Steve went back for his 6 month check up with the neurologist, Dr. Rao Nadella. Steve said it was short and uninteresting. He will go back in 6 months. Every so often, Steve will mention some tingling in his hands and a "tired" feeling in his upper chest/throat area.
Steve also went back to the gym last week and has been three times this week. He says he feels good during the workout, just needs to work on his stamina. He went 10 minutes at 3.0 speed at 10 degrees on the treadmill.
And to prove that he is returning to normal, we spent the Saturday putting in zoysia plugs in the front yard area. I had to quit before he did.
Friday, July 15, 2011
Thursday, June 2, 2011
Five and a half months and counting.
Steve continues to walk down stairs with wobbly legs, but he says that he's never slept better. The small aches and pains that kept him awake have disappeared. Steve attributes pain-free sleep to GBS.
We cleaned out a major portion of Steve's dad's house last weekend. Toward the end of the day, lifting heavy objects (like a TV) was too much of a strain. He felt very fatigued. But he has mentioned grabbing work-out clothes and heading to the Y more often, so I suspect it will happen soon. The physical therapy group called, and unless Steve has a pressing need for more therapy (which I doubt), they will discharge him.
One more thing checked off the list.
We cleaned out a major portion of Steve's dad's house last weekend. Toward the end of the day, lifting heavy objects (like a TV) was too much of a strain. He felt very fatigued. But he has mentioned grabbing work-out clothes and heading to the Y more often, so I suspect it will happen soon. The physical therapy group called, and unless Steve has a pressing need for more therapy (which I doubt), they will discharge him.
One more thing checked off the list.
Thursday, April 21, 2011
It's been almost 4 months...
Steve still has vestiges of his GBS. He confessed today that if he has to talk loudly for an extended period of time, that his jaw and chest start having that same sensation of muscle fatigue. He still doesn't have reflexes in his elbow and knees.
Last week, on the 11th, we went to visit his dad at his dad's home. His dad was lying on his right side with his left leg on the coffee table because then his left side didn't hurt so badly. We took him on to the ER and an X-ray confirmed a broken rib.
While there, the attending ER physician recognized Steve. Steve told him that he [Steve] had been in the ER in January with Guillian Barre. After exchanging a few excited words, the doctor asked Steve to "get up and walk!" The doctor was impressed with Steve's recovery.
Last week, on the 11th, we went to visit his dad at his dad's home. His dad was lying on his right side with his left leg on the coffee table because then his left side didn't hurt so badly. We took him on to the ER and an X-ray confirmed a broken rib.
While there, the attending ER physician recognized Steve. Steve told him that he [Steve] had been in the ER in January with Guillian Barre. After exchanging a few excited words, the doctor asked Steve to "get up and walk!" The doctor was impressed with Steve's recovery.
Saturday, April 2, 2011
Thursday, March 17, 2011
He Put the Cane Away
He went to work without his cane, as a test. He is still 'c a r e f u l' going down stairs. The cane is in the umbrella stand if/when he needs it.
Tuesday, March 15, 2011
Latest development
Steve was able to stand up from a full squat using only his legs. He continues to work full time, and this may be his last week of therapy.
The neurologist said that Steve's progress was average.
Ha.
The neurologist said that Steve's progress was average.
Ha.
Monday, March 7, 2011
First Day of School, I mean, Work
He gave a short synopsis of what had happened to him, the he then headed to work. Steve had told me before he'd left this morning that he was dreading his email inbox. But he had to go through some iterations of upgrades to the operating system before he could even get to the mailbox. He was busy, but it felt great, he said. He's resting quietly.
Inbox emails = 220+
Friday, March 4, 2011
Small improvements
Steve can 1) cross his legs without swinging for momentum first and 2) he can get off of the ground using only his legs and cane. Let me 'splain.
Have you ever seen the movie The Princess Bride? When Wesley had been mostly dead and the trio was getting ready to storm the castle, Wesley had to swing his shoulders to sling his hand up. That was what Steve had to do to cross his legs: swing for momentum.
