The pulmonologist, Dr. Young, and the neurologist, Dr. Nadella, both came to visit Steve after dinner tonight (dinner was tenderloin, mashed potatoes, peas/carrots, with sugar free chocolate pudding, a roll and fresh, unsweetened tea). Brian Landrum came to visit which was fun.
Both doctors are pleased with Steve. Dr. Young wants to see Steve moved to a regular room. They are doing daily evaluations to see if he can be moved out of ICU. Steve asked Dr. Nadella: "Since I went down so fast, and now I am improving at a steady pace, can I expect the rate of improvement to continue to be steady, or should I expect a plateau or slowing before another improvement?" Dr. Nadella said that Steve will continue to improve at the same rate. But with Steve's diabetes the overall recovery may take a while; it may still be years before all of the tingling goes away or the weaknesses. So my next post may be from my iPad, sitting in a regular hospital room, getting ready to sleep on a chair/bed.
Steve was made to sit up for about 5 minutes today. Steve said that he has lost a lot of strength in his lower back so he kind of hunched over. But he did put his feet on the floor. He thinks that all the physical activity he got today has helped the restlessness he was feeling. After the 5 minutes, he started feeling dizzy, but the neurologist confirmed that the dizziness was normal. He's been on his back for 7 days.
I spent quite some time adjusting Steve's CPAP machine straps, so hopefully he will sleep better tonight.
There have been so many cards and emails and texts. I got a text this afternoon, "Praying for Steve!" but I didn't recognize the number. So I replied, "Thank you! I don't know whose number this is but thank you for the prayers!"
I got: "Your pastor!"
"Oops."
"Put me in your phone book!"
"Done."
Monday, January 31, 2011
Day 8, Start of the day
Steve had his third plasmapheresis treatment yesterday afternoon, at about 5pm. He said it took almost 2 hours, since the line is slow. They are not sure if the line is slow because of clots or because Steve pushes the needle against the wall of the vein when he moves his head. Steve has complained for two days of feeling "antsy" and they have given him sedatives. He wants to move his legs. Hopefully the therapy/rehabilitation will help. The therapists hadn't been to see Steve in a few days, so the doctor rewrote orders for them to come.
Terri was home for the weekend and was a huge encourager for Steve and me both. Steve asked Terri to get a piece of balsa wood from his plane-making stash and fix him a "nose scratcher".
The nurses allowed him to keep it.
I had a momentary panic when the nurse at the morning visit yesterday said that they were going to move Steve to a regular room on Monday. Steve cannot sit up, walk unassisted, or lift his head off the pillow. The nurse said that someone would have to stay with Steve 24/7 in the regular room since he could still have respiratory distress and it might take a few minutes for a floor nurse to get to him. But Dr. Young came right in and said no. Dr. Young wants Steve to have more "trunkal strength" before he is moved. Dr. Bajawa and the on-call hemotologist over the weekend both think that Steve will be moved soon. Praying for Steve to regain muscle strength quickly. His platelet count, dangerously low at 13,000 a week ago, is now up to 130,000. Praising God for the increase!
I found a GBS newsletter/support web-site. http://gbs-cidp.org/newsletters/pdfs/GBSMedNL0910web.pdf
On pages 2 and 3, there was an equation that tried to predict if a person was going to be able to walk unaided in 6 months. With Steve's age, the fact that he didn't have any diarrhea and where I think he will be in a week (which will be the two week marker of the onset of his symptoms) , his "number" is going to be a 3 or a 4. Right now he is bed-ridden. But if this graph can be believed, he should be walking unassisted by the first of July.
Steve always seems to have a smile for me, and I have fed him during the last couple of visits. I stopped by the church yesterday, just for a few minutes, to see familiar faces, people who were happy to see me, to apologize to friends for missed messages, to re-connect. It was both wonderful and heart-wrenching. I know I don't want to burden others. This recovery is going to take months, not days, and I am finding it difficult to ask for help. People have their own needs. Part of my anxiety is that I have NO CLUE what to expect. Two months in a regular room? Two days in a room and twenty-one days in rehab then to our home? Three months in ICU? The doctors continue to be vague, not to be unhelpful, but because it all depends on Steve. God help us.
