his therapy sessions. The family continues to be grateful for your prayers and the many, many notes John is receiving.
Amy inspired us all with her writing on Monday night and I am so grateful for the light she can shed on this difficult situation. Her presence, like Elisa's and Paul's, always brightened the room for John and me as well as others.
Monday and Tuesday were rough days and nights for John. Backward steps in many ways and very discouraging - erratic blood pressures (high and low), low oxygen levels, fevers, trouble with feeding tubes just to name a few things. General summary by both primary doctors is that the Guillain-Barre is still active and running the show, not really in retreat yet. There are very small improvements, primarily in his mouth, including gagging and some weak coughing now. It is clear that the pace of the removal from the ventilator on Sunday and using just the tract was too swift. A more prudent speed and course of action has now been put in place. Eventually we will move forward daily, but for now it is still a rough roller-coaster ride.
As always, when he is not sleeping, John remains optimistic and eager for his therapy sessions. The family continues to be grateful for your prayers and the many, many notes John is receiving.
Monday, November 18, 2013
To Keep On Breathing
I'm tired, I'm worn.
My heart is heavy
from the work it takes
to keep on breathing.
So begins the song, "Worn," by Tenth Avenue North, which came to mind as I left my Dad's hospital room tonight. I'll fly home to Texas tomorrow after spending the last 8 days here in Phoenix with my Mom and Dad. Those first lyrics seem especially fitting, as the good news of the last couple days is that my Dad spent over 20 hours breathing on his own, without the aid of the ventilator! This indicates returning strength and responsiveness in his lungs and is a critical step in his recovery. The not-so-good news was that some of those hours were too much at once so he ended up pretty exhausted by "the work it takes to keep on breathing." Ensuing conversations with his doctors and nurses have us moving forward with a more gradual and manageable plan for weaning him off the ventilator. This process of his body healing itself is bumpy and slow. So we'll all be pacing ourselves.
My soul feels crushed
by the weight of this world
You've been praying, calling, sending cards, and posting messages of encouragement because you know that this journey has been and will be hard. Not just for my Dad, but for all of us - especially my Mom. She's carrying a pretty crushing weight right now. Your continued support of her from near and far, and your ongoing prayers are so appreciated.
It's the chorus of the song, though, that spoke to me in a new way as I thought about my Dad's illness:
Let me see redemption win.
Let me know the struggle ends,
that you can mend a heart
that's frail and torn.
I wanna know a song can rise
from the ashes of a broken life,
and all that's dead inside can be reborn.
'Cause I'm worn.
As we wait, all of us together, for this struggle to end, for deadened nerves inside to be reborn, for a song to rise from the ashes of a broken life - we cling to the promise of redemption. We put our trust in the God who is continually redeeming every worn, weary, broken, devastated, desperate corner of his creation. God's working redemption. One nerve, one breath, at a time.
-Amy
Saturday, November 16, 2013
Saturday, November 16, 2013 4:00pm
A REAL BONUS AT SELECT
We are on the third floor of the hospital and looking out a window over the old front entrance, straight down 4th Avenue and clear across the city of Phoenix directly at the tall spire of Historic First Presbyterian! I even brought the binoculars for a better look. John can't see that yet, but I describe it all to him. What a blessing the Lord has provided - a real inspiration for us.
Life here in Select Specialty Hospital is turning out to be a good thing. From the first day yesterday John has been given a lot of attention by therapists and doctors and great care by his nurses and CNAs. They are efficient, quick to respond and friendly - obviously enjoying their work with one another. John did a good job at his PT/OT evaluation. The head of OT who had taken us on the tour and conducted basic intake info from us before arriving was very upbeat and happy with the routines she put him through - achieving a bit more than she expected. She has a lot of experience, including her mother who struggled for some time with GBS. All 3 doctors came by.
Biggest News - and scariest thought before hand: John was put into a special reclining chair and then taken off the ventilator to give it a try! He managed to maintain for 2 hours! This is the first step towards some freedom from the machine and working towards the goal of some speech eventually through the trach. We did get some hand/arm exercises in, but otherwise he has been exhausted and slept much of the day. Seems to have little pain which is a real blessing and keeps his blood pressure and heart rate in good numbers.
Thanks for continuing to read the blog and supporting us with your prayers.
