Will got into his e-mail account and found 160 new messages waiting for him! It was a little daunting to say the least, but he began going through them with great enthusiasm and persisted long after his therapist thought he would have given up. Another thing he has developed an enthusiasm for is milk shakes. Scrambled eggs and oatmeal got short shrift but with a little e-stem cuing from his speech therapist, he was able to guzzle down a whole carton of honey sweetened milk shake with no slobbers. However, when his Residency Mentor, Dr. Glasgow, proposed doing some ballroom dancing with her, he had a sudden onset of shyness. One of his therapists suggested the funky chicken might be more his style but even that didn't capture his imagination. Dr. Glasgow was left to scrounge up a dance partner from some other source. Will received another beautiful blanket this week in the colors of his Medical School Alma Mater, Ohio State University (scarlet, black, gray). He is truly being wrapped in the arms of love by everyone here and his infectious grin and ready invitation to sit down and chat make his room the most popular place in rehab.
Mom
Thursday, February 28, 2008
Wednesday, February 27, 2008
Cryptogenic
Derivation: Greek
Meaning: "We have no idea what caused this."
Example: "Will's stroke was cryptogenic."
Strokes can be hemorraghic: the doctors found no bleeding in Will's brain.
Strokes can be embolic: they found no detectable blood clot remnants in the affected area of the brain. They found no clots in his extremities or pelvis, where clots form.
Strokes can have other rare causes: every screening for a rare cause has been negative.
But they did find a patent foramen ovale (PFO). This is a hole between the right and left sides of the heart that everyone has in utero. The flap over the hole usually closes at birth because blood pressure on the left side is greater than on the right.
The PFO is the only evidence in support of the embolism theory of Will's stroke. Will's cardiologist recommends that it be closed. The procedure will probably be done in 3 to 6 months, and probably will be done in Utah.
The cardiologist tried to get Will enrolled in a two-year clinical trial of methods to close PFO's. Will was rejected because he cannot give informed consent to participate, and because the trial sponsors will not accept parents' consent.
Meaning: "We have no idea what caused this."
Example: "Will's stroke was cryptogenic."
Strokes can be hemorraghic: the doctors found no bleeding in Will's brain.
Strokes can be embolic: they found no detectable blood clot remnants in the affected area of the brain. They found no clots in his extremities or pelvis, where clots form.
Strokes can have other rare causes: every screening for a rare cause has been negative.
But they did find a patent foramen ovale (PFO). This is a hole between the right and left sides of the heart that everyone has in utero. The flap over the hole usually closes at birth because blood pressure on the left side is greater than on the right.
The PFO is the only evidence in support of the embolism theory of Will's stroke. Will's cardiologist recommends that it be closed. The procedure will probably be done in 3 to 6 months, and probably will be done in Utah.
The cardiologist tried to get Will enrolled in a two-year clinical trial of methods to close PFO's. Will was rejected because he cannot give informed consent to participate, and because the trial sponsors will not accept parents' consent.
Tuesday, February 26, 2008
Family Conference with Rehab
Tuesday morning Mom, Dad, and Will attended a family conference convened by the rehab center. Will was present in person; Mom phoned in from the ICU; Dad phoned in from Bountiful. The center was so pleased with Will's progress and willingness to work that they proposed his stay be extended one week to March 11th. They said Will would not need an inpatient facility after that, but he would need 24-hour supervision, so they proposed he return to his family in Utah and receive outpatient therapy. Will's family would dearly love to have him close by.
Note added Friday:
The rehab center applied for Will's insurance to pay out-of-network benefits. They agreed, provided Will leaves the rehab center March 6th.
Note added Friday:
The rehab center applied for Will's insurance to pay out-of-network benefits. They agreed, provided Will leaves the rehab center March 6th.
Sunday, February 24, 2008
February 24, 2008
Gulp!!
Will's current challenge is learning again how to swallow. When the neural circuits that lead to your swallow mechanism have been decommissioned, you have to start from scratch to recreate the ability.
