Monday, March 31, 2014
Reduced Visitation
The family is endlessly grateful for the love that has been lavished on us. However, we respectfully request that friends refrain from visiting over the next week until Dad has a chance to renew his strength. This lull will also allow his caregivers to conserve their strength. It is surprising how exhausting it can be to just sit in a hospital room - so much information, so many emotions, and so little sleep! We look forward to visiting with you as soon as we are able to mentally track with normal conversation. Love to all!
Bradycardia
Becky's friend Lila asked her how Steve was doing... This was Becky's reply...
"Shaky, Lila. Really shaky. He just had another episode where his bp and heart rate dropped very low (pulse was about 30). It's called bradycardia. This is the 4th time it's happened in a one week timespan. The ENT that placed his tracheotomy will check on him. The night doctor thinks the trac might be aggravating a nerve connected somehow to his heart. Each time there is significant movement of his trac area, this has happened. (transferring hospitals, cleaning trac tube, trying to wean off ventilator...)"
Please pray for answers and solutions
"Shaky, Lila. Really shaky. He just had another episode where his bp and heart rate dropped very low (pulse was about 30). It's called bradycardia. This is the 4th time it's happened in a one week timespan. The ENT that placed his tracheotomy will check on him. The night doctor thinks the trac might be aggravating a nerve connected somehow to his heart. Each time there is significant movement of his trac area, this has happened. (transferring hospitals, cleaning trac tube, trying to wean off ventilator...)"
Please pray for answers and solutions
Sunday, March 30, 2014
Turning the corner? March 30
Dad seems to be responding well to the antibiotics. His WBC count went from 36 a few days ago in the ER to 19 this morning.
They resumed his peg tube feeding last night and plan to resume the rest of his medications today.
Tim was bedside last night and sent these texts:
"Just talked with Dad. His chin movements were greatly improved. Almost as strong as before. Clear yes and clear no. Said he didn't need to talk, not in pain and was able to rest. Also said he was aware and remembered what happened the last couple of days."
"Gave lots of yes movements when I told him that Mom and Becky were home playing grandma and aunt tonight but that their hearts were here with him. "
Becky has started doing cartwheels (unfortunate ones she called them) whenever we text good news. So...if I post later that we are in the ER getting a cast or stitches or a back brace for Becky, you will know that Dad is greatly improved! ;)
They resumed his peg tube feeding last night and plan to resume the rest of his medications today.
Tim was bedside last night and sent these texts:
"Just talked with Dad. His chin movements were greatly improved. Almost as strong as before. Clear yes and clear no. Said he didn't need to talk, not in pain and was able to rest. Also said he was aware and remembered what happened the last couple of days."
"Gave lots of yes movements when I told him that Mom and Becky were home playing grandma and aunt tonight but that their hearts were here with him. "
Becky has started doing cartwheels (unfortunate ones she called them) whenever we text good news. So...if I post later that we are in the ER getting a cast or stitches or a back brace for Becky, you will know that Dad is greatly improved! ;)
Saturday, March 29, 2014
Saturday night- March 29th
I don't know why I did this but I checked the blog earlier for an update. Duh. I'm the one who updates.
I had the pleasure of receiving a phone call from Nancy's brother, Dick, from Iowa. He was very appreciative of the blog. We are so pleased that this form of communication has made it easier for loved ones near and far to stay updated. Your love for Dad and the family means the world to us.
Dad has been sleeping most of the day. He doesn't have much to say. I can imagine that if we had bilateral pneumonia and a urinary tract infection that we would just want to be left alone too.
When we got here this afternoon his BP was switching frequently between very high and very low. It seems to have leveled out on the high side now. (Without any intervention) Tim had a chance to speak with the neurologist via phone and he said that high was better than low.
Tim and I are back on deck tonight. He just dropped our kids (including our 2-year-old Evelyn) at Nana's house to give Nana and Becky a dose of "Vitamin E" as we like to call her.
I had the pleasure of receiving a phone call from Nancy's brother, Dick, from Iowa. He was very appreciative of the blog. We are so pleased that this form of communication has made it easier for loved ones near and far to stay updated. Your love for Dad and the family means the world to us.
Dad has been sleeping most of the day. He doesn't have much to say. I can imagine that if we had bilateral pneumonia and a urinary tract infection that we would just want to be left alone too.
When we got here this afternoon his BP was switching frequently between very high and very low. It seems to have leveled out on the high side now. (Without any intervention) Tim had a chance to speak with the neurologist via phone and he said that high was better than low.
Tim and I are back on deck tonight. He just dropped our kids (including our 2-year-old Evelyn) at Nana's house to give Nana and Becky a dose of "Vitamin E" as we like to call her.
Blessings Overflowing
Mom only left the hospital yesterday from about 3-7pm. When she returned, I asked her if she got any rest at all. She said "Oh, about an hour" The amazing thing was, she was flying high. She said, "Steve, I have so many good things to tell you." While she stood bedside and told him all of the good news of the last few hours, he repeatedly mouthed "yes" by moving his jaw. She said "Steve, such wonderful people love us!" and he heartily agreed.
Mom wrote the following:
Some blessings of today, March 28. 2014:
~Steve had a restful and uneventful day, recovering from yesterday's surgery. He received excellent care from the staff at Christ ICU.
~We found out his room at Drake At Christ in the LTAC is being held for him while he is in ICU.
~New neighbor Mike let Charlie out because we spent the night at the hospital.
~Dinner arrived from Dan and Karen Rusche
~Dave Meyerrose called and offered help. Right then we were trying to figure out what to do with Charlie next. Decided to put him at New Beginnings boarding where he loves to go. However he didn't have the vaccination needed according to the kennel. Dave M picked him up and took him to the vet. Turned out Charlie had what he needed after all, Dave played with him and brought him home.
~We took him to the kennel tonight. Owner Karen Abell, who has a long friendship and business relationship with Steve offered to come pick up Charlie at a moment's notice if we get in a tight spot again.
~Sandy Banta offered to grocery shop.
~Meanwhile, Dan Larison, Dave Giegler and Fred Banta finished off transferring storage left from our move from one unit, closing it down. This project was begun last night by Rick and Connie Thomas, Vicki and Gary Mertz, Dick Becker and Dave.
~Lee and Karen Mason came to the hospital again, as did Sandy Banta and Mike Tolle.
~Becky, Tim and Flora were at the hospital again today, keeping watch over Steve.
~So thankful to God for delivering Steve from last night's crisis.
Saturday Morning-March 29
Dad had his ear cleaned out by Dr Karakis yesterday and at that time he decided that he should also have bilateral tubes placed due to the presence of fluid (but no infection). He returned this morning to place the tubes. He performed this at the bedside to reduce the risk of transport to the OR.
Text from mom:
"Dr Lanka said he needs recert to go back to LTAC. He should be in ICU over weekend. Neuro consult will stop by today. Dad slept most of night and since tube insertion sleeping again with pain meds."
Text from mom:
"Dr Lanka said he needs recert to go back to LTAC. He should be in ICU over weekend. Neuro consult will stop by today. Dad slept most of night and since tube insertion sleeping again with pain meds."
Friday, March 28, 2014
Tour of ICUs March 28
Sitting bedside with Dad at his 3rd ICU (St E, UC, Christ) Thinking about offering our services to JCAHO.
Mom and Becky stayed the night last night and had a restless night. We had a changing of the guards this afternoon and they are now getting some much needed rest.
Walking into the hospital today, Tim said "I wonder what today will hold? At this point anything is possible. I wouldn't be surprised if a herd of wild deer went tearing through the waiting room...or we disturbed a nest of baby raccoons!"
Dad is resting and seems less interested in communicating. His BP was low last night, high this morning, but is just right now. Goldilocks would approve. He has been placed on triple antibiotics (they added the third this morning)
The ENT will be back this afternoon to clean out dad's good ear.