We are on the third floor of the hospital and looking out a window over the old front entrance, straight down 4th Avenue and clear across the city of Phoenix directly at the tall spire of Historic First Presbyterian! I even brought the binoculars for a better look. John can't see that yet, but I describe it all to him. What a blessing the Lord has provided - a real inspiration for us.
Life here in Select Specialty Hospital is turning out to be a good thing. From the first day yesterday John has been given a lot of attention by therapists and doctors and great care by his nurses and CNAs. They are efficient, quick to respond and friendly - obviously enjoying their work with one another. John did a good job at his PT/OT evaluation. The head of OT who had taken us on the tour and conducted basic intake info from us before arriving was very upbeat and happy with the routines she put him through - achieving a bit more than she expected. She has a lot of experience, including her mother who struggled for some time with GBS. All 3 doctors came by.
Biggest News - and scariest thought before hand: John was put into a special reclining chair and then taken off the ventilator to give it a try! He managed to maintain for 2 hours! This is the first step towards some freedom from the machine and working towards the goal of some speech eventually through the trach. We did get some hand/arm exercises in, but otherwise he has been exhausted and slept much of the day. Seems to have little pain which is a real blessing and keeps his blood pressure and heart rate in good numbers.
Thanks for continuing to read the blog and supporting us with your prayers.
Friday, November 15, 2013
Friday, November 15, 2013 5:45am
A BRIEF UPDATE
John was transferred to the Select Specialty Hospital unit on the third floor of the original St. Joseph's Hospital. After waiting the entire day, the transfer took place around 5:30pm - not an optimum time nor executed in the best form, but safely. (The race through the halls is a story for another day!) We have found that each time John was moved it took place just before shift change and after the hours that most staff except the nursing staff was gone for the day. That provides for little welcome or thorough intake.
John slept throughout much of the day, whether because of the newer pain medication or simply the demands and symptoms of Guillain-Barre is uncertain. He is maintaining well on the ventilator. John did do a splendid job when the two physical therapists had him sitting on the bed - even holding his head up briefly! Our specific prayer need is for the nerves that have been (and may be continuing to be) ravaged by the GBS to begin to repair themselves and give John the opportunity to work actively towards a recovery, including a weaning from the ventilator.
John was transferred to the Select Specialty Hospital unit on the third floor of the original St. Joseph's Hospital. After waiting the entire day, the transfer took place around 5:30pm - not an optimum time nor executed in the best form, but safely. (The race through the halls is a story for another day!) We have found that each time John was moved it took place just before shift change and after the hours that most staff except the nursing staff was gone for the day. That provides for little welcome or thorough intake.
John slept throughout much of the day, whether because of the newer pain medication or simply the demands and symptoms of Guillain-Barre is uncertain. He is maintaining well on the ventilator. John did do a splendid job when the two physical therapists had him sitting on the bed - even holding his head up briefly! Our specific prayer need is for the nerves that have been (and may be continuing to be) ravaged by the GBS to begin to repair themselves and give John the opportunity to work actively towards a recovery, including a weaning from the ventilator.
Wednesday, November 13, 2013
Wednesday, November 13, 2013 9:45pm
CHANGES AHEAD
Tuesday turned out to be a good day for John. He was more alert and engaged. Fred Davis, a good friend, stayed with him in the morning while Amy went with me to a doctor's appointment. Upon our return he was moving his mouth some and making a bit of audible sound. He managed to sit on the side of the bed supported entirely by the physical therapists for a longer period of time - and bounced his right foot as it rested on the ground! Still little response or strength from his arms and neck/head.
The central IV line was removed - only one IV left to administer antibiotics.
We have been told repeatedly that there will be constant ups and downs for a long time. Today John seemed to have little energy after yesterday's work. He slept through the morning. However, in the afternoon the therapist really got him working and we saw glimmers of progress. He really seemed aware that this is work that he has to do - and the blood pressure did not go as high. In late afternoon his feeding tube was removed from his nose and a feeding port was inserted in his stomach. This will be safer and more effective for the weeks ahead.
But change is ahead - tomorrow John will be moved to Select Specialty Hospital, a step down in acute care. This is a separate hospital within St. Joseph's which will specialize in weaning people off the ventilator and still provide the less acute care that John needs. He will also receive daily PT and OT care. Please pray that this will be a smooth transition for him.