Speaking of God: When God declares Himself as I AM, you cannot stand in His presence.
We have to fill out forms for short term disability, I need to contact our tax guy about how to estimate taxes for that, go by the cleaners, and put out the recycling. Terri helped me with the three big things I needed to do over the weekend: hang the curtains, put the Christmas boxes in the attic, and wash/vacuum my car. Thanks daughter!
Monday, Day 8, Mid-day edit: Steve did great today! He was able to lift both knees! It was one at a time, but he was able! And he could lift his left elbow about an inch off of the bed. (He continues to be very grateful for his stick.)
The breath test before lunch showed that he could breathe-push the test apparatus to 4500, 4000 consistently. The test container only goes to 5000. Not even sure what the test is called or what 5000 stands for.
The nurses allowed him to keep it.
I had a momentary panic when the nurse at the morning visit yesterday said that they were going to move Steve to a regular room on Monday. Steve cannot sit up, walk unassisted, or lift his head off the pillow. The nurse said that someone would have to stay with Steve 24/7 in the regular room since he could still have respiratory distress and it might take a few minutes for a floor nurse to get to him. But Dr. Young came right in and said no. Dr. Young wants Steve to have more "trunkal strength" before he is moved. Dr. Bajawa and the on-call hemotologist over the weekend both think that Steve will be moved soon. Praying for Steve to regain muscle strength quickly. His platelet count, dangerously low at 13,000 a week ago, is now up to 130,000. Praising God for the increase!
I found a GBS newsletter/support web-site. http://gbs-cidp.org/newsletters/pdfs/GBSMedNL0910web.pdf
On pages 2 and 3, there was an equation that tried to predict if a person was going to be able to walk unaided in 6 months. With Steve's age, the fact that he didn't have any diarrhea and where I think he will be in a week (which will be the two week marker of the onset of his symptoms) , his "number" is going to be a 3 or a 4. Right now he is bed-ridden. But if this graph can be believed, he should be walking unassisted by the first of July.
Steve always seems to have a smile for me, and I have fed him during the last couple of visits. I stopped by the church yesterday, just for a few minutes, to see familiar faces, people who were happy to see me, to apologize to friends for missed messages, to re-connect. It was both wonderful and heart-wrenching. I know I don't want to burden others. This recovery is going to take months, not days, and I am finding it difficult to ask for help. People have their own needs. Part of my anxiety is that I have NO CLUE what to expect. Two months in a regular room? Two days in a room and twenty-one days in rehab then to our home? Three months in ICU? The doctors continue to be vague, not to be unhelpful, but because it all depends on Steve. God help us.
Speaking of God: When God declares Himself as I AM, you cannot stand in His presence.
We have to fill out forms for short term disability, I need to contact our tax guy about how to estimate taxes for that, go by the cleaners, and put out the recycling. Terri helped me with the three big things I needed to do over the weekend: hang the curtains, put the Christmas boxes in the attic, and wash/vacuum my car. Thanks daughter!
Monday, Day 8, Mid-day edit: Steve did great today! He was able to lift both knees! It was one at a time, but he was able! And he could lift his left elbow about an inch off of the bed. (He continues to be very grateful for his stick.)
The breath test before lunch showed that he could breathe-push the test apparatus to 4500, 4000 consistently. The test container only goes to 5000. Not even sure what the test is called or what 5000 stands for.
Sunday, January 30, 2011
Day 6
The most beautiful day yet of the new year. Bright sunshine, at noon it was in the high fifties. The morning visit was typical, got the lab updates, vitals looked the same. Steve was again in good spirits. I went outside while waiting for the 1:30 visit.
The thing about hospitals is that they are full of needy people. Patients need care, family and friends need updates and encouragement, the staff needs time to perform duties, everyone needs patience and respect.
Terri arrived for the 1:30pm visit, and Steve was again congenial. We chatted through our 20 minutes (Terri kept the clock for me) and I did a few muscle manipulations for Steve.