Mom and Becky stayed the night last night and had a restless night. We had a changing of the guards this afternoon and they are now getting some much needed rest.
Walking into the hospital today, Tim said "I wonder what today will hold? At this point anything is possible. I wouldn't be surprised if a herd of wild deer went tearing through the waiting room...or we disturbed a nest of baby raccoons!"
Dad is resting and seems less interested in communicating. His BP was low last night, high this morning, but is just right now. Goldilocks would approve. He has been placed on triple antibiotics (they added the third this morning)
The ENT will be back this afternoon to clean out dad's good ear.
Wee hours of the morning- March 28th
Dad is out of surgery and settled into SICU. The surgeon said it went well. There were a few small blood vessels inside the trach that were bleeding. (Which is why the bleeding wouldn't stop by applying pressure) He stitched them up and cleaned him up. He said that none of the blood went into his lungs. We were able to visit with him and he answered "yes and no" questions for Tim with his jaw.
His blood pressure is low so they are inserting an A-line to monitor his pressures and oxygen levels.
Mom and Becky are staying the night.
Oh, and remember how one of our goals yesterday was to have Dad's good ear looked at because he was complaining that it felt clogged? This ENT was the Dr he told us to call. We were even able to show Dr Manders his name in the book where we write down letters as Dad motions with his jaw. Mom had left a message with his office. He said he will look at his ear tomorrow when he visits.
A big thank you to our friend, Susan Miller RN, for the comfort in the ER and for checking on us while we were in the waiting room. We appreciate your kindness.
His blood pressure is low so they are inserting an A-line to monitor his pressures and oxygen levels.
Mom and Becky are staying the night.
Oh, and remember how one of our goals yesterday was to have Dad's good ear looked at because he was complaining that it felt clogged? This ENT was the Dr he told us to call. We were even able to show Dr Manders his name in the book where we write down letters as Dad motions with his jaw. Mom had left a message with his office. He said he will look at his ear tomorrow when he visits.
A big thank you to our friend, Susan Miller RN, for the comfort in the ER and for checking on us while we were in the waiting room. We appreciate your kindness.
Surgery
Dad is in surgery to stop his trach from bleeding. Due to his episodes of bradycardia the ENT decided that the OR was the most controlled way to handle this situation. Surprisingly, the ENT on call Dr is the same Dr that performed Dad's plasmacytoma surgery in 2010 and has treated him ever since, as recently as this past January. He will go to SICU following surgery.
Becky is here now and we are all together in the waiting room. Thank you 8 South for providing boxed lunches and ice cream for us. We were in desperate need of food.
Becky is here now and we are all together in the waiting room. Thank you 8 South for providing boxed lunches and ice cream for us. We were in desperate need of food.
In ER
We are in Christ's ER and heading to Christ ICU soon. The ENT dr is here and attempting to stop the bleeding from Dad's trach. His WBC count is very very high . They have started double broad spectrum antibiotics.
Thursday, March 27, 2014
PRAY
Friends and Family, please pray. He is having significant bleeding. Working on transfer to Christ ICU.
Clarification of directions
Lee Llambi, a co-worker from Dad's Litton days, is here to visit after a bit of directional confusion. Please note, Dad is at the Drake Unit at CHRIST hospital. He has been moved to room 3065- directly across from the nurse's station. He has the "good room" (Mad About You reference) ;)
Thursday March 27 (with 25/26 recap)
It has been a roller coaster these past few days. At one point Dad asked "When do we get off this ride?" We aren't exactly sure what he was referring to, but it is definitely a question in all our minds.
Tuesday was a bit of a gauntlet for Mom - every time she turned around she was getting a new piece of information that needed to be looked into further. We are so incredibly grateful to my sister, JJ, who spent the day with Mom - feeding her, providing emotional support, and being another set of ears. Love in action. Thank you!
Tim and I arrived late Tuesday night and spent the night deciphering Dad's needs and generally making a nuisance of ourselves to the nursing staff. At one point I felt like asking the obviously irritated nurse, "Isn't there anybody in your life that you love enough to become a nuisance for?" Tim and I made a pinky promise that night that we would be willing to be a nuisance for each other. (Although my mom told me today that pinky promises are only valid for two years.)
The details of Tuesday are foggy at this point, but basically while he was being retuned to his bed following a CT scan, his heart rate dropped to 20. He received a dose of atropine and was quickly restored to a normal rate. However, this incident prompted questions as to why this occurred? The current theory is that he had a vagal response due to his trach being manipulated. He had a cardiac consult following this episode and there were no new findings. The recommendation is to always have atropine at bedside and with transport. We all but taped the atropine to his chest last night before he was moved to Drake (at Christ).
The transfer went well. The staff has been HIGHLY responsive to Dad's needs. We are educating anyone that comes into the room on Dad's mental clarity and how he makes his needs known. The call light system is still a question, but we have a lead on a sensitive clicker that could go under his chin. The question is, does it work with the Christ system.
This morning, the pulmonologist noticed that Dad was essentially breathing on his own with minimal ventilator assist. They decided to give him a chance to fully see what he was capable of doing. 16 minutes into the wean process his heart rate dropped into the 20s again. At this point they reestablished ventilation and it quickly returned to normal. At the time of incident, the RT was providing trach care, so once again there is question of a vagal response. The plan for today is to decrease any movement. Depending on the frequency of these episodes there might be further talk of a pacemaker. (The RT-Bob, who has been an RT for 40 years and has a wonderful bedside manner) is in the room now and says that he has been restored to his original O2 settings following this mornings episode. (They had him pretty bumped up after the incident but have weaned him back down to pre-incident levels)
The nurses are currently reapplying his hand splints and stopping to admire his photos and ask questions about Dad. I like these people.
The big goals for today are:
Moving Dad closer to nurse's station
Getting a call light system that works
Figuring out what is happening with his left ear (his good ear) He is complaining that it is clogged. :/
This JUST happened-
Doug Collins, MD, a friend from Lifespring, "just happened" to run into Tim in the lobby and hear about what is going on...and thought to himself I need to speak with a certain Dr about this...then he "just happened" to stand directly next to that certain Dr in the lunch line...who said "You need to get Dr. Deaton (a physical medical and rehab Dr) to consult on this case." He went to look for Dr Deaton and ran directly into her and she absolutely agreed to be involved in this case. In Dr Collin's words, "The Lord had His hand on these encounters."
Tuesday was a bit of a gauntlet for Mom - every time she turned around she was getting a new piece of information that needed to be looked into further. We are so incredibly grateful to my sister, JJ, who spent the day with Mom - feeding her, providing emotional support, and being another set of ears. Love in action. Thank you!
Tim and I arrived late Tuesday night and spent the night deciphering Dad's needs and generally making a nuisance of ourselves to the nursing staff. At one point I felt like asking the obviously irritated nurse, "Isn't there anybody in your life that you love enough to become a nuisance for?" Tim and I made a pinky promise that night that we would be willing to be a nuisance for each other. (Although my mom told me today that pinky promises are only valid for two years.)
The details of Tuesday are foggy at this point, but basically while he was being retuned to his bed following a CT scan, his heart rate dropped to 20. He received a dose of atropine and was quickly restored to a normal rate. However, this incident prompted questions as to why this occurred? The current theory is that he had a vagal response due to his trach being manipulated. He had a cardiac consult following this episode and there were no new findings. The recommendation is to always have atropine at bedside and with transport. We all but taped the atropine to his chest last night before he was moved to Drake (at Christ).
The transfer went well. The staff has been HIGHLY responsive to Dad's needs. We are educating anyone that comes into the room on Dad's mental clarity and how he makes his needs known. The call light system is still a question, but we have a lead on a sensitive clicker that could go under his chin. The question is, does it work with the Christ system.