To help Will regain control of the process, the therapists are jump-starting him by stimulating his swallow muscles electrically and coaching him how to take over the process. They first tried the electrical stimulation Monday. On Tuesday he swallowed successfully for the first time. On Wednesday they let Barbara Sue and Lizzie try to feed him at meal times. The therapists thought the women were sufficiently patient and not trying to force progress that their involvement would be helpful. On Friday Will did 15 swallows in a therapy session before his muscles froze up and refused to work.
Speech
On Friday, while playing "Go Fish!", Will asked "Mom, do you have a nine?" Was he using backup circuits we don't know about? It's a mystery. But even an age ago, when he was in the ICU, Will sometimes clearly vocalized sentences, though most of the time complete sentences were unintelligible.
Exotic Diseases
Two weeks ago I mentioned that a neurologist intended to screen for rare diseases and metabolic conditions that are also known to cause bilateral thalamic stroke. The tests are not all done yet, but so far they are all negative.
Rate of Progress
During the week Will's mentor stopped in again. She was very encouraging. She offered to help Will study for his step 3 boards, so he doesn't get behind his class. We don't think he's ready to crack the books on that yet (I don't even know when they are), but the message the offer carries is very upbeat. She also told Will that he was at a point three weeks after his stroke that similarly situated patients she had known did not get to until three months after theirs.
Will's current challenge is learning again how to swallow. When the neural circuits that lead to your swallow mechanism have been decommissioned, you have to start from scratch to recreate the ability.
To help Will regain control of the process, the therapists are jump-starting him by stimulating his swallow muscles electrically and coaching him how to take over the process. They first tried the electrical stimulation Monday. On Tuesday he swallowed successfully for the first time. On Wednesday they let Barbara Sue and Lizzie try to feed him at meal times. The therapists thought the women were sufficiently patient and not trying to force progress that their involvement would be helpful. On Friday Will did 15 swallows in a therapy session before his muscles froze up and refused to work.
Speech
On Friday, while playing "Go Fish!", Will asked "Mom, do you have a nine?" Was he using backup circuits we don't know about? It's a mystery. But even an age ago, when he was in the ICU, Will sometimes clearly vocalized sentences, though most of the time complete sentences were unintelligible.
Exotic Diseases
Two weeks ago I mentioned that a neurologist intended to screen for rare diseases and metabolic conditions that are also known to cause bilateral thalamic stroke. The tests are not all done yet, but so far they are all negative.
Rate of Progress
During the week Will's mentor stopped in again. She was very encouraging. She offered to help Will study for his step 3 boards, so he doesn't get behind his class. We don't think he's ready to crack the books on that yet (I don't even know when they are), but the message the offer carries is very upbeat. She also told Will that he was at a point three weeks after his stroke that similarly situated patients she had known did not get to until three months after theirs.
Saturday, February 23, 2008
February 23, 2008
Will' recovery took a major turn for the better on Friday, February 22, 2008 when he was playing
"Go Fish," and said as plain as day, "Mom, do you have a nine?" The momentum carried over into speech therapy where he did 15 swallows with the aid of a bunch of lemon swabs and an e-stem stimulating the muscles in his throat. It also helped that he was awake. The techs and therapists have been saying they could do a lot more with the boy if he was not in the supine position. The thing that seems to precipitate upward mobility is the thought of throwing spit rags, rummikub pieces, or towels at anyone and everyone. He particularly likes throwing things at his siblings and girls from the ward. He does fake shots by throwing one direction and looking the other, but the big grin sort of gives his strategies away. The invitation by the speech t
herapist to stick out his tongue at everyone has not as yet been accepted. He did however, tell Lizzie to "shut up," another one of his remarkably articulate sentences. He is also pretty cagey. He wiggled out of his restraining belt and then threw off his blankets and bolted for the bathroom right in front of the nurse. She now double checks his belt for tightness. He is the envy of all the residents who are on call and come by to recall days when he was with them in "infectious diseases," or "cardiology." They look at him lying in bed being waited on hand and foot by beautiful women and wonder what it would be like. His residency supervisor comes by to remind him that she is standing in the wings ready to give him a few pointers on how to pass his next boards, so he knows this is only a brief vacation, better enjoy it while it lasts. As for the cause of this detour, they are still giving him aspirin therapy for the possibility of blood clots. All the leads Dr. Hall, the neurologist, has been following to try to pin down the exact source of the stroke have proved to be dead ends.