Tuesday turned out to be a good day for John. He was more alert and engaged. Fred Davis, a good friend, stayed with him in the morning while Amy went with me to a doctor's appointment. Upon our return he was moving his mouth some and making a bit of audible sound. He managed to sit on the side of the bed supported entirely by the physical therapists for a longer period of time - and bounced his right foot as it rested on the ground! Still little response or strength from his arms and neck/head.
The central IV line was removed - only one IV left to administer antibiotics.
We have been told repeatedly that there will be constant ups and downs for a long time. Today John seemed to have little energy after yesterday's work. He slept through the morning. However, in the afternoon the therapist really got him working and we saw glimmers of progress. He really seemed aware that this is work that he has to do - and the blood pressure did not go as high. In late afternoon his feeding tube was removed from his nose and a feeding port was inserted in his stomach. This will be safer and more effective for the weeks ahead.
But change is ahead - tomorrow John will be moved to Select Specialty Hospital, a step down in acute care. This is a separate hospital within St. Joseph's which will specialize in weaning people off the ventilator and still provide the less acute care that John needs. He will also receive daily PT and OT care. Please pray that this will be a smooth transition for him.
Tuesday, November 12, 2013
Tuesday, November 12, 2013 5:45am
A BIRTHDAY REPORT
John turned 70 on Sunday and although the party in the ICU was subdued, it was a celebration of John's life and the blessing he has been for so many people. We celebrated his gifts of humor and patience, his acceptance and encouragement of others, and his constant faith and abiding love of the Lord. As his family, we remembered and were grateful for the joy he brings to our lives. Our immediate family - Elisa & family, Paul, my parents, sisters, brothers, and nephews - visited John throughout the day and then gathered for supper and a "pumpkin pie birthday cake." Then we sung a raucous rendition of "Happy Birthday" which we recorded for John.
And from all of you - his family and friends - we were humbled by your cards and greetings. Over 150 birthday cards (not counting the get well notes) were hung up to decorate his room! It was just awesome for John to see and for those who passed by or provided his care for him. It gave them a glimpse of the "person" that is John inside that quiet body. John was unable to listen to or focus on many cards, but we will get a lot of joy from looking at them over and over in the weeks ahead.
Thank you! Thank you!
Physically, John is very, very weak. He continues to only move his head slightly and his fingers on command. He sleeps a great deal of the time. Even though we talk to him regularly, he gives little response to the conversation and just drifts off again. He does respond to the appropriate requests/commands as the doctors, nurses, and we check, so we know that his cognitive ability is still good. Although I worry, the doctors and nurses tell me it is natural that he sleeps because his brain and body are working so hard to heal and recover. It takes all of his energy. Yesterday the wounds were cleaned and checked - they continue to heal well. Once again the physical therapists sat him on the side of the bed a few minutes until the pain pushed the blood pressure too high. Waiting for the healing from the Guillian-Barre will be the long, slow rhythm of our days. Keep praying.
The Hoods set off for Utah early morning yesterday and arrived home safely. Paul returned to work and then home to Veronica and Dillon. Amy arrived at suppertime and will stay with me for a week. Please say a prayer for Joshua and the kids at home, but also for these lovely adult children and their families who continue to give me love and support as I stumble on this new path with the uncertain days. Each day I look to God for wisdom, strength and endurance.
John turned 70 on Sunday and although the party in the ICU was subdued, it was a celebration of John's life and the blessing he has been for so many people. We celebrated his gifts of humor and patience, his acceptance and encouragement of others, and his constant faith and abiding love of the Lord. As his family, we remembered and were grateful for the joy he brings to our lives. Our immediate family - Elisa & family, Paul, my parents, sisters, brothers, and nephews - visited John throughout the day and then gathered for supper and a "pumpkin pie birthday cake." Then we sung a raucous rendition of "Happy Birthday" which we recorded for John.
And from all of you - his family and friends - we were humbled by your cards and greetings. Over 150 birthday cards (not counting the get well notes) were hung up to decorate his room! It was just awesome for John to see and for those who passed by or provided his care for him. It gave them a glimpse of the "person" that is John inside that quiet body. John was unable to listen to or focus on many cards, but we will get a lot of joy from looking at them over and over in the weeks ahead.
Thank you! Thank you!