This morning, the pulmonologist noticed that Dad was essentially breathing on his own with minimal ventilator assist. They decided to give him a chance to fully see what he was capable of doing. 16 minutes into the wean process his heart rate dropped into the 20s again. At this point they reestablished ventilation and it quickly returned to normal. At the time of incident, the RT was providing trach care, so once again there is question of a vagal response. The plan for today is to decrease any movement. Depending on the frequency of these episodes there might be further talk of a pacemaker. (The RT-Bob, who has been an RT for 40 years and has a wonderful bedside manner) is in the room now and says that he has been restored to his original O2 settings following this mornings episode. (They had him pretty bumped up after the incident but have weaned him back down to pre-incident levels)
The nurses are currently reapplying his hand splints and stopping to admire his photos and ask questions about Dad. I like these people.
The big goals for today are:
Moving Dad closer to nurse's station
Getting a call light system that works
Figuring out what is happening with his left ear (his good ear) He is complaining that it is clogged. :/
This JUST happened-
Doug Collins, MD, a friend from Lifespring, "just happened" to run into Tim in the lobby and hear about what is going on...and thought to himself I need to speak with a certain Dr about this...then he "just happened" to stand directly next to that certain Dr in the lunch line...who said "You need to get Dr. Deaton (a physical medical and rehab Dr) to consult on this case." He went to look for Dr Deaton and ran directly into her and she absolutely agreed to be involved in this case. In Dr Collin's words, "The Lord had His hand on these encounters."
Wednesday, March 26, 2014
Moved to Drake Unit at Christ Hospital - March 26
Oh goodness, do I have a story to tell... I don't have enough energy to properly do it justice tonight but I will give you the end of the story - Tim and I did NOT get taken away in handcuffs by the 5 security guards that showed up at Dad's room last night to remove us from the unit (@UC) ;)
Dad's insurance was unexpectedly approved for LTAC transfer today. They moved him around 6pm. He is now settled into room 3075. EVERY staff member we have encountered so far has been kind and knowledgeable. They have been eager to know how to communicate with him.
Tim will be staying the night.
Dad's insurance was unexpectedly approved for LTAC transfer today. They moved him around 6pm. He is now settled into room 3075. EVERY staff member we have encountered so far has been kind and knowledgeable. They have been eager to know how to communicate with him.
Monday, March 24, 2014
Hurry up and wait- Monday March 24th
We were feeling hopeful and confident about the decision to move Dad to the LTAC unit of Drake at Christ Hospital today.
I'll give you three guesses as to what stalled Dad's transfer to LTAC today, but I think that if you know anything about healthcare you will only need one...insurance :(
Insurance is trying to say that he has to stay at UC because he hasn't been on a vent for 21 days (It's been 14 days)
From a text from Mom today...
" The assessing nurse from little Drake at Christ will assess him via chart, etc. and then doctors will call Anthem and try hard to convince them to let him go to LTAC. There's a chance they won't approve it even after 21 days and he would go to a skilled nursing facility.
Best case is anthem agreeing to use LTAC and we don't have to wait the full 21. Doctors can call multiple times.
Update: Christ hospital Drake liaison came this pm and was reassuring. Says we may have to follow the 21day stay thing but she believes they can persuade anthem that dad must have the LTAC level of care."
(Insert rant about Insurance companies dictating care in spite of what the medical professionals believe is the best course for the patient here)
It is hard to move forward in the coping process when you don't know when and where that will happen and plans keep getting turned sideways. We look forward to the day that Dad moves on to the next stage of rehab and he and mom can make a little "home away from home" as they work towards his recovery.
In the meantime, they will monitor him closely for any signs of infection.
Thank you to Pat Russ and Dave and Linda Gilbert for helping to take care of Charlie these past few weeks. Your pictures and stories of Charlie going to work, or book club, or playing "catch the laser light" with Tink and enjoying biscuits in the evening, have been a welcome heart-lifter to Mom. ;)
I'll give you three guesses as to what stalled Dad's transfer to LTAC today, but I think that if you know anything about healthcare you will only need one...insurance :(
Insurance is trying to say that he has to stay at UC because he hasn't been on a vent for 21 days (It's been 14 days)
From a text from Mom today...
" The assessing nurse from little Drake at Christ will assess him via chart, etc. and then doctors will call Anthem and try hard to convince them to let him go to LTAC. There's a chance they won't approve it even after 21 days and he would go to a skilled nursing facility.
Best case is anthem agreeing to use LTAC and we don't have to wait the full 21. Doctors can call multiple times.
Update: Christ hospital Drake liaison came this pm and was reassuring. Says we may have to follow the 21day stay thing but she believes they can persuade anthem that dad must have the LTAC level of care."
(Insert rant about Insurance companies dictating care in spite of what the medical professionals believe is the best course for the patient here)
It is hard to move forward in the coping process when you don't know when and where that will happen and plans keep getting turned sideways. We look forward to the day that Dad moves on to the next stage of rehab and he and mom can make a little "home away from home" as they work towards his recovery.
In the meantime, they will monitor him closely for any signs of infection.
Thank you to Pat Russ and Dave and Linda Gilbert for helping to take care of Charlie these past few weeks. Your pictures and stories of Charlie going to work, or book club, or playing "catch the laser light" with Tink and enjoying biscuits in the evening, have been a welcome heart-lifter to Mom. ;)
Sunday, March 23, 2014
Saturday March 22 and Sunday March 23
Forgive me for being a day behind on the blog but since every day feels like 2 in this alternate reality, I am right on schedule ;)
Saturday was our first mostly normal day - not filled with any big changes for better or for worse.
When the herd of rounding doctors came around in the morning, they invited me and Tim to participate in the discussion. (I think they could tell that by the way we were standing in the doorway we were gonna jump in anyway) But listening to their report we were relieved to hear a head-to-toe assessment that didn't involve any red flags. They even showed us, with much amazement on their part, his chest X-ray and said "This is the best we could hope for for any patient that has been on a vent as long as he has!"
Dad indicated to me and Tim that he had something to say. While Tim called out letters, I wrote down the following message to Tim:
"I am so glad and proud of the way you have stepped as the patriarch of our family"
Through tears, Tim was able to assure him that he had learned from the best and was only carrying that job for a short while until Dad was able to resume his duties. It was such a gift to be able to hear from him in this way.
Emma, his 2nd oldest grandchild, was able to visit with Poppa Choo Choo in the afternoon.
Tim and I visited the 3rd facility and were able to give Mom a thumbs up. If the insurance hoops get jumped through, transfer is still scheduled for Monday.
Kristy, my sister, stopped by to visit in the evening and sweetly brought 3 key rings and helped Mom organize all of her new keys. She also offered her mad computer research skills and will be keeping a file on support groups and other positive stories for when we are ready to hear them.
One rather new development is the way Dad feels like he is not getting enough of a breath on the ventilator. The respiratory therapists checked his settings many times and always assured him that his oxygen levels are good. They explained to him that this anxiety is probably caused by the fact that there has been a noticeable increase in him initiating spontaneous breaths on his own and that is probably an uncomfortable sensation. His muscles are remembering how to work again and it feels like he can't get a deep enough breath. This is a good thing.
Tim stayed with Dad through the night and said that Dad slept pretty well. He woke up at 2:30 and wondered what time it was and then went back to sleep.
At 6 am he woke up and asked for Mom to come. She skipped church and came to the hospital. He finds so much comfort just having her nearby.
During the night, Tim attempted to channel his Dad's engineer skills and jimmy rig the call light so that his dad could use it. He bought different supplies, and even the nurses got in on the action, but after 4 different approaches he still couldn't quite get it to work.
The doctors stopped by again this morning and offered no new information except the good news that Multiple myeloma has officially been ruled out through blood work. The past couple of days there was a very small but real concern that that might be a player in this disease process. Fortunately, it has been taken off the table.
I returned to Fort Wayne yesterday and Tim is driving back now. We will try to keep meaty blog posts coming your way as we glean info from our eyes on the scene. ;)
Saturday was our first mostly normal day - not filled with any big changes for better or for worse.
