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.