Physically, John is very, very weak. He continues to only move his head slightly and his fingers on command. He sleeps a great deal of the time. Even though we talk to him regularly, he gives little response to the conversation and just drifts off again. He does respond to the appropriate requests/commands as the doctors, nurses, and we check, so we know that his cognitive ability is still good. Although I worry, the doctors and nurses tell me it is natural that he sleeps because his brain and body are working so hard to heal and recover. It takes all of his energy. Yesterday the wounds were cleaned and checked - they continue to heal well. Once again the physical therapists sat him on the side of the bed a few minutes until the pain pushed the blood pressure too high. Waiting for the healing from the Guillian-Barre will be the long, slow rhythm of our days. Keep praying.
The Hoods set off for Utah early morning yesterday and arrived home safely. Paul returned to work and then home to Veronica and Dillon. Amy arrived at suppertime and will stay with me for a week. Please say a prayer for Joshua and the kids at home, but also for these lovely adult children and their families who continue to give me love and support as I stumble on this new path with the uncertain days. Each day I look to God for wisdom, strength and endurance.
Saturday, November 9, 2013
Saturday, November 9, 2013 10:00pm
ON THE EVE OF JOHN'S 70TH BIRTHDAY
Since my last post Friday morning, John has received the final two IVIG treatments through his central IV line. It can cause flu-like symptoms of aching pain and that seems to have been the case today. They have downgraded his pain medication, but the new RX seems to be working for him. He reports almost no pain from the amputation, but a lot of back pain - perhaps from lying down so long.
The acute care doctor did insert a tracheostomy yesterday afternoon with no problem. It has been a great improvement for John to be hooked to the ventilator this way and no tube down his throat. His vital signs continue to be good and he has stopped most IV medications. Although he cannot speak, he tries very hard to say "yes" with his lower lip when communicating. There is no control over his tongue or mouth. Moving almost any part of his body by himself was not possible yesterday, but today's tests by the neuro doctor and the physical therapist revealed some "firing" of nerve/muscle impulses which was encouraging, however tiny and slight! Because every case of Guillian-Barre is different and John's case seems to be quite unique (and compounded by the previous infections and amputation) it is very hard to predict the course of the illness.
Yesterday Stephen brought the kids to the hospital and we all had lunch out together. There is a family playroom and we enjoyed time there. Ava was able to visit her grandpa and talk to him - she was very brave in such a new environment.
Today was quiet for Paul, Elisa and me with John. We worked on birthday party preparations and Dee and Tom came up to help out. But the big event was the physical therapists getting John to sit on the edge of his bed! He was not able to help at all - not even his head - and these two women were amazing. The therapist really pushed him through a few exercises and we saw some movement in a his right foot, left leg, and hands. When his blood pressure went too high, it was time for lying down and a good long nap - for John! But the three of us were also exhausted from the tension of watching this "workout."
Enough for tonight - tomorrow is an important day. I think there are over 125 birthday cards decorating that room! And the balloons are coming! Thanks to everyone for the cards, but more importantly for the prayers and the love.
Since my last post Friday morning, John has received the final two IVIG treatments through his central IV line. It can cause flu-like symptoms of aching pain and that seems to have been the case today. They have downgraded his pain medication, but the new RX seems to be working for him. He reports almost no pain from the amputation, but a lot of back pain - perhaps from lying down so long.
The acute care doctor did insert a tracheostomy yesterday afternoon with no problem. It has been a great improvement for John to be hooked to the ventilator this way and no tube down his throat. His vital signs continue to be good and he has stopped most IV medications. Although he cannot speak, he tries very hard to say "yes" with his lower lip when communicating. There is no control over his tongue or mouth. Moving almost any part of his body by himself was not possible yesterday, but today's tests by the neuro doctor and the physical therapist revealed some "firing" of nerve/muscle impulses which was encouraging, however tiny and slight! Because every case of Guillian-Barre is different and John's case seems to be quite unique (and compounded by the previous infections and amputation) it is very hard to predict the course of the illness.
Yesterday Stephen brought the kids to the hospital and we all had lunch out together. There is a family playroom and we enjoyed time there. Ava was able to visit her grandpa and talk to him - she was very brave in such a new environment.