When the herd of rounding doctors came around in the morning, they invited me and Tim to participate in the discussion. (I think they could tell that by the way we were standing in the doorway we were gonna jump in anyway) But listening to their report we were relieved to hear a head-to-toe assessment that didn't involve any red flags. They even showed us, with much amazement on their part, his chest X-ray and said "This is the best we could hope for for any patient that has been on a vent as long as he has!"
Dad indicated to me and Tim that he had something to say. While Tim called out letters, I wrote down the following message to Tim:
"I am so glad and proud of the way you have stepped as the patriarch of our family"
Through tears, Tim was able to assure him that he had learned from the best and was only carrying that job for a short while until Dad was able to resume his duties. It was such a gift to be able to hear from him in this way.
Emma, his 2nd oldest grandchild, was able to visit with Poppa Choo Choo in the afternoon.
Tim and I visited the 3rd facility and were able to give Mom a thumbs up. If the insurance hoops get jumped through, transfer is still scheduled for Monday.
Kristy, my sister, stopped by to visit in the evening and sweetly brought 3 key rings and helped Mom organize all of her new keys. She also offered her mad computer research skills and will be keeping a file on support groups and other positive stories for when we are ready to hear them.
One rather new development is the way Dad feels like he is not getting enough of a breath on the ventilator. The respiratory therapists checked his settings many times and always assured him that his oxygen levels are good. They explained to him that this anxiety is probably caused by the fact that there has been a noticeable increase in him initiating spontaneous breaths on his own and that is probably an uncomfortable sensation. His muscles are remembering how to work again and it feels like he can't get a deep enough breath. This is a good thing.
Tim stayed with Dad through the night and said that Dad slept pretty well. He woke up at 2:30 and wondered what time it was and then went back to sleep.
At 6 am he woke up and asked for Mom to come. She skipped church and came to the hospital. He finds so much comfort just having her nearby.
During the night, Tim attempted to channel his Dad's engineer skills and jimmy rig the call light so that his dad could use it. He bought different supplies, and even the nurses got in on the action, but after 4 different approaches he still couldn't quite get it to work.
The doctors stopped by again this morning and offered no new information except the good news that Multiple myeloma has officially been ruled out through blood work. The past couple of days there was a very small but real concern that that might be a player in this disease process. Fortunately, it has been taken off the table.
I returned to Fort Wayne yesterday and Tim is driving back now. We will try to keep meaty blog posts coming your way as we glean info from our eyes on the scene. ;)
Saturday, March 22, 2014
Friday March 21st
Yesterday began "full steam" and ended "out of steam." (I think Dad would appreciate the train references.) The morning started with clarifying certain aspects of his care - labs, treatments, and plans. The social worker visited and said that insurance approval for his move to the next facility wouldn't be available until Monday. This proved to be an unexpected blessing, since we now had the day to perform the EMG test and to give his trach longer to heal. It also allowed us to make a new discovery...
While sitting inside the doorway of his room, I happened to overhear a conversation in the nurse's station between a Lead Respiratory Therapist/Nurse Manager and a Resident. The resident remarked on "the patient in that room with Guillain-barre" and the RT replied, "He would be a perfect candidate for NAVA." I continued to eavesdrop some more until finally I just inserted myself into the conversation and asked if they could stop by after rounds so I could ask some questions. They very graciously agreed.
For some background, NAVA is short for Neurally Adjusted Ventilator Assist. It is a cutting edge biofeedback system for helping wean patients off ventilators. Mom and I first became aware of this when touring LTACH facilities the other day. One facility had it, the other didn't. It is so new that not many studies have been performed on it and there is not much literature available about it.
So when the RT came into the room, we asked more questions about NAVA and it turns out that we were talking to one of the few authors who has been published regarding NAVA use. It really is "the latest and the greatest" (The question now is does he need "latest and greatest" or "tried and true"). The resident was able to print a copy of the paper for us.
At this point, we decided that it would be worth our while to check out a third facility that might be able to offer a mix of comfort and technology - they have NAVA.
At this point Patrick (my sister Kristy's husband and Steve's fellow gear head) entered the scene. He was a much-needed comfort at this time. We were wearing thin and Patrick jumped right in to help us decipher some of Dad's needs. We then asked him if he wouldn't mind touring the new facility with Mom while I stayed to meet with Drs. Poor Patrick, he came to visit and the 2 Mrs Parsleys put him right to work. Next time, I bet he brings a change of clothes and a sack lunch, just in case.
Patrick and Mom toured the 3rd facility and came back saying many great things about it. It is possible that we might change direction and go with this new option. NAVA being the key factor. Transfer is tentatively scheduled for Monday although since we are starting over with insurance approval, I'm not sure if that will cause a delay.
Following Dad's 5th and final plasmapheresis treatment they removed the central line in his neck. Slowly but surely he is ditching some of his extra lines.
The EMG seemed to confirm what has been hinted at all along. This is going to be a "long process." They spoke of recovery in terms of 9-12 months but anticipate him to be functioning at the end of that time (possibly with braces or cane, but we will take it!).
So, we still have the same hope - but it seems it has become a hope that will need to stretch out over time. We can do that.
(Also, thank you Cheryl Becker for brightening Mom's week with a pot of pansies by her front door. You know her love language - flowers!)
While sitting inside the doorway of his room, I happened to overhear a conversation in the nurse's station between a Lead Respiratory Therapist/Nurse Manager and a Resident. The resident remarked on "the patient in that room with Guillain-barre" and the RT replied, "He would be a perfect candidate for NAVA." I continued to eavesdrop some more until finally I just inserted myself into the conversation and asked if they could stop by after rounds so I could ask some questions. They very graciously agreed.
For some background, NAVA is short for Neurally Adjusted Ventilator Assist. It is a cutting edge biofeedback system for helping wean patients off ventilators. Mom and I first became aware of this when touring LTACH facilities the other day. One facility had it, the other didn't. It is so new that not many studies have been performed on it and there is not much literature available about it.
So when the RT came into the room, we asked more questions about NAVA and it turns out that we were talking to one of the few authors who has been published regarding NAVA use. It really is "the latest and the greatest" (The question now is does he need "latest and greatest" or "tried and true"). The resident was able to print a copy of the paper for us.
At this point, we decided that it would be worth our while to check out a third facility that might be able to offer a mix of comfort and technology - they have NAVA.
At this point Patrick (my sister Kristy's husband and Steve's fellow gear head) entered the scene. He was a much-needed comfort at this time. We were wearing thin and Patrick jumped right in to help us decipher some of Dad's needs. We then asked him if he wouldn't mind touring the new facility with Mom while I stayed to meet with Drs. Poor Patrick, he came to visit and the 2 Mrs Parsleys put him right to work. Next time, I bet he brings a change of clothes and a sack lunch, just in case.
Patrick and Mom toured the 3rd facility and came back saying many great things about it. It is possible that we might change direction and go with this new option. NAVA being the key factor. Transfer is tentatively scheduled for Monday although since we are starting over with insurance approval, I'm not sure if that will cause a delay.
Following Dad's 5th and final plasmapheresis treatment they removed the central line in his neck. Slowly but surely he is ditching some of his extra lines.
The EMG seemed to confirm what has been hinted at all along. This is going to be a "long process." They spoke of recovery in terms of 9-12 months but anticipate him to be functioning at the end of that time (possibly with braces or cane, but we will take it!).
So, we still have the same hope - but it seems it has become a hope that will need to stretch out over time. We can do that.
(Also, thank you Cheryl Becker for brightening Mom's week with a pot of pansies by her front door. You know her love language - flowers!)
Lamentations 3: 22-23
22 The steadfast love of the Lord never ceases;
his mercies never come to an end;
23 they are new every morning;
great is your faithfulness.
his mercies never come to an end;
23 they are new every morning;
great is your faithfulness.