Steve has been working on using his legs with control. He would go up the steps looking like a cross between a stiff-legged Frankenstein monster and the robot from the old Lost In Space show with wildly swinging arms. Steve has been worried about falling and being unable to get back up. The therapists have been helping but Steve continued to struggle. Today at therapy and twice at home, Steve was able to push up from the floor with his legs using the cane as a prop and for balance. It deserves applause.
Have you ever seen the movie The Princess Bride? When Wesley had been mostly dead and the trio was getting ready to storm the castle, Wesley had to swing his shoulders to sling his hand up. That was what Steve had to do to cross his legs: swing for momentum.
Tuesday, March 1, 2011
Look Ma, No Cane!
Steve walked up our front porch steps without a cane. It was barely controlled, but he made it. He still struggles with lifting his legs especially getting in/out of my car, and he cannot use only his legs to stand from a low-ish chair. His shoulders are mobile, but I won't let him pour himself a glass of tea from a full jug -- jiggling jugs generate splatters.
Thursday, February 24, 2011
First Out Patient Rehab and Steve Drives Again
Yesterday was Steve's first out-patient therapy session at Nesin Therapy near Crestwood Hospital. He said it was a very in-depth assessment, and she explained in specific detail what she saw as his areas of focus. His flexor muscles (from his thighs to his hips), his abdomen, and his shoulders are what his home exercises will help strengthen. Steve was able to go up and down steps MUCH better today than yesterday.
We will return to Nesin one more time this week and three times next week.
We scheduled a service trip for his car weeks ago, so Steve tried driving today. No incidents!
Another level of physical autonomy: CHECK.
Another set of prayers lifted up: CHECK CHECK.
We will return to Nesin one more time this week and three times next week.
We scheduled a service trip for his car weeks ago, so Steve tried driving today. No incidents!
Another level of physical autonomy: CHECK.
Another set of prayers lifted up: CHECK CHECK.
Tuesday, February 22, 2011
Day 30. "Fastest Recovery Seen"
Steve said that he kept hearing from the techs and nurses that his recovery was the fastest recovery they'd ever seen.
This sign greeted Steve as we drove up, installed by Sandra and our church.
Monday, February 21, 2011
Day 29... Steve is coming home tomorrow.
I had my 'family education' today. First off was the Physical Therapist - she asked Steve to show me how he can handle steps with a cane. While Steve has done some tremendous, remarkable things these last weeks, he is still weak. He gets very tired and has to rest frequently.
This video shows how he relies on the cane, especially on the down-step part.
I will have to help him on stairs that don't have rails (like our front porch) to keep him from losing his balance. She agreed that Steve needed more therapy as an out-patient to strengthen his muscles (leg, abdomen, and back) and ordered Steve a walker. A special walker, with a seat that could be a table...
Meeting number 2 was with the Occupational Therapist, who told Steve that she hated to see him go. She was proud of his progress and his work ethic was superb; she did not recommend any additional Occupational Therapy. My oh-so-social husband (see the tongue in my cheek?) was chatting with some of the other patients, and shaking hands with other therapists since it was his last day there.
Meeting number 3 was with the nurse. She also seemed sad/glad to see Steve leave. She listed each of his medicines that he would get on discharge, each one having a 30 day prescription. Dr. Young's young doctor-protege came in to say that Steve's regular doctor would receive the chart of Steve's stay at Huntsville Hospital and at HealthSouth. We need to set up an appointment to discuss the diagnosis, meds and treatment. She also wants Steve to have a follow-up meeting with the original neurologist, Dr. Nadella.
The last visit was with the case manager, who discussed each therapist's/nurse's notes and made final recommendations. Steve will have out-patient therapy two or three times a week at Nesin Therapy, which is closer to us off of Whitesburg Dr.
There was a panel discussion, and it was agreed that Steve could return to work on March 7th.
I will arrive Tuesday morning (after I get the 6 month handicap hang-tag from the license department) and will load 'em up and move 'em out.