Today was quiet for Paul, Elisa and me with John. We worked on birthday party preparations and Dee and Tom came up to help out. But the big event was the physical therapists getting John to sit on the edge of his bed! He was not able to help at all - not even his head - and these two women were amazing. The therapist really pushed him through a few exercises and we saw some movement in a his right foot, left leg, and hands. When his blood pressure went too high, it was time for lying down and a good long nap - for John! But the three of us were also exhausted from the tension of watching this "workout."
Enough for tonight - tomorrow is an important day. I think there are over 125 birthday cards decorating that room! And the balloons are coming! Thanks to everyone for the cards, but more importantly for the prayers and the love.
Friday, November 8, 2013
Friday, November 8, 2013 9:30am
A REAL GAME PLAN
Word came late last evening - we have a diagnosis! John had a spinal tap late afternoon yesterday and Dr. Ortega called at 8:30pm with the preliminary results:
John has Guillain-Barre Syndrome (GBS).
This is a disorder in which the body's immune system attacks part of the peripheral nervous system. The exact cause of Guillain-Barre syndrome is unknown, but it is often preceded by an infectious illness and luckily, it is uncommon, affecting only 1-2 people per 100,000. There is no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects such as weakness, numbness or fatigue. For more information, check out this link.
John was started on IVIG treatment immediately last night and is receiving his second treatment today. There have been no side effects. His blood pressure remains on an even keel and he is now less sedated. He is unable to speak, but does work to communicate through squeezing our hands and moving his head.
He remains on the ventilator to assist with his breathing, but will be most likely have a tracheostomy sometime in the coming days.
This recovery process will be long and measured in small increments in the weeks and months ahead. He will need to recover nerve and muscle tone and strength before moving forward on the leg prosthesis.
The greetings and birthday cards are certainly filling our mailbox! Thanks to all of you for the outpouring of care and support. Thanks for the warmth of God's love we feel surrounding us through your prayers.
Word came late last evening - we have a diagnosis! John had a spinal tap late afternoon yesterday and Dr. Ortega called at 8:30pm with the preliminary results:
John has Guillain-Barre Syndrome (GBS).
This is a disorder in which the body's immune system attacks part of the peripheral nervous system. The exact cause of Guillain-Barre syndrome is unknown, but it is often preceded by an infectious illness and luckily, it is uncommon, affecting only 1-2 people per 100,000. There is no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects such as weakness, numbness or fatigue. For more information, check out this link.
John was started on IVIG treatment immediately last night and is receiving his second treatment today. There have been no side effects. His blood pressure remains on an even keel and he is now less sedated. He is unable to speak, but does work to communicate through squeezing our hands and moving his head.
He remains on the ventilator to assist with his breathing, but will be most likely have a tracheostomy sometime in the coming days.
This recovery process will be long and measured in small increments in the weeks and months ahead. He will need to recover nerve and muscle tone and strength before moving forward on the leg prosthesis.
The greetings and birthday cards are certainly filling our mailbox! Thanks to all of you for the outpouring of care and support. Thanks for the warmth of God's love we feel surrounding us through your prayers.
Thursday, November 7, 2013
Thursday, November 7, 2013 8:30am
ANOTHER DAY OF WAITING
Wednesday was mainly another day of rest for John. The nurses carefully watch and control meds in attempt to keep his blood pressure within desired limits. They needed to remain steady for 2 hours in order for John to have the necessary MRI - he succeeded by late afternoon and then maintained for over 6 hours. The MRI was done late at night and he tolerated it well. Now we are waiting for results. He does have a bit of pneumonia and a low fever, but has antibiotics for that.
The good news was his wounds are healing very well! The wound care team exclaimed how great they looked when the dressings were changed and the wound vac was applied to both sites.
We had a nice time while he was a wee bit awake when the four of us (Paul, Elisa, Stephen and I) connected with him in conversation. He answered by squeezing hands and even nodding his head! A few family members and a pastoral friend were able to say hello briefly.
We sure hope for some answers - or even some clues to this mystery - as we go through Thursday.
Wednesday was mainly another day of rest for John. The nurses carefully watch and control meds in attempt to keep his blood pressure within desired limits. They needed to remain steady for 2 hours in order for John to have the necessary MRI - he succeeded by late afternoon and then maintained for over 6 hours. The MRI was done late at night and he tolerated it well. Now we are waiting for results. He does have a bit of pneumonia and a low fever, but has antibiotics for that.
The good news was his wounds are healing very well! The wound care team exclaimed how great they looked when the dressings were changed and the wound vac was applied to both sites.