Friday, March 21, 2014
Friday March 21
Today was one conversation after another- poor Mom walked into the room and the social worker needed her to sign papers, my parents were there to visit, I was waiting to debrief with her about all the conversations I had just had with Drs, and Dad was motioning that he had things to tell her too!
I'm just gonna put this day to bed and start fresh in the morning. I think we can all sleep well knowing that Tim is back in town and sleeping near his dad's bed to protect him from the Battle-ax! ;)
I'm just gonna put this day to bed and start fresh in the morning. I think we can all sleep well knowing that Tim is back in town and sleeping near his dad's bed to protect him from the Battle-ax! ;)
BATTLEAXNTNU
(Guest author Karen - Flora's mom)
When Lee and I visited Steve today he was in the middle of a plasmapheresis treatment and was sound asleep because of the Benadryl they give along with it. Flora had already been there for hours but he hadn't realized it. When the treatment was complete and Steve started to rally, Flora leaned over and said, "Good morning, Dad. My mom and dad are here to see you." Immediately Steve started moving his jaw and Flora asked him, "Do you want to talk?" He indicated yes! We all assumed he wanted to talk to Lee.
We started the alphabet deciphering method and when he spelled BA I guessed he was going for BAsketball (March Madness) - when he added a T making it BAT I thought "baseball??" But we continued and when we got BATTLEAX Flora asked him, "Are you calling my dad a name?" "No" "Are you calling ME a name?" "No" "Oh dear, are you talking about Nancy??" "No"
We continued and when we got to BATTLEAXNTNU I was still thinking some sporting event at a college named NTNU - I asked him if he was using abbreviations again - "Yes" - "Will you spell it all out please?" He spelled NIGHT and then we caught on! His night nurse was a battle ax!!! We all laughed and laughed.
He hadn't wanted to talk to Lee at all - he had just been waiting for the chance to report that awful nurse. Flora assured him she would see to it that he never has that nurse again to which he gave an energetic YES signal. The laughter felt good but mostly we loved that in spite of his limitations he still manages to be well spoken.
When Lee and I visited Steve today he was in the middle of a plasmapheresis treatment and was sound asleep because of the Benadryl they give along with it. Flora had already been there for hours but he hadn't realized it. When the treatment was complete and Steve started to rally, Flora leaned over and said, "Good morning, Dad. My mom and dad are here to see you." Immediately Steve started moving his jaw and Flora asked him, "Do you want to talk?" He indicated yes! We all assumed he wanted to talk to Lee.
We started the alphabet deciphering method and when he spelled BA I guessed he was going for BAsketball (March Madness) - when he added a T making it BAT I thought "baseball??" But we continued and when we got BATTLEAX Flora asked him, "Are you calling my dad a name?" "No" "Are you calling ME a name?" "No" "Oh dear, are you talking about Nancy??" "No"
We continued and when we got to BATTLEAXNTNU I was still thinking some sporting event at a college named NTNU - I asked him if he was using abbreviations again - "Yes" - "Will you spell it all out please?" He spelled NIGHT and then we caught on! His night nurse was a battle ax!!! We all laughed and laughed.
He hadn't wanted to talk to Lee at all - he had just been waiting for the chance to report that awful nurse. Flora assured him she would see to it that he never has that nurse again to which he gave an energetic YES signal. The laughter felt good but mostly we loved that in spite of his limitations he still manages to be well spoken.
Thursday, March 20, 2014
Mr. Romancer
Dad has been very "verbal" today.
When he has something to say he moves his jaw side to side. Mom then asks him "Is the first letter A-F? G-L? M-R? S-Z?" When she gets to the collection of letters that he needs, he moves his jaw side to side. She then goes letter by letter until he signals with his jaw which letter he wants. In this way he was able to tell us this morning-
D-r-y (then we guessed mouth and were able to swab his mouth)
R-a-d-i (wanted the radio turned off)
W-i-p (wipe face)
F-e-e-l c-h-o (feel like he is choking, needed suctioned)
And, grab your tissues...
I L-O-V-E N-A-N-C-Y
(He even made his nurses cry with that last one)
When he has something to say he moves his jaw side to side. Mom then asks him "Is the first letter A-F? G-L? M-R? S-Z?" When she gets to the collection of letters that he needs, he moves his jaw side to side. She then goes letter by letter until he signals with his jaw which letter he wants. In this way he was able to tell us this morning-
D-r-y (then we guessed mouth and were able to swab his mouth)
R-a-d-i (wanted the radio turned off)
W-i-p (wipe face)
F-e-e-l c-h-o (feel like he is choking, needed suctioned)
And, grab your tissues...
I L-O-V-E N-A-N-C-Y
(He even made his nurses cry with that last one)
A very hopeful article
Thank you, JJ, for finding this article. Mom LOVED IT!
http://www.mdjunction.com/forums/guillain-barre-syndrome-discussions/introductions-personal-stories/10789328-my-insights-on-recovery-14-months-after-gbsmiller-fisher
http://www.mdjunction.com/forums/guillain-barre-syndrome-discussions/introductions-personal-stories/10789328-my-insights-on-recovery-14-months-after-gbsmiller-fisher
Wednesday, March 19, 2014
Wednesday-March 19th
Today was a day full of shadows and sunshine.
Dad had his 4th plasmapheresis today and appeared to handle it well. This was my (Flora) first glimpse of him in a few days and it was a bit disconcerting to see him lying in bed so still - until he gave one of the staff members a good solid "no" by turning his head! He is still feeling the effects of yesterday's anesthesia.
Mom is amazing. I was moved to tears seeing her tender care of him. Not only did she sweetly fill him in on the latest happenings, she performed range of motion on his arms and alerted the nurse to needed care. Plus, she spent the morning working on their taxes. Can you say "Woman of noble character"?!?
Dad will complete his plasmapheresis treatments on Friday. After that, he will need to be transferred to a lower level of care called a long term acute care hospital-LTACH for short. Yesterday, they gave mom a list of 4 possible places and told her to make the decision. You can imagine how overwhelming this task appeared.
We decided that of the 4 choices there were really only 2 contenders and so we decided to visit them both today. Our prayer was that the choice would be clear.
The first place was a bit of a shock- confusing, large, dreary and very institutional. I think we both fought the urge to run. Talking to the staff was reassuring-we could tell that they really knew their patients but afterwards I couldn't help but remark on their surprising lack of eyebrow grooming!! The whole place just felt "unplucked" We left there quite deflated but decided to dig deep and check out the second place.
While wondering aloud about "What to do about Charlie?" (the dog) and "Who could we call to let Charlie out?" Mom received a text from Sue Geigler "Would it be ok if Dave went over to the condo to paint?" A prayer answered before we even asked. This gave us renewed energy to tackle the next hospital-knowing that our God cares about even the smallest of needs.
The second place was a welcome change- smaller, more homey, and lots of responsive staff with great eyebrows!! ;) The staff spoke with awe of the transformations that they have seen in their patients. We were also impressed by how they spoke of knowing the patient's family members by name and welcoming them into the care. The director, a kind smiley well dressed woman, was on her way out for the day, but when she was informed we were there with questions, came back inside, took us on a tour of the unit, answered all of our questions, and walked us back to the lobby. We left there HOPING that he could get in- a far cry from our earlier feelings of hardly being able to keep ourselves from fleeing.
Afterwards, we headed back to the condo. There we were greeted by Dave Geigler and a freshly painted hallway. Thank you, Dave. Dad will return the favor soon :)
After that, dinner arrived - hot and homemade! Lasagna, salad, garlic bread and apple pie- brought by Werner and Linda Gondosch. It was wonderful and just what we needed!
While they were still here dropping off food, a neighbor came by to introduce herself and brought a breakfast casserole!!
So much provision in such a short amount of time left us both teary and thankful. Mom said "I'm just so grateful to be here in this place" To be able to say that after such a trying day says it all. Thank you all for providing such tangible love. Your kindness is making an otherwise shadowy time full of sunshine.