Sunday, February 17, 2008
February 17, 2008
Progress this week
Will is off the catheter. He is tethered to his bed at night by a large belt around his torso. The concern is that his balance is impaired and that if he got up in the night he could fall and injure himself. On February 8th he had a barium swallow evaluation. They make you drink a liquid containing barium, X-ray your mouth and neck, and check the X-ray to see if you aspirated any of the liquid into your lungs. On the 8th they judged he wasn't ready to take food by mouth. He had another swallow eval on the 15th and this time they think he's ready. They give him puree'd and thickened food that he can control better inside his mouth. The rehab staff is guessing he could be eating regular food by midweek next week. He would continue on tube feeding for sometime after that to make sure no new problems are created if there's any regression in swallowing.
Mental state
We think of each other's asleep/awake state as being on or off. If I shake your shoulder, you wake up, the switch moves to the on position, and everything lights up. Will seems to have a dimmer switch on his mind. Even when he's awake, some things may not be lit up. Earlier in the day or sooner after he's awake, he might give you the impression that his personality is like a child's. When he's been awake a long time you can see the complete Will there.
Emotional state
Will was evaluated by a psychologist. She thinks he doesn't yet fully understand what has happened to him because she saw no signs of depression, and depression is a step in the normal progression of a patient through a situation like this. I mentioned last week that on the Friday before Will seemed to understand completely what had happened to him and what the implications were. Barbara Sue and Becca had a similar experience with him last Sunday. Last Tuesday Barbara wrote some questions for him to answer about himself, like "Am I a returned missionary?", "Did I graduate from BYU?". They all had Yes/No answers. He answered "No" to "Am I a doctor?" The ladies tried to get him to admit he was teasing them, but he wouldn't.
I think what the psychologist saw is Will's optimism and positive nature. As time goes on we may see more indicators of what is going on in his mind.
He does tease the therapists. They call him the Fun One. From Barbara's observation they enjoy working with him because he interacts with them at a higher cognitive level than most of their patients.
With the above information in mind, I talked to Will's mentor on Wednesday. She is a doctor in Medical Education, the unit that supervises residents. She visited Will while he was in the ICU, and said she had been talking to him each morning since he was admitted to rehab. I asked about the prospect of Will's returning to his residency. She said Will's progress is very much day-to-day and the staff does not want to hold out a false hope to him when they are not yet sure he will qualify to come back. They are concerned about the damage to his cerebellum, which could affect his coordination. (One of the neurologists thought it was so minor that it would not be an issue in his recovery, but he may have been using a different standard of comparison.) The mentor also said they are concerned about where his speech ability will end up.
An uncharted future
Will's uncle, Jim Little (Barbara Sue's brother-in-law), is a neurologist at the VA hospital in Seattle. Barbara Sue called him the night we first found out what had happened, before we knew it was a stroke. He has been doing research for us, and as I mentioned last week, he found the rehab center Will is now in. He has surveyed the professional literature to see what is written about the recovery path of persons with bilateral thalamic stroke. He found one article, written in French.
I will keep reporting on what is happening, with an emphasis on what I think is positive. But in reality, even the doctors are unlikely to know if Will's recovery is proceeding as it should, as fast as it should, because there are so few other cases to compare it to.
Uncle Jim says it takes 6 to 12 months for a patient to achieve whatever amount of recovery from brain injury that he will ultimately achieve. So we're in this for the long haul.