We had a nice time while he was a wee bit awake when the four of us (Paul, Elisa, Stephen and I) connected with him in conversation. He answered by squeezing hands and even nodding his head! A few family members and a pastoral friend were able to say hello briefly.
We sure hope for some answers - or even some clues to this mystery - as we go through Thursday.
Wednesday, November 6, 2013
Wednesday, November 6, 2013 6:45am
A DAY OF REST FOR JOHN
Tuesday was pretty much just a day of rest for John as he remains on the ventilator. Careful monitoring of his heart and blood pressure kept him on an even keel. The Critical Care Doctor's goal was "comfort and rest" to gather strength for more testing ahead as they search for that illusive "root cause". He feels John's body has been under a great amount of trauma and stress. John was able to take in high protein/high calorie liquid through his feeding tube and sustains it well. This is a critical piece to recovery.
Now Paul and I are off to see what today brings. We are so grateful for the minutes when he is under less sedation and we are able to communicate through his hands squeezing ours. The Hoods drove down from Utah and we will have Stephen and Elisa join us today.
Tuesday was pretty much just a day of rest for John as he remains on the ventilator. Careful monitoring of his heart and blood pressure kept him on an even keel. The Critical Care Doctor's goal was "comfort and rest" to gather strength for more testing ahead as they search for that illusive "root cause". He feels John's body has been under a great amount of trauma and stress. John was able to take in high protein/high calorie liquid through his feeding tube and sustains it well. This is a critical piece to recovery.
Now Paul and I are off to see what today brings. We are so grateful for the minutes when he is under less sedation and we are able to communicate through his hands squeezing ours. The Hoods drove down from Utah and we will have Stephen and Elisa join us today.
Tuesday, November 5, 2013
Monday, November 4, 2013 10:15pm
AN UP-AND-DOWN DAY FOR JOHN (actually posted 11/5/13 at 7:00am)
John had a stable night on Sunday and was resting when I joined Paul at the ICU. Through the morning they gradually reduced the amount of oxygen he was receiving and his own levels stayed steady where necessary. At 1:00 the intubation was removed and he simply had a nasal canula. All the vital signs looked good. He was still sedated a bit and unable to talk with his feeding tube in place, yet continued to respond to questions and commands.
After lunch they made an attempt to insert a "pik line" in his arm, but were not able. Then the wound team changed the dressings on his leg and hooked up the wound vac - at that point, John's blood pressure dropped drastically and he was in trouble again. He was put back on the ventilator and given critical care treatment immediately. A central line was inserted. He is now stable again and resting quietly. Finding the balance of the pain meds and other needs he has is quite difficult - all have side effects. Finding the root cause of all these problems still is illusive. He is continuing to fight, but I know he does not know what is happening.
Paul stays with him in ICU at night so I can try to sleep at home. Thanks for your prayers and concerns.
John had a stable night on Sunday and was resting when I joined Paul at the ICU. Through the morning they gradually reduced the amount of oxygen he was receiving and his own levels stayed steady where necessary. At 1:00 the intubation was removed and he simply had a nasal canula. All the vital signs looked good. He was still sedated a bit and unable to talk with his feeding tube in place, yet continued to respond to questions and commands.
After lunch they made an attempt to insert a "pik line" in his arm, but were not able. Then the wound team changed the dressings on his leg and hooked up the wound vac - at that point, John's blood pressure dropped drastically and he was in trouble again. He was put back on the ventilator and given critical care treatment immediately. A central line was inserted. He is now stable again and resting quietly. Finding the balance of the pain meds and other needs he has is quite difficult - all have side effects. Finding the root cause of all these problems still is illusive. He is continuing to fight, but I know he does not know what is happening.
Paul stays with him in ICU at night so I can try to sleep at home. Thanks for your prayers and concerns.