Dad had his 4th plasmapheresis today and appeared to handle it well. This was my (Flora) first glimpse of him in a few days and it was a bit disconcerting to see him lying in bed so still - until he gave one of the staff members a good solid "no" by turning his head! He is still feeling the effects of yesterday's anesthesia.
Mom is amazing. I was moved to tears seeing her tender care of him. Not only did she sweetly fill him in on the latest happenings, she performed range of motion on his arms and alerted the nurse to needed care. Plus, she spent the morning working on their taxes. Can you say "Woman of noble character"?!?
Dad will complete his plasmapheresis treatments on Friday. After that, he will need to be transferred to a lower level of care called a long term acute care hospital-LTACH for short. Yesterday, they gave mom a list of 4 possible places and told her to make the decision. You can imagine how overwhelming this task appeared.
We decided that of the 4 choices there were really only 2 contenders and so we decided to visit them both today. Our prayer was that the choice would be clear.
The first place was a bit of a shock- confusing, large, dreary and very institutional. I think we both fought the urge to run. Talking to the staff was reassuring-we could tell that they really knew their patients but afterwards I couldn't help but remark on their surprising lack of eyebrow grooming!! The whole place just felt "unplucked" We left there quite deflated but decided to dig deep and check out the second place.
While wondering aloud about "What to do about Charlie?" (the dog) and "Who could we call to let Charlie out?" Mom received a text from Sue Geigler "Would it be ok if Dave went over to the condo to paint?" A prayer answered before we even asked. This gave us renewed energy to tackle the next hospital-knowing that our God cares about even the smallest of needs.
The second place was a welcome change- smaller, more homey, and lots of responsive staff with great eyebrows!! ;) The staff spoke with awe of the transformations that they have seen in their patients. We were also impressed by how they spoke of knowing the patient's family members by name and welcoming them into the care. The director, a kind smiley well dressed woman, was on her way out for the day, but when she was informed we were there with questions, came back inside, took us on a tour of the unit, answered all of our questions, and walked us back to the lobby. We left there HOPING that he could get in- a far cry from our earlier feelings of hardly being able to keep ourselves from fleeing.
Afterwards, we headed back to the condo. There we were greeted by Dave Geigler and a freshly painted hallway. Thank you, Dave. Dad will return the favor soon :)
After that, dinner arrived - hot and homemade! Lasagna, salad, garlic bread and apple pie- brought by Werner and Linda Gondosch. It was wonderful and just what we needed!
While they were still here dropping off food, a neighbor came by to introduce herself and brought a breakfast casserole!!
So much provision in such a short amount of time left us both teary and thankful. Mom said "I'm just so grateful to be here in this place" To be able to say that after such a trying day says it all. Thank you all for providing such tangible love. Your kindness is making an otherwise shadowy time full of sunshine.
Tuesday, March 18, 2014
Tuesday March 18th
Today was a day full of information and procedures (new trach and peg tube).
Mom (Nancy) wrote today's update-
Surgeries went well. Looks so much better with tubes gone from mouth and shave under nurse Judy's beauty regimen. He got his first kiss in 10 days! (Not from Judy but from wifey). Nutrition will resume tomorrow through stomach peg.
Social worker described next level of care as long term acute care hospital where he will be weaned off the vent to breathe on his own, range of motion, speech therapy and eating possibly.
We need to choose a place for him to go for this care and he may go as early as Monday.
After this next place there will be another where he gets many hours of pt each day. He needs to be functional enough to benefit from it though.
Thank you all for checking in and please leave a note on the blog if you can.
So amazed by the river of God's provision through so many loving friends and family.
Thank you, JJ Taylor and Janet Larison for waiting with me through surgery today and to Sue Giegler for getting Charlie to the groomer so he makes a better housemate.
Mom (Nancy) wrote today's update-
Surgeries went well. Looks so much better with tubes gone from mouth and shave under nurse Judy's beauty regimen. He got his first kiss in 10 days! (Not from Judy but from wifey). Nutrition will resume tomorrow through stomach peg.
Social worker described next level of care as long term acute care hospital where he will be weaned off the vent to breathe on his own, range of motion, speech therapy and eating possibly.
We need to choose a place for him to go for this care and he may go as early as Monday.
After this next place there will be another where he gets many hours of pt each day. He needs to be functional enough to benefit from it though.
Thank you all for checking in and please leave a note on the blog if you can.
So amazed by the river of God's provision through so many loving friends and family.
Thank you, JJ Taylor and Janet Larison for waiting with me through surgery today and to Sue Giegler for getting Charlie to the groomer so he makes a better housemate.
Monday, March 17, 2014
Roll Call
We are interested to see who all is following along with us on this blog. Please sign your name in the comment section below. We are so glad to have your support! Also, if you want to email me pics of you and Steve together I (think I) can add to the blog. I will at least try! Florasuern@aol.com
Monday March 17th
This just in from the text grapevine...
Dad got to enjoy some hang time with Denny Zahler last night and will be visited by John Russell tonight. Two very dear friends who have known dad close to 30 years.
His 3rd plasmapheresis went well. These treatments will continue every other day.
Tomorrow, Dad is tentatively scheduled to receive his trach around 2:30pm. This may change though, as they are wanting to place a more permanent (but reversible) feeding tube at the same time.
Dad got to enjoy some hang time with Denny Zahler last night and will be visited by John Russell tonight. Two very dear friends who have known dad close to 30 years.
His 3rd plasmapheresis went well. These treatments will continue every other day.
Tomorrow, Dad is tentatively scheduled to receive his trach around 2:30pm. This may change though, as they are wanting to place a more permanent (but reversible) feeding tube at the same time.
March 17th @ 2am
I just spoke with his night nurse, Jennifer. She said "Usually when I walk into the room he moves his jaw to let me know he hears me but tonight he is actually sleeping" It must be the sweet hymns that Chris Taylor sang to him that lulled him to sleep. Thank you, Chris.
She did say that he opened his eyes on his own in the evening. ;)
He will have his 3rd plasmapheresis treatment today.
She did say that he opened his eyes on his own in the evening. ;)
He will have his 3rd plasmapheresis treatment today.
Sunday, March 16, 2014
Sunday March 16th
(I've gleaned this update from texts from Becky, our eyes on the scene, so forgive me if our imperfect grapevine results in some corrections later)
Dad says he slept well in the night.
Today, Dad had the first of a series of bronchoscopes to clean out his lungs. They will do this every few days until he is strong enough to cough on his own. They cleared plugs from his right lung and will culture for infection. He is sedated during the procedure.
"Looking at possibly doing a trach on Tuesday or Thursday. Dr says "sooner the better just because it does need to be done" It will free up dad's jaw more.
Direct quote from Becky "He can move his eyes some and head some. Dr says he's showing stronger movements this morning."
Last night, dad expressed concern about how he could call the nurse if he needed her. Because he is intubated and unable to move, they were unable to come up with an alternate system, but the nurse assured him that she would check on him frequently, and he was relieved. Becky sent this text today- "Nurse Molly created a call button for dad to use with his chin. She was up late last night. Said "It was all I could think about!" It's a gray soft button the size of a fist and placed on/under dad's chin when we aren't here. Still trying to figure out where to place it and how to attach it"
Becky received a wonderful care package from her co-workers yesterday. Thank you for bringing renewed energy to her! Your kindness is appreciated by the whole family!
To friends and family that are just hearing about Dad's condition in the last 24 hours- our sincerest apologies. We were trying to triage our efforts starting with the basics of Airway, Breathing, Circulation...then we moved onto Diagnosis and Energy (as in -trying to find an ounce of energy!) and have finally arrived at Friends. And somehow in there we also dealt with a full move, children, and phones that wouldn't receive phone calls! So glad you are here now and praying with us through his recovery.
Dad says he slept well in the night.