Terri and I left to eat and get our cars washed. At the 4:30 visit, Steve asked us to bring some new DVD's. Off we go to Barnes and Noble.
As we left B&N, I received a phone call from one of Steve's doctors, Dr. Young, who is the pulmonologist and critical care guy. Of the five or so doctors hovering over Steve, Dr. Young has been the most encouraging (after the initial ER guy who squatted on the floor to talk to us). Dr. Young said that he wanted to upgrade Steve from a liquid diet to a pureed one, but since Steve needed to be spoon fed, would I be willing to come to the hospital to feed Steve. Of course!
At 8:30pm, we bustled in with new DVD's and Steve had a turkey sandwich on wheat beside him on the table. The nurse, Anoushka (ah- NOOSH- kah), came in to announce that Steve was now officially back on solid food as long as he had no problems swallowing. Steve ate the whole thing, sans crusts. We discussed feeding times, Cream of Wheat/pablum, vanilla yogurt (that exchange between the Anoushka and Steve was most entertaining), the loud 'talking' of the patient next door, Auburn fans/Alabama fans/agnostics... It was the best visit ever!
Steve also said that his physical therapy was being bumped up to the next level. He was now going to be pushed to sit, to stand and to feed himself.
Can I get an AMEN and HALLELUJAH!
The thing about hospitals is that they are full of needy people. Patients need care, family and friends need updates and encouragement, the staff needs time to perform duties, everyone needs patience and respect.
Terri arrived for the 1:30pm visit, and Steve was again congenial. We chatted through our 20 minutes (Terri kept the clock for me) and I did a few muscle manipulations for Steve.
Terri and I left to eat and get our cars washed. At the 4:30 visit, Steve asked us to bring some new DVD's. Off we go to Barnes and Noble.
As we left B&N, I received a phone call from one of Steve's doctors, Dr. Young, who is the pulmonologist and critical care guy. Of the five or so doctors hovering over Steve, Dr. Young has been the most encouraging (after the initial ER guy who squatted on the floor to talk to us). Dr. Young said that he wanted to upgrade Steve from a liquid diet to a pureed one, but since Steve needed to be spoon fed, would I be willing to come to the hospital to feed Steve. Of course!
At 8:30pm, we bustled in with new DVD's and Steve had a turkey sandwich on wheat beside him on the table. The nurse, Anoushka (ah- NOOSH- kah), came in to announce that Steve was now officially back on solid food as long as he had no problems swallowing. Steve ate the whole thing, sans crusts. We discussed feeding times, Cream of Wheat/pablum, vanilla yogurt (that exchange between the Anoushka and Steve was most entertaining), the loud 'talking' of the patient next door, Auburn fans/Alabama fans/agnostics... It was the best visit ever!
Steve also said that his physical therapy was being bumped up to the next level. He was now going to be pushed to sit, to stand and to feed himself.
Can I get an AMEN and HALLELUJAH!
Friday, January 28, 2011
good news is always welcome (Day 5)
Steve's boss, Steve Junkins, stopped by the hospital waiting area to give me forms that must be filled out for short term disability. He wants me to convey to Steve that his work is being covered. The customers are being patient. Lisa Sallo brought a (really cute) bag of bottled water, snacks and chocolates. Perfect. She said that there was plenty of work that wasn't going away, so Steve would have plenty to do. The office was encouraging Steve to focus on his own health and to get better; to not worry. The vice president, Pat Renegar, encouraged me to fill out the forms quickly. the impression is that since they have to be filled out by the doctor that it might take a couple of days.This is all pretty good news. I know Steve will be happy I met with them.
timelines are tedious
Hopefully I can finish the summation while I wait for the ICU visitation times. Steve was admitted to the Medical ICU from the ER.
Filling in some details. Here is a short video of the plasmapheresis machine at work. This was his second treatment on Friday.