Will is off the catheter. He is tethered to his bed at night by a large belt around his torso. The concern is that his balance is impaired and that if he got up in the night he could fall and injure himself. On February 8th he had a barium swallow evaluation. They make you drink a liquid containing barium, X-ray your mouth and neck, and check the X-ray to see if you aspirated any of the liquid into your lungs. On the 8th they judged he wasn't ready to take food by mouth. He had another swallow eval on the 15th and this time they think he's ready. They give him puree'd and thickened food that he can control better inside his mouth. The rehab staff is guessing he could be eating regular food by midweek next week. He would continue on tube feeding for sometime after that to make sure no new problems are created if there's any regression in swallowing.
Mental state
We think of each other's asleep/awake state as being on or off. If I shake your shoulder, you wake up, the switch moves to the on position, and everything lights up. Will seems to have a dimmer switch on his mind. Even when he's awake, some things may not be lit up. Earlier in the day or sooner after he's awake, he might give you the impression that his personality is like a child's. When he's been awake a long time you can see the complete Will there.
Emotional state
Will was evaluated by a psychologist. She thinks he doesn't yet fully understand what has happened to him because she saw no signs of depression, and depression is a step in the normal progression of a patient through a situation like this. I mentioned last week that on the Friday before Will seemed to understand completely what had happened to him and what the implications were. Barbara Sue and Becca had a similar experience with him last Sunday. Last Tuesday Barbara wrote some questions for him to answer about himself, like "Am I a returned missionary?", "Did I graduate from BYU?". They all had Yes/No answers. He answered "No" to "Am I a doctor?" The ladies tried to get him to admit he was teasing them, but he wouldn't.
I think what the psychologist saw is Will's optimism and positive nature. As time goes on we may see more indicators of what is going on in his mind.
He does tease the therapists. They call him the Fun One. From Barbara's observation they enjoy working with him because he interacts with them at a higher cognitive level than most of their patients.
With the above information in mind, I talked to Will's mentor on Wednesday. She is a doctor in Medical Education, the unit that supervises residents. She visited Will while he was in the ICU, and said she had been talking to him each morning since he was admitted to rehab. I asked about the prospect of Will's returning to his residency. She said Will's progress is very much day-to-day and the staff does not want to hold out a false hope to him when they are not yet sure he will qualify to come back. They are concerned about the damage to his cerebellum, which could affect his coordination. (One of the neurologists thought it was so minor that it would not be an issue in his recovery, but he may have been using a different standard of comparison.) The mentor also said they are concerned about where his speech ability will end up.
An uncharted future
Will's uncle, Jim Little (Barbara Sue's brother-in-law), is a neurologist at the VA hospital in Seattle. Barbara Sue called him the night we first found out what had happened, before we knew it was a stroke. He has been doing research for us, and as I mentioned last week, he found the rehab center Will is now in. He has surveyed the professional literature to see what is written about the recovery path of persons with bilateral thalamic stroke. He found one article, written in French.
I will keep reporting on what is happening, with an emphasis on what I think is positive. But in reality, even the doctors are unlikely to know if Will's recovery is proceeding as it should, as fast as it should, because there are so few other cases to compare it to.
Uncle Jim says it takes 6 to 12 months for a patient to achieve whatever amount of recovery from brain injury that he will ultimately achieve. So we're in this for the long haul.
Sunday, February 10, 2008
February 10, 2008
I flew back from Columbus this afternoon. I'm going to do a core dump on you.
How it unfolded
Will's boss called our home Friday afternoon, February 1, and said Will had not come to work, had not called in, and was not answering his cell phone. That was so unlike Will that they asked the police to break into his apartment. The police needed more time for him to be missing, so could we help? Barbara Sue got hold of his roommate. He found Will in his bed, seemingly having had a seizure. Will was taken by ambulance to the hospital at which he works. In his condition, and with no known cause to treat, the doctors thought he might be a goner. They tested for drugs, toxins, infection and ruled them all out. By 3 am an MRI showed stroke damage in both lobes of the thalamus. The thalamus contains the brain's sleep center, processes all sensory information from the body, and transmits commands from the brain to the body. So they had an explanation for their inability to arouse him and his unresponsiveness.