Today, Dad had the first of a series of bronchoscopes to clean out his lungs. They will do this every few days until he is strong enough to cough on his own. They cleared plugs from his right lung and will culture for infection. He is sedated during the procedure.
"Looking at possibly doing a trach on Tuesday or Thursday. Dr says "sooner the better just because it does need to be done" It will free up dad's jaw more.
Direct quote from Becky "He can move his eyes some and head some. Dr says he's showing stronger movements this morning."
Last night, dad expressed concern about how he could call the nurse if he needed her. Because he is intubated and unable to move, they were unable to come up with an alternate system, but the nurse assured him that she would check on him frequently, and he was relieved. Becky sent this text today- "Nurse Molly created a call button for dad to use with his chin. She was up late last night. Said "It was all I could think about!" It's a gray soft button the size of a fist and placed on/under dad's chin when we aren't here. Still trying to figure out where to place it and how to attach it"
Becky received a wonderful care package from her co-workers yesterday. Thank you for bringing renewed energy to her! Your kindness is appreciated by the whole family!
To friends and family that are just hearing about Dad's condition in the last 24 hours- our sincerest apologies. We were trying to triage our efforts starting with the basics of Airway, Breathing, Circulation...then we moved onto Diagnosis and Energy (as in -trying to find an ounce of energy!) and have finally arrived at Friends. And somehow in there we also dealt with a full move, children, and phones that wouldn't receive phone calls! So glad you are here now and praying with us through his recovery.
Saturday, March 15, 2014
Saturday March 15th
Dad, using the A-B-C/eyebrow lift system, was able to tell mom "Use the alphabet tool, standardize the staff use" She said that he abbreviated "standardize" which is a neat sign that "he is still as efficient as ever" Once a systems engineer- always a systems engineer!
Dad received his 2nd plasmapheresis treatment today and handled it well.
Increased eye and tongue movement noted along with his growing ability to shake his head side to side a bit more to indicate "no"
There is a growing concern for pneumonia but they are following his chest xrays and vital signs closely. They are "crossing their fingers" but "won't be surprised if he does get it"
Dad received his 2nd plasmapheresis treatment today and handled it well.
Increased eye and tongue movement noted along with his growing ability to shake his head side to side a bit more to indicate "no"
There is a growing concern for pneumonia but they are following his chest xrays and vital signs closely. They are "crossing their fingers" but "won't be surprised if he does get it"
Friday March 14th
Interventional Radiology came to his room to place a central line in his neck to begin plasmaphoresis. While being turned, he became extubated and had to be reintubated. Scary stuff.
Yesterday, they allowed him the opportunity to initiate breathing on his own-which he was able to do for a short time, but quickly became stressed and his vitals went up. They returned him to assisted ventilations.
Plasmapheresis was started in the afternoon and by all outward signs (blood pressure and face movement) he handled it well. He was still and calm.
Return of eye movement was noticed by family and the Dr.
(Tim and I returned to Fort Wayne. Alex and the kids came to Kentucky and Alex has now taken over the "Honey Do" Condo List.)
Around 1 am I called for an update and his nurse said that he had a bath, had his hair washed, and was sleeping peacefully.
Yesterday, they allowed him the opportunity to initiate breathing on his own-which he was able to do for a short time, but quickly became stressed and his vitals went up. They returned him to assisted ventilations.
Plasmapheresis was started in the afternoon and by all outward signs (blood pressure and face movement) he handled it well. He was still and calm.
Return of eye movement was noticed by family and the Dr.
(Tim and I returned to Fort Wayne. Alex and the kids came to Kentucky and Alex has now taken over the "Honey Do" Condo List.)
Around 1 am I called for an update and his nurse said that he had a bath, had his hair washed, and was sleeping peacefully.
Thursday March 13th
The staff developed another system for communicating Dad's needs. We recite the alphabet one letter at a time and when we reach the letter he wants, he raises his eyebrow. In this way, he was able to communicate that the straps were hurting his face and that he wanted a more pressurized setting on the vent- it felt too shallow for him.
For the first time, his vision was not double! Unfortunately, he still could not open his eyes on his own.
Dad received his 4th dose of IVIG. Due to the fact that minimal progress has been seen with this therapy, Dr Ferioli began to discuss changing treatment plans and beginning plasmapheresis. She was able to communicate this plan to Dad, and he acknowledged that he understood via his eyebrow. Thank you God for eyebrows!
They have decided to keep him awake during the day and promote sleep at night. They want to give him every opportunity to express his needs and participate in his plan of care.
For the first time, his vision was not double! Unfortunately, he still could not open his eyes on his own.
Dad received his 4th dose of IVIG. Due to the fact that minimal progress has been seen with this therapy, Dr Ferioli began to discuss changing treatment plans and beginning plasmapheresis. She was able to communicate this plan to Dad, and he acknowledged that he understood via his eyebrow. Thank you God for eyebrows!
They have decided to keep him awake during the day and promote sleep at night. They want to give him every opportunity to express his needs and participate in his plan of care.
The beginning...
Hard to believe that this whole crazy life altering syndrome only presented itself one week ago! So much has happened this week.In this post, I (Flora) will attempt to catch everyone up to speed on events to this point and then we will update daily as he continues to improve. We look forward to the day that Dad can read this blog on his own and marvel, along with us, at all of the ways provision came at just the right moment. I will try to record the good, bad, and the ugly so that Dad already has an outline ready when he decides to write his book.
Friday March 7th- Mom and Dad sign closing papers on their new condo and complete the sale of their Highland Ave house.
Saturday March 8th- Before going to bed, Dad notices a bit of double vision. Attributing it to his glasses, he took them off and went to bed. In the night, he got the "Steve, you are snoring!" elbow from mom and got up. He realized that in addition to the double vision, he now also had right hand weakness. Thinking that he was experiencing a minor stroke, they were able to wake up Tim (in town to help with Moving day on Monday) and head off to St Elizabeth South ER.
Sunday March 9th- Frustrated that he didn't arrive in time to receive clot busting drugs- TPA (THANKFULLY!) we were now in wait and see mode. CT's and MRI's came back negative and the Drs were unable to find the supposed clot. And still the weakness progressed- now moving to both arms- causing confusion about a bilateral stroke. Becky quickly arrived at the hospital from Columbus.
Monday March 10th- When his eye and mouth began to droop, his speech began to slur, and he lost the ability to move his legs- Dr's keyed into the fact that he had had GI upset for the week prior and began to lean towards a Guillain- Barre Syndrome diagnosis. A lumbar puncture was performed (showed high normal proteins) and he was transfered to ICU in anticipation of future airway management (ventilator). At this point, Dad was in constant pain in his arms due to the alteration in nerve sensation. He failed a swallow eval so they placed an NG tube for medication administration. He also received the first of 5 planned doses of IVIG- high dose immunoglubulins that they were hopeful would stop the progression and prevent nerve damage.
Tim and Becky rallied the troops and completed the move from house to condo as planned. They were rockstars! Of course, we couldn't help but rib dad about getting out of moving boxes. ;)
Monday March 10th evening/overnight- Rather quickly, Dad lost his gag reflex, ability to cough, and general ability to transfer air. He was intubated around 8pm. He was fully aware of the situation and was able to tell me that he was ready for intubation because he was tired and felt like he was choking. For the rest of Monday night and Tuesday, he was pretty heavily sedated. They placed a PICC line for his IV medications and blood draws.
Tuesday March 11th- Today they identified his GBS as a Miller-Fisher variant. Only about 1 in 100,000 people get GBS and only 5% of those patients get this variant. We had high hopes that the IVIG therapy would bring improvement. He received his 2nd dose. The plan from all 3 Dr's was "Stay the course". While happy with his care, we began to catch whiffs that they didn't see this condition much at this hospital. Due to the general weakness and intubation, Dad was only able to communicate through shaking his head no and blinking for yes. We played many games of 20 questions "Are you in pain?" "Do you want me to move your legs?" etc and he was still able to direct his care.