So ladies and gentlemen, I will probably post sporadically from now on, when I have interesting info or a great photo. We've received so many blessings (Gladys, Jennifer and Cindy tackled the potato spawn in my pantry. THANKS). We have a mantle full of cards. We have felt the warmth of prayers. We have seen the generosity of friends and family. We have seen God. There are not enough superlatives to describe His love, His mercy, His guidance... He is good, all of the time.
This video shows how he relies on the cane, especially on the down-step part.
Meeting number 2 was with the Occupational Therapist, who told Steve that she hated to see him go. She was proud of his progress and his work ethic was superb; she did not recommend any additional Occupational Therapy. My oh-so-social husband (see the tongue in my cheek?) was chatting with some of the other patients, and shaking hands with other therapists since it was his last day there.
Meeting number 3 was with the nurse. She also seemed sad/glad to see Steve leave. She listed each of his medicines that he would get on discharge, each one having a 30 day prescription. Dr. Young's young doctor-protege came in to say that Steve's regular doctor would receive the chart of Steve's stay at Huntsville Hospital and at HealthSouth. We need to set up an appointment to discuss the diagnosis, meds and treatment. She also wants Steve to have a follow-up meeting with the original neurologist, Dr. Nadella.
The last visit was with the case manager, who discussed each therapist's/nurse's notes and made final recommendations. Steve will have out-patient therapy two or three times a week at Nesin Therapy, which is closer to us off of Whitesburg Dr.
There was a panel discussion, and it was agreed that Steve could return to work on March 7th.
I will arrive Tuesday morning (after I get the 6 month handicap hang-tag from the license department) and will load 'em up and move 'em out.
So ladies and gentlemen, I will probably post sporadically from now on, when I have interesting info or a great photo. We've received so many blessings (Gladys, Jennifer and Cindy tackled the potato spawn in my pantry. THANKS). We have a mantle full of cards. We have felt the warmth of prayers. We have seen the generosity of friends and family. We have seen God. There are not enough superlatives to describe His love, His mercy, His guidance... He is good, all of the time.
Saturday, February 19, 2011
Day 27. Getting the house ready for Steve to come home.
John Cranston and Steve Sutton dropped by today to move the heavy stuff for me. We got the recliner moved out to the living room, which was my main goal.
Laura Aquila has offered to help organize some food and cleaning. I had opened the pantry looking for cereal and discovered a potato with a 4 inch root. HELP.
Laura Aquila has offered to help organize some food and cleaning. I had opened the pantry looking for cereal and discovered a potato with a 4 inch root. HELP.
Friday, February 18, 2011
Thursday, February 17, 2011
Day 25. Talking about next week...
Steve has the choice of home health or a facility run therapy. The doctors are going to discuss it and give a recommendation. Steve prefers a facility because of access to equipment, but we will see how it turns out. Steve walked 500 feet with a cane today. He continues to work on leg and hip strength. He worked up a sweat on the arm machine and did several reps of sit-stands, leg lifts, leg swings, etc.
Wednesday, February 16, 2011
Tuesday, February 15, 2011
Day 23, Shufflin' Down the Corridor
When I asked "what's new" today, Steve said that he actually walked while holding the walker off the floor. It's difficult though, since he doesn't have hip strength yet. He will lean to a side and shuffle the other leg forward, put weight on it, lean the other way, lather, rinse, repeat. He admitted that it was very tiring.
We talked about what was needed for his homecoming. I will have to rearrange some furniture, take up the area rugs I have scattered about, etc. Steve doesn't think he will need a ramp on the front porch. I am going to buy a few items for the tub. This time next week is going to be a celebration.
We talked about what was needed for his homecoming. I will have to rearrange some furniture, take up the area rugs I have scattered about, etc. Steve doesn't think he will need a ramp on the front porch. I am going to buy a few items for the tub. This time next week is going to be a celebration.
Monday, February 14, 2011
Day 22. Lee "Lightfoot" Edwards helps again!
I started running fever after church yesterday, so I put myself to bed. Lee took Steve to the dentist to get Steve's crown replaced.
BREAKING NEWS BREAKING NEWS BREAKING NEWS BREAKING NEWS
Steve just called me to let me know that he will probably be discharged from HealthSouth to home on Tuesday, February 22nd. I don't know if he will have home health care, since I missed the family evaluation meeting this morning.
