Robert's Progress in Boulder

It's been a tough week in Boulder. The minute we arrived on the 4th floor of the Boulder County Hospital where the inpatient unit of the Mapleton Center rehab program is located, Robert decided he did not want to be there and a pitched battle ensued for about six hours until Robert finally feel asleep exhausted and I crawled home to do the same. It was equally rough on Tuesday evening, resulting in a psychologist placing a 72 hour legal hold on Robert. Robert settled down on Wednesday participating in his rehab but didn't sleep well Wednesday evening and Thursday was again a difficult day with Robert refusing to take the antibiotics he needs for his pneumonia. All week it has been so painful to see Robert struggling like this. I just can't imagine waking up from a coma with a brain that isn't working completely having no idea why he was in a hospital or even where he was, much less why he was being kept locked up and being given all these intense drugs and now he's in another hospital with people telling him he can't leave when he thinks he's fine. My heart just breaks every moment.

Then on top of that he had a positive skin test for TB. I was just beside myself last night when I received that news after hardly sleeping all week. I had spent the entire afternoon unsuccessfully trying to convince Robert to take the antibiotic for his pneumonia and now I needed to convince Robert to move to a respiratory isolation room while they did more tests. He didn't even believe he had pneumonia and insisted he was completely healthy, demanding to leave the hospital. We did not want to sedate him again, as that is very counterproductive to his recovery from the brain injury and traumatizing as well; and I couldn't imagine letting him walk in his condition with pneumonia and possibly TB to boot. Some how though, much to my surprise and great relief, one of the doctors and I finally got through to Robert last night and he took his antibiotics and was willing to move to respiratory isolation while they ran more tests. I left the hospital again exhausted and sleep deprived at about 2 am when Robert finally fell asleep in his new room.

Today, Robert was much improved and more relaxed. It seems he is improving daily, which may have as much to do with getting all the intense drugs out of his system as it does recovering from his brain injury. Fortunately the second round of TB tests came back negative tonight and Robert was released from respiratory isolation. The plan has been for Robert to go on Monday, if he had made enough progress, to live in Bozeman, MT at the Sat Loka ashram with our friend Purna Steinitz and the community members there ... an ideal place for Robert's continued recovery. The TB scare almost put this on hold for quite some time. We are back on track though, and I am actually taking Robert out of the hospital tomorrow morning. Robert will stay with me in a hotel or with friends here in Boulder the next two nights before leaving for Montana with me on Monday.

I have been very disappointed in the Mapleton Rehab program. Other than the fact that I agree with their approach of getting him off all the drugs the doctors were giving him in Peru to control his behavior, I don't see that they have done much for him here at all. I liked the doctor, but she sees him 10 minutes a day. Some of the nursing staff on the unit appeared to have some experience working with brain injury patients, but most were completely inexperienced. He was getting about three hours of mediocre quality physical, speech, and occupational therapy a day and just left to hang out in his room the rest of the day. This was certainly not worth $1,400 a day (the discounted price I got by paying cash in advance -- normally $2000 a day). And that doesn't include the doctor's fees that we'll be billed for later. I would have been just as well off to rent a hotel suite and take care of Robert myself. Live and learn.

I think we will have a much better set of rehab services set up for Robert in Bozeman, from talking to the professionals we have lined up there. At the very least, he will be living in a very positive and nurturing environment with great people who care about him. Anyway, I am very eager to get Robert out of the hospital tomorrow and put that part of the medical system behind us.

In terms of Robert's current progress, using the Rancho Los Amigos scale of cognitive functionality, Robert shifts from level IV to level VII depending on whether he is rested and relaxed or tired and agitated. Level I is the lowest level of functionality and Level X is normal. Robert may even be at Level VIII at times. The main thing he is lacking is awareness or insight into his own condition, which is very common with head injuries. This however makes treatment and rehab a challenge as you find yourself constantly negotiating with a person who doesn't think they need any treatment or rehab. Robert does have glimpse of insight into his condition though and the doctor's feel this will continually grow over time, until he fully realized his condition and can willingly participate in completing the work of his rehab and recovery.

I'll write another post once we get Robert settled in at the ashram outside of Bozeman on Monday and I return to Boulder on Tuesday.

Lola and I want to continue to express our most profound appreciation to all of you who have supported Robert and us with so much kindness and generosity.

Love and blessings,
Fleet and Lola