Wednesday March 12th- We had a chance to speak with a high level neurologist at University of Cincinnati- Dr Dawn Kleindorfer. Incidentally, she was the one who had trained the neurologist that was caring for him at St E's, Dr John Webb. Her advice was that he very definitely needed to be transferred to a NEURO ICU at UC. She confirmed that the treatment might initially look the same, but that they were much better equipped to prevent any possible complications and address any that might arise.
Tim and I were sobered at the mountain that we would have to climb- getting it cleared with his drs, insurance approval, logistics of transport, finding a receiving Dr at UC, and even just hoping that they might have a bed available on the unit. We asked many for prayer and were reminded that "God owns all the beds at a thousand hospitals" and within a few hours all obstacles were cleared. The Drs came in early to speak with us, agreed with our request, handled the details and insurance issues with guidance from Dr Kleindorfer, and a patient was just getting moved out of the NEURO unit- we only had to wait for the bed to be cleaned. ;)
Dad was transfered to University Hospital ICU around 6pm. When we arrived, he was already settled in and they had a note on the door saying "Pt alert. Can speak using eyebrows" At this point, Dad was only able to communicate using his right eyebrow- but they quickly developed a system- 2 eyebrow lifts means yes and 1 eyebrow lift means no. He was able to answer all of their questions and they were impressed by his cognitive awareness.
Thursday March 13th- When we arrived at the hospital, there were many people attending to him and addressing many different aspects of his care- the Resp Therapists switched him to a heated humidified vent, an Ultrasound tech scanned his legs for blood clots (just to check), they transfered him to an automatic turn bed to protect his skin and prevent pneumonia and also added percussion to keep his lungs clear from gunk, Physical Therapy came in to consult on splints and foot drop boots, and through it all his nurse made sure that everyone spoke to him and informed him what they were doing. He indicated his understanding through his eyebrow and they also watched his vitals for any changes that could indicate stress or pain.
As his family we wanted to make sure that they knew just how special their patient was - and that although he looks like "the patient in room 17"- he is really much much more.
Tim placed a sign over his bed saying:
My name is STEVE
~Husband to Nancy
~Father to Tim and Becky
~Grampa to 6 cute kids
~Retired Material Handling Engineer
~Lover of model trains
~Friend to many
Becky brought in many pictures and made a collage to remind all staff that this is our precious family member.
Through all of the medical drama, many many family members, Lakeside friends and life long friends assisted with helping with the move, taking care of Charlie, providing meals, taking care of our kids so that we were free to be at the hospital and prayer support. Your love and care have been, in Mom Parsley's words, "A river of God's love that has carried us along" Many more thank you's to be said but for now I'm going to complete this chapter and jump to daily updates.
Friday March 7th- Mom and Dad sign closing papers on their new condo and complete the sale of their Highland Ave house.
Saturday March 8th- Before going to bed, Dad notices a bit of double vision. Attributing it to his glasses, he took them off and went to bed. In the night, he got the "Steve, you are snoring!" elbow from mom and got up. He realized that in addition to the double vision, he now also had right hand weakness. Thinking that he was experiencing a minor stroke, they were able to wake up Tim (in town to help with Moving day on Monday) and head off to St Elizabeth South ER.
Sunday March 9th- Frustrated that he didn't arrive in time to receive clot busting drugs- TPA (THANKFULLY!) we were now in wait and see mode. CT's and MRI's came back negative and the Drs were unable to find the supposed clot. And still the weakness progressed- now moving to both arms- causing confusion about a bilateral stroke. Becky quickly arrived at the hospital from Columbus.
Monday March 10th- When his eye and mouth began to droop, his speech began to slur, and he lost the ability to move his legs- Dr's keyed into the fact that he had had GI upset for the week prior and began to lean towards a Guillain- Barre Syndrome diagnosis. A lumbar puncture was performed (showed high normal proteins) and he was transfered to ICU in anticipation of future airway management (ventilator). At this point, Dad was in constant pain in his arms due to the alteration in nerve sensation. He failed a swallow eval so they placed an NG tube for medication administration. He also received the first of 5 planned doses of IVIG- high dose immunoglubulins that they were hopeful would stop the progression and prevent nerve damage.
Tim and Becky rallied the troops and completed the move from house to condo as planned. They were rockstars! Of course, we couldn't help but rib dad about getting out of moving boxes. ;)
Monday March 10th evening/overnight- Rather quickly, Dad lost his gag reflex, ability to cough, and general ability to transfer air. He was intubated around 8pm. He was fully aware of the situation and was able to tell me that he was ready for intubation because he was tired and felt like he was choking. For the rest of Monday night and Tuesday, he was pretty heavily sedated. They placed a PICC line for his IV medications and blood draws.
Tuesday March 11th- Today they identified his GBS as a Miller-Fisher variant. Only about 1 in 100,000 people get GBS and only 5% of those patients get this variant. We had high hopes that the IVIG therapy would bring improvement. He received his 2nd dose. The plan from all 3 Dr's was "Stay the course". While happy with his care, we began to catch whiffs that they didn't see this condition much at this hospital. Due to the general weakness and intubation, Dad was only able to communicate through shaking his head no and blinking for yes. We played many games of 20 questions "Are you in pain?" "Do you want me to move your legs?" etc and he was still able to direct his care.
Wednesday March 12th- We had a chance to speak with a high level neurologist at University of Cincinnati- Dr Dawn Kleindorfer. Incidentally, she was the one who had trained the neurologist that was caring for him at St E's, Dr John Webb. Her advice was that he very definitely needed to be transferred to a NEURO ICU at UC. She confirmed that the treatment might initially look the same, but that they were much better equipped to prevent any possible complications and address any that might arise.
Tim and I were sobered at the mountain that we would have to climb- getting it cleared with his drs, insurance approval, logistics of transport, finding a receiving Dr at UC, and even just hoping that they might have a bed available on the unit. We asked many for prayer and were reminded that "God owns all the beds at a thousand hospitals" and within a few hours all obstacles were cleared. The Drs came in early to speak with us, agreed with our request, handled the details and insurance issues with guidance from Dr Kleindorfer, and a patient was just getting moved out of the NEURO unit- we only had to wait for the bed to be cleaned. ;)
Dad was transfered to University Hospital ICU around 6pm. When we arrived, he was already settled in and they had a note on the door saying "Pt alert. Can speak using eyebrows" At this point, Dad was only able to communicate using his right eyebrow- but they quickly developed a system- 2 eyebrow lifts means yes and 1 eyebrow lift means no. He was able to answer all of their questions and they were impressed by his cognitive awareness.
Thursday March 13th- When we arrived at the hospital, there were many people attending to him and addressing many different aspects of his care- the Resp Therapists switched him to a heated humidified vent, an Ultrasound tech scanned his legs for blood clots (just to check), they transfered him to an automatic turn bed to protect his skin and prevent pneumonia and also added percussion to keep his lungs clear from gunk, Physical Therapy came in to consult on splints and foot drop boots, and through it all his nurse made sure that everyone spoke to him and informed him what they were doing. He indicated his understanding through his eyebrow and they also watched his vitals for any changes that could indicate stress or pain.
As his family we wanted to make sure that they knew just how special their patient was - and that although he looks like "the patient in room 17"- he is really much much more.
Tim placed a sign over his bed saying:
My name is STEVE
~Husband to Nancy
~Father to Tim and Becky
~Grampa to 6 cute kids
~Retired Material Handling Engineer
~Lover of model trains
~Friend to many
Becky brought in many pictures and made a collage to remind all staff that this is our precious family member.
Through all of the medical drama, many many family members, Lakeside friends and life long friends assisted with helping with the move, taking care of Charlie, providing meals, taking care of our kids so that we were free to be at the hospital and prayer support. Your love and care have been, in Mom Parsley's words, "A river of God's love that has carried us along" Many more thank you's to be said but for now I'm going to complete this chapter and jump to daily updates.
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