Strokes are uncommon in young, healthy people, but the most common cause of death from stroke is having a second one during the week after the first. So the doctors' focus became to find the cause of the stroke and to prevent a recurrence. They found two anomolies in his heart that could possibly produce a blood clot. They treated him with blood thinners and did scans for clots in his arms and legs. They tested his blood for hyper-coagulability.
Saturday to Tuesday
Will was admitted to the ICU around midnight Friday. I arrived at his room after 9 pm Saturday. He had awakened for the first time since the event just 10 minutes before. His arms were tied to the sides of the bed because he had been pulling out his IV's. He recognized me, called me Dad, and I told him I had come to visit and would be staying at his apartment and driving his car. He then reached by his side as if into a pocket, said "Keys ... keys ... keys," and so I gave him his keys. After much struggling with all the stuff on the key ring, he lifted it up, holding just the car key and apartment key. He then fell back asleep until Monday night or Tuesday morning. On Monday the neurologist tried to set my expectations. He said with this type of injury there was nothing to do but to wait for the patient to wake up on his own. The wait could be a very, very long time. He came back later and said he had consulted with doctors in the region who had more experience with stroke affecting the thalamus and they said the patient usually woke up after 5 to 7 days. Will first woke up for an extended period about 4 1/2 days after the event. When he woke up he was quite responsive. He could answer questions that had one-word answers and could obey commands (to raise a hand or foot), but was unintelligible when trying to speak in sentences. Tuesday the surgeons inserted a PEG into his stomach, which is a tube through the abdomen so he could be fed.
Wednesday to Sunday
Wednesday Will was awake a long time and was evaluated by speech, physical, and occupational therapists. He walked down the hall using a walker. Will's boss's mood changed from dejected to ebullient. He said they would move Will to the neuro critical care ward as soon as a room was available, and then after a week get him into a rehab facility. In the meantime, Will's uncle on Barbara Sue's side, who is a neurologist at the Seattle VA hospital, was trying to find a first-rate rehab facility for him. The nurses in the ICU got a call from a doctor they had never heard of asking if he could be put on the case. They asked me if I knew this guy. I had no clue, but I did suspect that Uncle Jim was working some magic. The guy came and did his eval when Will was awake and responsive. (He had sent his resident earlier. For the resident Will had been 95% asleep and unresponsive. This resident told me he thought Will would require months and months of rehab. But Will impressed the guy who counted.)
Wednesday night Will awakened and was disoriented. He pulled out his PEG. That caused quite a stir. Early Thursday morning the surgeons put it back in. His abdomen is now covered with a very wide band to protect the PEG. It's fastened by Velcro and I'm sure he could take it off easily. But now I think he understands and accepts why it needs to be there. They gave him a sedative for the surgery and he slept all day Thursday. Thursday night he said "I want to wake up" but he couldn't make it happen.
Friday he walked again using the walker. Two friends visited and he was extremely animated and responsive in expression to their conversation.
Will's insurance is predicated on using facilities in the health network he's a part of, but the really good facility is not a member. So the social worker spent two days trying to get his insurance to pay for rehab in the rehab star's facility. It is located in the hospital building, but is administratively separate. It only has 15 beds. At 4:30 Friday the insurance company accepted. By 8 pm Will had been transferred. This was 5 or 6 days sooner into rehab than originally projected.
Saturday Will got evaluated by the new unit. He was awake for one eval, asleep for one, and inbetween for the third. He did walk without using the walker. He was awake for a long stretch of time and very responsive (by expression, and sometimes verbally) to what was happening around him.
Family Support
Barbara Sue arrived in Columbus Friday morning. She says she's staying for the duration. Becca arrived early Saturday evening. She will leave the 17th. Lizzie arrives the 16th and will leave the 24th.