Be still oh restless soul of mine
Bow before the prince of Peace
Let the noise and clamor cease
Be still and know that He is God
Be still and know that He is faithful
Consider all that He has done
Stand in awe and be amazed
And know that He will never change
Be still and know that He is God
Be still
Be speechless
Be still and know that He is God
Be still and know He is our Father
Come rest your head upon His breast
Listen to the rhythm of
His unfailing heart of love
Beating for His little ones
Calling each of us to come... - Steven Curtis Chapman
BREAKING NEWS BREAKING NEWS BREAKING NEWS BREAKING NEWS
Steve just called me to let me know that he will probably be discharged from HealthSouth to home on Tuesday, February 22nd. I don't know if he will have home health care, since I missed the family evaluation meeting this morning.
Be still oh restless soul of mine
Bow before the prince of Peace
Let the noise and clamor cease
Be still and know that He is God
Be still and know that He is faithful
Consider all that He has done
Stand in awe and be amazed
And know that He will never change
Be still and know that He is God
Be still
Be speechless
Be still and know that He is God
Be still and know He is our Father
Come rest your head upon His breast
Listen to the rhythm of
His unfailing heart of love
Beating for His little ones
Calling each of us to come... - Steven Curtis Chapman
Saturday, February 12, 2011
Day 20, May I Join Your Group?
Steve was able to join in with some group therapy today. He walked several hundred feet and got to practice on the stair stepper.
Friday, February 11, 2011
Day 19. Valentines Banquet, Tooth Crowns, and Grandpa's Billfold
The good news first: Steve walked 650 feet with a walker and a tech alongside. And in the continuing saga of "what's new today?", Steve is now able to lean forward and stand up from a sitting position.
I had gone to Steve's dad's house to check on Grandpa. I have not been over there since Steve got sick. Grandpa was messin' with the truck, running the engine, trying to "make it keep a charge." We went inside, talked about a few things, and I left. Not long afterwards, Grandpa called me, wanting to know if I'd seen his billfold. No, but Joel was able to find it: in yesterday's pants.
Steve called me with the unhappy circumstance of a loose crown. He'd managed to push it back on, but he's worried that he might swallow it. Our dentist is closed on Fridays, and we were not sure how to work out him even getting out of the rehab building to see the dentist. Dr. Young said that the procedure is to make an emergency appointment, and Steve would get a pass to go. So on Monday, we will try to get his crown replaced, or at least get the process started.
Lastly, tonight is our church's Valentines Banquet, and Jim McFarlen is cooking. We both hate the fact that we are missing the fun and the food. Just wait'll next year!
I had gone to Steve's dad's house to check on Grandpa. I have not been over there since Steve got sick. Grandpa was messin' with the truck, running the engine, trying to "make it keep a charge." We went inside, talked about a few things, and I left. Not long afterwards, Grandpa called me, wanting to know if I'd seen his billfold. No, but Joel was able to find it: in yesterday's pants.
Steve called me with the unhappy circumstance of a loose crown. He'd managed to push it back on, but he's worried that he might swallow it. Our dentist is closed on Fridays, and we were not sure how to work out him even getting out of the rehab building to see the dentist. Dr. Young said that the procedure is to make an emergency appointment, and Steve would get a pass to go. So on Monday, we will try to get his crown replaced, or at least get the process started.
Lastly, tonight is our church's Valentines Banquet, and Jim McFarlen is cooking. We both hate the fact that we are missing the fun and the food. Just wait'll next year!
Thursday, February 10, 2011
Day 18, Second Day in Rehab
Steve 'walked' 200 feet today... with a walker while being followed by a wheelchair. He does arm lifts and arm cranks for arm and hand strength. He has three areas that need strengthening: his legs, shoulders and abdomen. The doctor said again that each person's recovery is unique. No one knows but God when Steve's recovery will be complete. And no amount of work will make the recovery go faster. Because Steve was immobile for so long, he has to build those muscle groups back. Then, when the nerves are healed, the muscles will be ready. As I told my sister Molly, there's no indication that the healing has happened; there's no 'power surge', no instant strength, no sweeping orchestral music score to let the audience know that something wonderful has happened. Steve just discovers he is able to do something today that he couldn't do yesterday.