Monday, November 4, 2013
Monday, November 4, 2013 6:45am
NEED FOR MORE PRAYERS
Just a quick note before rushing to the hospital -- John's difficulty with swallowing increased to difficulty with breathing and advanced rapidly. When we arrived at rehab yesterday morning, John could not speak clearly, was on oxygen and could barely raise his arms off the bed. A CT scan and an MRI had ruled out a stroke and preparations were being made to transfer him to the Neuro/Telemetry Unit at St. Joseph's (across the walkway). While waiting for transport, at noon Elisa and I were standing with John when he had a seizure and people rushed in when she pulled the alarm. There was a run through the halls to the Neuro/Telemetry Unit. When we arrived there, John was in full distress and rushed into ICU with a team immediately putting him on a ventilator and heart monitors. We believe several days of failure to swallow allowed secretions to slowly fill his lungs. It was most likely an hypoxic seizure caused by a lack of oxygen to the brain. So far it looks like no neurologic damage and he is in stable condition.
My family rushed in to support and Paul arrived last night and stayed with John. Elisa is going home to her children and husband today. Please keep praying. Thanks.
Just a quick note before rushing to the hospital -- John's difficulty with swallowing increased to difficulty with breathing and advanced rapidly. When we arrived at rehab yesterday morning, John could not speak clearly, was on oxygen and could barely raise his arms off the bed. A CT scan and an MRI had ruled out a stroke and preparations were being made to transfer him to the Neuro/Telemetry Unit at St. Joseph's (across the walkway). While waiting for transport, at noon Elisa and I were standing with John when he had a seizure and people rushed in when she pulled the alarm. There was a run through the halls to the Neuro/Telemetry Unit. When we arrived there, John was in full distress and rushed into ICU with a team immediately putting him on a ventilator and heart monitors. We believe several days of failure to swallow allowed secretions to slowly fill his lungs. It was most likely an hypoxic seizure caused by a lack of oxygen to the brain. So far it looks like no neurologic damage and he is in stable condition.
My family rushed in to support and Paul arrived last night and stayed with John. Elisa is going home to her children and husband today. Please keep praying. Thanks.
Saturday, November 2, 2013
Saturday, November 2, 2013 10:00pm
On a Bit of a Roller Coaster
Friday was a good day for John. He worked really hard at both physical therapy and occupational therapy and was making progress. But it was hard work! A main task for occupational therapy was a real shower! That was a task, but John felt so wonderful! He was even able to shave himself - all this the first time since Oct. 21. Right after that the wound care team came and checked, cleaned and redressed the wounds. Both sites were started on the "wound vac" which really makes progress in the healing. The only bummer in the day was John's continuing difficulty with swallowing and coughing/choking at times throughout all the workouts. John was just exhausted and fell asleep early, so Elisa and I were home by 8 pm for the first time.
Today Elisa and I planned to go in around 10 am since the schedule is less intense on the weekend. However, John called at 7 and was in "a bit of trouble" after a bad night and wanted us right away. Turns out he could not swallow anything at all! Even a small ice chip would have him coughing it right back out and he had had no pain meds. It was a rough day - just can't go into all the details, but he had many tests and many were negative (praise God!) including his heart is doing well. But he is back on IV fluids because he is severely dehydrated and also on oxygen for the first time. Continuing severe anemia may be a real culprit in his increasing weakness. Later tonight he will have an MRI of his throat area and head - we'll look forward to results in the morning. These are crappy setbacks, but John will persevere as you well know. Just keep on praying.
Friday was a good day for John. He worked really hard at both physical therapy and occupational therapy and was making progress. But it was hard work! A main task for occupational therapy was a real shower! That was a task, but John felt so wonderful! He was even able to shave himself - all this the first time since Oct. 21. Right after that the wound care team came and checked, cleaned and redressed the wounds. Both sites were started on the "wound vac" which really makes progress in the healing. The only bummer in the day was John's continuing difficulty with swallowing and coughing/choking at times throughout all the workouts. John was just exhausted and fell asleep early, so Elisa and I were home by 8 pm for the first time.
Today Elisa and I planned to go in around 10 am since the schedule is less intense on the weekend. However, John called at 7 and was in "a bit of trouble" after a bad night and wanted us right away. Turns out he could not swallow anything at all! Even a small ice chip would have him coughing it right back out and he had had no pain meds. It was a rough day - just can't go into all the details, but he had many tests and many were negative (praise God!) including his heart is doing well. But he is back on IV fluids because he is severely dehydrated and also on oxygen for the first time. Continuing severe anemia may be a real culprit in his increasing weakness. Later tonight he will have an MRI of his throat area and head - we'll look forward to results in the morning. These are crappy setbacks, but John will persevere as you well know. Just keep on praying.
Subscribe to:
Posts (Atom)