Quality of Care
Will is being treated in the hospital where he works. Doctors and residents all told me he was very well-liked and well-respected. He's been seen by two neurologists and at least two cardiologists. One of the administrators was assigned (or assigned herself) to be Will's case worker and to follow him through the hospital as he transferred to different units. They do not do this for other patients. Yesterday and today were her days off, but she came in just to see him. One of the doctors told me he was instructed to treat Will as a private patient, which means, I think, that the doctor him- or herself is to do the examination, rather than assign a resident to do it and then review the resident's report.
Was it really a blood clot?
One of the neurologists who treated Will is, I believe, the head of the hospital's Neurology Department. He is aware of rare metabolic diseases that can produce the same result seen in Will. One mystery is why both lobes of the thalamus were affected the same way to the same degree. (The neurologist said if only one lobe of the thalamus had been affected, the other lobe would have taken over and he would have been released to go home after one week.) Blood clots could affect both sides at once, and have done that to some, but to him the pattern looks suspicious. He thinks a stroke in a healthy 30-year-old might be more rare than some of these rare diseases. So he has ordered a large battery of tests to screen for them. He also was impressed Will was in rehab where he was. He said it means they think they can help him a lot -- their goal is to prepare patients to return to their homes. He also said he thought Will would be there about a month.
Does Will know what happened?
Friday night, during Will's highly awake and alert time, we told him in detail what had happened. He couldn't talk, but from his reaction he understood completely and concluded that the implications for him were all bad. But Saturday he was his usual cheerful and optimistic self. Through Monday of last week I wondered if there would even be a recovery. Now it's clear there will be a recovery. The only question is how far it will take him and how fast it will happen. Please continue to include Will in your prayers.
How it unfolded
Will's boss called our home Friday afternoon, February 1, and said Will had not come to work, had not called in, and was not answering his cell phone. That was so unlike Will that they asked the police to break into his apartment. The police needed more time for him to be missing, so could we help? Barbara Sue got hold of his roommate. He found Will in his bed, seemingly having had a seizure. Will was taken by ambulance to the hospital at which he works. In his condition, and with no known cause to treat, the doctors thought he might be a goner. They tested for drugs, toxins, infection and ruled them all out. By 3 am an MRI showed stroke damage in both lobes of the thalamus. The thalamus contains the brain's sleep center, processes all sensory information from the body, and transmits commands from the brain to the body. So they had an explanation for their inability to arouse him and his unresponsiveness.
Strokes are uncommon in young, healthy people, but the most common cause of death from stroke is having a second one during the week after the first. So the doctors' focus became to find the cause of the stroke and to prevent a recurrence. They found two anomolies in his heart that could possibly produce a blood clot. They treated him with blood thinners and did scans for clots in his arms and legs. They tested his blood for hyper-coagulability.
Saturday to Tuesday
Will was admitted to the ICU around midnight Friday. I arrived at his room after 9 pm Saturday. He had awakened for the first time since the event just 10 minutes before. His arms were tied to the sides of the bed because he had been pulling out his IV's. He recognized me, called me Dad, and I told him I had come to visit and would be staying at his apartment and driving his car. He then reached by his side as if into a pocket, said "Keys ... keys ... keys," and so I gave him his keys. After much struggling with all the stuff on the key ring, he lifted it up, holding just the car key and apartment key. He then fell back asleep until Monday night or Tuesday morning. On Monday the neurologist tried to set my expectations. He said with this type of injury there was nothing to do but to wait for the patient to wake up on his own. The wait could be a very, very long time. He came back later and said he had consulted with doctors in the region who had more experience with stroke affecting the thalamus and they said the patient usually woke up after 5 to 7 days. Will first woke up for an extended period about 4 1/2 days after the event. When he woke up he was quite responsive. He could answer questions that had one-word answers and could obey commands (to raise a hand or foot), but was unintelligible when trying to speak in sentences. Tuesday the surgeons inserted a PEG into his stomach, which is a tube through the abdomen so he could be fed.