People have been asking what kind of room Steve has in rehab. Here's his current room. He shares "facilities" with an adjoining room.
People have been asking what kind of room Steve has in rehab. Here's his current room. He shares "facilities" with an adjoining room.
Wednesday, February 9, 2011
Day 17 and it's the first full day of rehab
Steve told me about his day as he sat in a chair. Sitting in a chair is also part of his recovery, and he "has to work at it" too.
The evaluation process took all day. He was poked, prodded, wheeled, and the coup de grace was being able to walk, with a walker, 74 feet. With a normal stride (well, pretty close to a normal stride). Steve wanted to see how far he could actually go, but fatigue and muscle shudders made him stop. Not bad. Dr. Young did a quick visit.
The snowfall started coming down fast and furious, so I left before it got bad. The temperatures were falling quickly.
The evaluation process took all day. He was poked, prodded, wheeled, and the coup de grace was being able to walk, with a walker, 74 feet. With a normal stride (well, pretty close to a normal stride). Steve wanted to see how far he could actually go, but fatigue and muscle shudders made him stop. Not bad. Dr. Young did a quick visit.
Tuesday, February 8, 2011
Day 16 (And holding my breath)
Dr. Young came in and has given permission to move Steve to rehab... hopefully by this afternoon...
*EXHALES*
Steve is at HealthSouth Rehab facility on Governors Drive.
Visiting hours:
Monday - Saturday: 4:00 p.m. - 8:00 p.m.
Sunday & Holidays: 12:00 p.m. - 8:00 p.m.
*EXHALES*
Steve is at HealthSouth Rehab facility on Governors Drive.
Visiting hours:
Monday - Saturday: 4:00 p.m. - 8:00 p.m.
Sunday & Holidays: 12:00 p.m. - 8:00 p.m.
Monday, February 7, 2011
Day 15
Well, Steve may not move to the rehab until later in the week. But Steve did walk about 5 feet today! And the Frankenstein-prosthesis has been removed, thank God! The plasmapheresis treatments are over.
Sunday, February 6, 2011
Day 14, To stand or not to stand, that is the question
I walked in Steve's room this morning, and the physical therapists had Steve standing with a walker. Steve was concentrating, with sweat on his brow, but he was standing. He'd pulled a muscle in his back during Friday's PT, and he was having some twinges. He stood for several minutes before sitting back down on the edge of the bed. When asked if he could move to a chair, Steve said, "I could probably get there ok but I might not be able to get up again." They tried several techniques on him. One was for him to close his eyes and let the therapist punch-poke him in different areas and for him to react in time to not fall over but actually resist the punch. He did very well.
The doctors are still talking about Steve moving to HealthSouth Rehab facility on Tuesday. The PT's and nurses all warn Steve that he is going to have rigorous PT once he gets there. We are cautiously thrilled.
One last edit: the nurse that came in late Sunday night said that she has seen several patients with GBS, but Steve has recovered the fastest of all. She has never seen anyone recover as quickly as Steve has. *high fives God*
The doctors are still talking about Steve moving to HealthSouth Rehab facility on Tuesday. The PT's and nurses all warn Steve that he is going to have rigorous PT once he gets there. We are cautiously thrilled.
One last edit: the nurse that came in late Sunday night said that she has seen several patients with GBS, but Steve has recovered the fastest of all. She has never seen anyone recover as quickly as Steve has. *high fives God*
Saturday, February 5, 2011
Day 13, Our church loves us
I have to give thanks to God for the loving help that West Huntsville has given us. The visits, the CARDS, the DVDDVDDVDDVDDVD's, the crispy one dollars bills for tokens, the stamps, the emails, but most of all the prayer covering. As John Cranston said, heaven was barraged with Steve Call's name. I give credit to an ALL IN God, those prayers, and the undeniable determination of Steve for Steve's miraculous recovery. While some who have this disease get so paralyzed that they cannot move anything but their eyes, Steve was allowed to not even need a respirator. Thank you, Jehovah Rapha, the One Who Heals.