The ER doctor wanted to do a spinal tap to confirm the GBS, but with the platelet count so low, the risk so high, that they decided against the spinal tap. The fear would be that Steve would bleed out. They did a electric shock test on both legs and both arms that Steve said was very painful. While his muscles act paralyzed, he can feel everything. One nurse did a artery test, removing blood from an artery, not a vein, to measure the oxygenation of the blood.
The scary thing was how fast the disease took over. Steve and I went to a friend's retirement party Saturday night, and Monday morning Steve couldn't stand or walk.
After two days of immune globulins and three transfusions of platelets, Steve's responses started to improve. He was still having problems swallowing so he remained on a liquid diet. He had his first plasmapheresis treatment (machine is shown above) on early Thursday morning. The next treatment was Friday evening, and his third on Sunday. A surgeon put a line in Steve's jugular, on his right side of his neck. The machine has tubes that pull his blood out of his body, remove the plasma and introduce a new plasma. The process takes between 80 and 120 minutes. The line has gotten clotted and the treatments take slightly longer each time. The immune globulins are not given while the plasmapheresis is being done. Huntsville Hospital is one of three hospitals in the state that has the machine.
A speech therapist came in on Thursday after the first plasmapheresis and did an evaluation. He did so well that they started him on solid food Thursday night. Now he was getting Cream of Wheat for breakfast. With vanilla yogurt. The cafeteria must have gotten a really good deal on vanilla yogurt, 'cause Steve got vanilla yogurt with every meal. The night nurse saw how much Steve liked it and offered to make sure some got boxed up for Steve to take with him when he got discharged.
The ER doctor wanted to do a spinal tap to confirm the GBS, but with the platelet count so low, the risk so high, that they decided against the spinal tap. The fear would be that Steve would bleed out. They did a electric shock test on both legs and both arms that Steve said was very painful. While his muscles act paralyzed, he can feel everything. One nurse did a artery test, removing blood from an artery, not a vein, to measure the oxygenation of the blood.
The scary thing was how fast the disease took over. Steve and I went to a friend's retirement party Saturday night, and Monday morning Steve couldn't stand or walk.
After two days of immune globulins and three transfusions of platelets, Steve's responses started to improve. He was still having problems swallowing so he remained on a liquid diet. He had his first plasmapheresis treatment (machine is shown above) on early Thursday morning. The next treatment was Friday evening, and his third on Sunday. A surgeon put a line in Steve's jugular, on his right side of his neck. The machine has tubes that pull his blood out of his body, remove the plasma and introduce a new plasma. The process takes between 80 and 120 minutes. The line has gotten clotted and the treatments take slightly longer each time. The immune globulins are not given while the plasmapheresis is being done. Huntsville Hospital is one of three hospitals in the state that has the machine.
A speech therapist came in on Thursday after the first plasmapheresis and did an evaluation. He did so well that they started him on solid food Thursday night. Now he was getting Cream of Wheat for breakfast. With vanilla yogurt. The cafeteria must have gotten a really good deal on vanilla yogurt, 'cause Steve got vanilla yogurt with every meal. The night nurse saw how much Steve liked it and offered to make sure some got boxed up for Steve to take with him when he got discharged.
Day 1
I had never heard of Guillain-Barre Syndrome before Monday, January 24, 2011. Then I didn't know how to pronounce it. My French sounds like garbage. I settled on Gee Yun Bar Ray. Hard G sound, like the G in goose.
Steve had complained about tingling in his fingers and hands on the 21st. But he'd had symptoms like this before when his doctor had him on Niaspan several years ago. Since then, Steve had started taking niacin with an aspirin. So now, with this tingling, he thought it was a reaction to the niacin. Saturday, he again would clench-open-clench his fists and talk about numbness and tingling.
And now for the backstory: Steve has sleep apnea and now uses a CPAP machine. It's great! It is like soft white noise for me, and it allows Steve to sleep in any position now without snoring. (His snoring was never bad to me, but my daughter complained.) We had gotten back from Arizona where we attended the BCS National Championship, Auburn vs Oregon. WAR EAGLE! But while in AZ, Steve picked up a cold. So here we are at Saturday night, January 22, 2011 and Steve cannot cough while wearing his CPAP mask.