Wednesday to Sunday
Wednesday Will was awake a long time and was evaluated by speech, physical, and occupational therapists. He walked down the hall using a walker. Will's boss's mood changed from dejected to ebullient. He said they would move Will to the neuro critical care ward as soon as a room was available, and then after a week get him into a rehab facility. In the meantime, Will's uncle on Barbara Sue's side, who is a neurologist at the Seattle VA hospital, was trying to find a first-rate rehab facility for him. The nurses in the ICU got a call from a doctor they had never heard of asking if he could be put on the case. They asked me if I knew this guy. I had no clue, but I did suspect that Uncle Jim was working some magic. The guy came and did his eval when Will was awake and responsive. (He had sent his resident earlier. For the resident Will had been 95% asleep and unresponsive. This resident told me he thought Will would require months and months of rehab. But Will impressed the guy who counted.)
Wednesday night Will awakened and was disoriented. He pulled out his PEG. That caused quite a stir. Early Thursday morning the surgeons put it back in. His abdomen is now covered with a very wide band to protect the PEG. It's fastened by Velcro and I'm sure he could take it off easily. But now I think he understands and accepts why it needs to be there. They gave him a sedative for the surgery and he slept all day Thursday. Thursday night he said "I want to wake up" but he couldn't make it happen.
Friday he walked again using the walker. Two friends visited and he was extremely animated and responsive in expression to their conversation.
Will's insurance is predicated on using facilities in the health network he's a part of, but the really good facility is not a member. So the social worker spent two days trying to get his insurance to pay for rehab in the rehab star's facility. It is located in the hospital building, but is administratively separate. It only has 15 beds. At 4:30 Friday the insurance company accepted. By 8 pm Will had been transferred. This was 5 or 6 days sooner into rehab than originally projected.
Saturday Will got evaluated by the new unit. He was awake for one eval, asleep for one, and inbetween for the third. He did walk without using the walker. He was awake for a long stretch of time and very responsive (by expression, and sometimes verbally) to what was happening around him.
Family Support
Barbara Sue arrived in Columbus Friday morning. She says she's staying for the duration. Becca arrived early Saturday evening. She will leave the 17th. Lizzie arrives the 16th and will leave the 24th.
Quality of Care
Will is being treated in the hospital where he works. Doctors and residents all told me he was very well-liked and well-respected. He's been seen by two neurologists and at least two cardiologists. One of the administrators was assigned (or assigned herself) to be Will's case worker and to follow him through the hospital as he transferred to different units. They do not do this for other patients. Yesterday and today were her days off, but she came in just to see him. One of the doctors told me he was instructed to treat Will as a private patient, which means, I think, that the doctor him- or herself is to do the examination, rather than assign a resident to do it and then review the resident's report.
Was it really a blood clot?
One of the neurologists who treated Will is, I believe, the head of the hospital's Neurology Department. He is aware of rare metabolic diseases that can produce the same result seen in Will. One mystery is why both lobes of the thalamus were affected the same way to the same degree. (The neurologist said if only one lobe of the thalamus had been affected, the other lobe would have taken over and he would have been released to go home after one week.) Blood clots could affect both sides at once, and have done that to some, but to him the pattern looks suspicious. He thinks a stroke in a healthy 30-year-old might be more rare than some of these rare diseases. So he has ordered a large battery of tests to screen for them. He also was impressed Will was in rehab where he was. He said it means they think they can help him a lot -- their goal is to prepare patients to return to their homes. He also said he thought Will would be there about a month.
Does Will know what happened?
Friday night, during Will's highly awake and alert time, we told him in detail what had happened. He couldn't talk, but from his reaction he understood completely and concluded that the implications for him were all bad. But Saturday he was his usual cheerful and optimistic self. Through Monday of last week I wondered if there would even be a recovery. Now it's clear there will be a recovery. The only question is how far it will take him and how fast it will happen. Please continue to include Will in your prayers.
Subscribe to:
Posts (Atom)