I was texting my sister Jane and Terri when Steve was in the ER, and Jane sent back a short description of Guillain-Barre' Syndrome. When I looked at the name "Guillain" my Decatur-brain saw "Gilligan". Then later, Joel and I started talking about "moving to another island" and that's when I came up with the name of the blog. Of course, some of you are not old enough to know about Gilligan's Island. Let's just say that none of the 'castaways' ever had a bad hair day.
Thanks also to Kaye McFarlen and Ken Helphand who have stayed with Steve for me to get some time home. Ranger needs a little attention, too. Thanks to Patricia Jeffreys, Dawne Douthit, Cindy Kosanda, Steve Junkins and the Wyle CAS group (best ever!), Sandy Brown et al, Kim Schneider, Frances Zimmerman, and a small multitude of others to have fed me, let Ranger out, brought bottled water, visited with me and Steve, exchanged emails with me... May God Almighty richly bless you all. As God has comforted me, may He comfort you with HIS comfort, may He bless you out of HIS riches.
John Cranston brought a group of men from the church to help with the Christmas light removal. Lee "Lightfoot" Edwards climbed on the roof.
I was texting my sister Jane and Terri when Steve was in the ER, and Jane sent back a short description of Guillain-Barre' Syndrome. When I looked at the name "Guillain" my Decatur-brain saw "Gilligan". Then later, Joel and I started talking about "moving to another island" and that's when I came up with the name of the blog. Of course, some of you are not old enough to know about Gilligan's Island. Let's just say that none of the 'castaways' ever had a bad hair day.
Thanks also to Kaye McFarlen and Ken Helphand who have stayed with Steve for me to get some time home. Ranger needs a little attention, too. Thanks to Patricia Jeffreys, Dawne Douthit, Cindy Kosanda, Steve Junkins and the Wyle CAS group (best ever!), Sandy Brown et al, Kim Schneider, Frances Zimmerman, and a small multitude of others to have fed me, let Ranger out, brought bottled water, visited with me and Steve, exchanged emails with me... May God Almighty richly bless you all. As God has comforted me, may He comfort you with HIS comfort, may He bless you out of HIS riches.
Friday, February 4, 2011
Day 12, continued
Steve's sister Sally dropped by for a visit this afternoon while I went home for a nap. When I got back, a rep with HealthSouth had stopped by to initiate a conversation about a rehab facility. I believe it's the same place Renate went to after her fall. Preliminary talk looks like late next week he will be discharged from the hospital to go there. Not sure how long yet. My visiting hours will go back to a strict schedule, but I am encouraged.
Steve has to inhale with this machine to keep his lungs from getting pneumonia.
Steve has to inhale with this machine to keep his lungs from getting pneumonia.
Day 12, First Morning in the Regular Room
Steve had quite a few nurse visits last night. I counted 9 separate visits between 11pm and 4am. But this morning, he was able to lift both arms all the way over his head and rested them on the pillow behind his head. The nurse said that the physical therapists were supposed to get him into a chair today.
The day after a treatment and some pain meds are the best times for Steve. Immediately following a plasmapheresis treatment, Steve is generally nauseous, anxious, restless... He still complains about his left hip, but he thinks it may have been a result of the physical therapy since he is stronger on his left side. The MRI's and CAT scans of his back on that first day back in January showed no trouble in his back, so it's not a spine issue.
The nurse said rehabilitation for the first time today.
Steve fed himself breakfast. He almost cleaned the whole plate before he got tired of holding the fork.
This was dinner the night before.
The day after a treatment and some pain meds are the best times for Steve. Immediately following a plasmapheresis treatment, Steve is generally nauseous, anxious, restless... He still complains about his left hip, but he thinks it may have been a result of the physical therapy since he is stronger on his left side. The MRI's and CAT scans of his back on that first day back in January showed no trouble in his back, so it's not a spine issue.