Saturday night into Sunday was a bust for sleep. Steve would try to cough against the mask, wake up, move the mask, cough, re-attach... it must have been six or seven times.
Sunday afternoon, I made it to afternoon choir practice and a few minutes later I see Steve at practice. But he looks terrible. He was extremely unsteady on his feet. I followed him home and we went to bed early.
Monday, Steve asked me to drive him to his doctor's office. Without an appointment. He wanted to be a walk-in. I was expecting a four hour wait. Steve held on to the back of my coat to get to the car. It was rush hour traffic, and the doctor was 30 minutes away but 20 minutes into the drive, Steve tells me to take him to the ER. He talked about muscle weakness, tingling, and then said, "I might stop breathing." So, without a word, I turned around to get to the ER.
Steve needed a wheel chair now when he got out of the car. The ER was practically empty, and by the time I had parked the car, they were calling him back to room D40. And there we stayed for 14 hours.
Ok, now things start to blur, so I will highlight:
His platelet count was supposed to be 150,000. His was 13,000.
The nurse chided me because, "Any tingling in the hands could be the first sign of a stroke. You should always come to the ER if you have any tingling." I wake up with tingling every day. Who knew?
When Steve first went back to the ER, there were at least six other people hovering over him. They took vitals, undressed him, got med info, papers signed, bracelets checked... I will add more later as I remember.
It was late in the afternoon when the neurologist started saying "GBS". Mind you, his accent was rather thick and we had to ask him to repeat a couple of times. (Like a Decatur girl trying to speak French, man-oh-man.)
They wanted to admit him, but there were no beds in the inn, I mean, hospital.
Steve had complained about tingling in his fingers and hands on the 21st. But he'd had symptoms like this before when his doctor had him on Niaspan several years ago. Since then, Steve had started taking niacin with an aspirin. So now, with this tingling, he thought it was a reaction to the niacin. Saturday, he again would clench-open-clench his fists and talk about numbness and tingling.
And now for the backstory: Steve has sleep apnea and now uses a CPAP machine. It's great! It is like soft white noise for me, and it allows Steve to sleep in any position now without snoring. (His snoring was never bad to me, but my daughter complained.) We had gotten back from Arizona where we attended the BCS National Championship, Auburn vs Oregon. WAR EAGLE! But while in AZ, Steve picked up a cold. So here we are at Saturday night, January 22, 2011 and Steve cannot cough while wearing his CPAP mask.
Saturday night into Sunday was a bust for sleep. Steve would try to cough against the mask, wake up, move the mask, cough, re-attach... it must have been six or seven times.
Sunday afternoon, I made it to afternoon choir practice and a few minutes later I see Steve at practice. But he looks terrible. He was extremely unsteady on his feet. I followed him home and we went to bed early.
Monday, Steve asked me to drive him to his doctor's office. Without an appointment. He wanted to be a walk-in. I was expecting a four hour wait. Steve held on to the back of my coat to get to the car. It was rush hour traffic, and the doctor was 30 minutes away but 20 minutes into the drive, Steve tells me to take him to the ER. He talked about muscle weakness, tingling, and then said, "I might stop breathing." So, without a word, I turned around to get to the ER.
Steve needed a wheel chair now when he got out of the car. The ER was practically empty, and by the time I had parked the car, they were calling him back to room D40. And there we stayed for 14 hours.
Ok, now things start to blur, so I will highlight:
His platelet count was supposed to be 150,000. His was 13,000.
The nurse chided me because, "Any tingling in the hands could be the first sign of a stroke. You should always come to the ER if you have any tingling." I wake up with tingling every day. Who knew?
When Steve first went back to the ER, there were at least six other people hovering over him. They took vitals, undressed him, got med info, papers signed, bracelets checked... I will add more later as I remember.
It was late in the afternoon when the neurologist started saying "GBS". Mind you, his accent was rather thick and we had to ask him to repeat a couple of times. (Like a Decatur girl trying to speak French, man-oh-man.)
They wanted to admit him, but there were no beds in the inn, I mean, hospital.
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