The nurse said rehabilitation for the first time today.
Steve fed himself breakfast. He almost cleaned the whole plate before he got tired of holding the fork.
This was dinner the night before.
Steve actually stood for the first time in 12 days. I had to drop off some paperwork at Steve's office. When I came back into the hospital room, the physical therapists were standing on either side of him as Steve stood next to a piece of machinery. The machine lets you rest your elbows on a rubber arm and your hands hold on to controls. Then the machine will lift your arms and balance you while you stand up. The best description for the machine is that it resembles a Tour de France bicycle handle-bars. You rest your arms on top and hold the vertical part to steer.
Remarkable!
Thursday, February 3, 2011
Day 11 SALUTE!!
Steve was moved to a regular room!
He did have another plasmapheresis treatment, 30 minutes after they'd moved him. The treatments continue to take twice as long, about 3 1/2 hours total. He comes back very nauseous and his left hip hurts him so much he wants me to rub it. The nurse came in and said to NOT rub it, because of the danger of blood clots. I had to be gentle, but gentle doesn't relieve the pain.
Steve did eat all of his barbecue, half of his mashed potatoes and all of his jello. But the treatments are taking a toll. I know that tomorrow Steve will not only feel better, but he will have more movement, more therapy, more progress. Steve just hurts right now and cannot get past the pain to think about tomorrow.
The hemotologist, Dr. Mathews, came in while I was there. Steve expressed his anxiety about the treatments and Dr. Mathews suggested a medicine (Ativan) that Steve can have before the treatments that will help. My sister Jane told me that chemotherapy patients get this same medicine while they are undergoing their chemo, to help with the nausea and calm them down: she'd had it herself. I know that Steve will be relieved to hear that the pre-treatment medicine will help.
The neurologist wants Steve to have two more plasmapheresis treatments.
Steve missed his physical therapy sessions, drat.
He did have another plasmapheresis treatment, 30 minutes after they'd moved him. The treatments continue to take twice as long, about 3 1/2 hours total. He comes back very nauseous and his left hip hurts him so much he wants me to rub it. The nurse came in and said to NOT rub it, because of the danger of blood clots. I had to be gentle, but gentle doesn't relieve the pain.
Steve did eat all of his barbecue, half of his mashed potatoes and all of his jello. But the treatments are taking a toll. I know that tomorrow Steve will not only feel better, but he will have more movement, more therapy, more progress. Steve just hurts right now and cannot get past the pain to think about tomorrow.
The hemotologist, Dr. Mathews, came in while I was there. Steve expressed his anxiety about the treatments and Dr. Mathews suggested a medicine (Ativan) that Steve can have before the treatments that will help. My sister Jane told me that chemotherapy patients get this same medicine while they are undergoing their chemo, to help with the nausea and calm them down: she'd had it herself. I know that Steve will be relieved to hear that the pre-treatment medicine will help.
The neurologist wants Steve to have two more plasmapheresis treatments.
Steve missed his physical therapy sessions, drat.
Day 10, You Must Salute To Leave
Today has started much better. Steve got more rest last night, and Kim was able to come in and visit/pray with us. When she left, Steve's lunch arrived simultaneously with the speech therapists. They watched me feed Steve, and their evaluation was that Steve is perfect, no problems swallowing, chewing or talking.
Dr. Young also came in while I was there. He has put Steve on an anti-coagulant to prevent blood clots and says that it should not interfere with his platelets at all. With the new drug, they have taken the pump-cuffs off of his calves (which made Steve very happy).
Dr. Young wanted to see muscle response. He told Steve that Steve could leave ICU when Steve could salute him. Steve managed to lift his elbow off of the bed by pressing his shoulder back and using his triceps to lift the elbow straight up. Today he lifted a full five inches, the most ever. Dr. Young was very encouraging to Steve, but there is no date yet as to when he will be out of ICU.
I sent that new progress to my sister, Jane. This was her response text:
"Salute! Forgive me, but a picture comes to mind from the old movie No Time For Sergeants where the character made all the toilet lids snap up to attention!"
That character would be Andy Griffith, who also suffered from Guillain-Barre Syndrome when he was 57. Steve is 56.
Dr. Young also came in while I was there. He has put Steve on an anti-coagulant to prevent blood clots and says that it should not interfere with his platelets at all. With the new drug, they have taken the pump-cuffs off of his calves (which made Steve very happy).
Dr. Young wanted to see muscle response. He told Steve that Steve could leave ICU when Steve could salute him. Steve managed to lift his elbow off of the bed by pressing his shoulder back and using his triceps to lift the elbow straight up. Today he lifted a full five inches, the most ever. Dr. Young was very encouraging to Steve, but there is no date yet as to when he will be out of ICU.
I sent that new progress to my sister, Jane. This was her response text:
"Salute! Forgive me, but a picture comes to mind from the old movie No Time For Sergeants where the character made all the toilet lids snap up to attention!"
That character would be Andy Griffith, who also suffered from Guillain-Barre Syndrome when he was 57. Steve is 56.
Steve still needs to work on his salute, but he is able to hold the iPad with it propped on his leg without too much trouble. He was able to reach over and pick up his ice water off of the table and put it back. Yes it had a lid, but the motions are what count here.
Tuesday, February 1, 2011
Day 9
Steve didn't rest well. The window blew open during the night, and the hospital items on the window ledge all fell off with a clatter. The nurse didn't know that the window could open. They tried to make it up to him by getting him a 6" Subway meatball sandwich. We made it an open faced sandwich so he didn't have as much bread (carbs). The lunch meal was pork roast slices with apples, roasted potatoes, green beans, a wheat roll and applesauce. I came back at 4:30 for a visit, and walked into an empty room. Has he been moved to a regular room, perhaps???
Alas, no. Now that he is stable, they took him to the dialysis room for his treatment. I went to wait in the waiting room.
No call, so I left at 6pm. At the 8:30 visit, Steve was back in the room. The plasmapheresis took longer than expected because of the line in his neck. He got back into his room at 7pm (he left for the treatment at 2pm). His dinner was cold and one of the nurses fed him. He is not feeling very well, and the nurse suspects the treatment. Steve's platelet levels are back into the 150,000's and his white blood count is down. Those are good. Since the treatment took so long, Steve missed the doctors' visits as well as the occupational therapists. His arms and legs get so tired of not moving, if that makes sense.
He was able to lift both elbows off of the bed, about 2 inches up. I am trying to get him to wiggle his shoulders and hips. He can lift his shoulders up and down, no problem. I think he would love a spa treatment.
He was tired so I didn't stay long.
We got A BUNCH of DVD's from people at church. He has some interesting TV viewing waiting for him!
When I missed seeing Steve at the 4:30 visitation time, I left the hospital. I joked later that the ICU owed me a token. When I came back at 8:30, I put my $2 in the machine and TWO TOKENS came out. God is good. All of the time.
Alas, no. Now that he is stable, they took him to the dialysis room for his treatment. I went to wait in the waiting room.
No call, so I left at 6pm. At the 8:30 visit, Steve was back in the room. The plasmapheresis took longer than expected because of the line in his neck. He got back into his room at 7pm (he left for the treatment at 2pm). His dinner was cold and one of the nurses fed him. He is not feeling very well, and the nurse suspects the treatment. Steve's platelet levels are back into the 150,000's and his white blood count is down. Those are good. Since the treatment took so long, Steve missed the doctors' visits as well as the occupational therapists. His arms and legs get so tired of not moving, if that makes sense.
He was able to lift both elbows off of the bed, about 2 inches up. I am trying to get him to wiggle his shoulders and hips. He can lift his shoulders up and down, no problem. I think he would love a spa treatment.
He was tired so I didn't stay long.
We got A BUNCH of DVD's from people at church. He has some interesting TV viewing waiting for him!
When I missed seeing Steve at the 4:30 visitation time, I left the hospital. I joked later that the ICU owed me a token. When I came back at 8:30, I put my $2 in the machine and TWO TOKENS came out. God is good. All of the time.
Monday, January 31, 2011
Day 8, evening
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."
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."
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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