Robert's in Montana!

Robert and I arrived at our friend Purna's ashram outside of Bozeman, Montana yesterday. Transitions are somewhat difficult for Robert so the first evening was a little difficult with Robert uncertain about wanting to be there, but today Robert seemed to relax more about being there. Robert has friends there and everyone loves him and wants to support his recovery. Robert went to his first session with the speech/cognitive therapist there this morning. Her name is Cathy Fisher and I like her a lot. Robert said it was tolerable, which is saying a lot for him at this point. We said goodbye this afternoon at the Bozeman airport, as Robert and one of the members of the community there dropped me off for my flight back to Denver. I'm going to miss being with Robert, but I think the ashram is going to be an ideal place for Robert to continue his recovery for now. Robert was on the phone with his mom, Lola, today and she was very relieved to know Robert had arrived safely at the ashram and was settling in there. Robert got a drawing table set up in his room there today, so he can begin working on his art. Robert still has challenges, but he seems to be getting a little better each day. Please keep Robert in your thoughts, prayers and practice in support of his full recovery.
So many thanks and blessings from Lola, Robert and me,
Fleet

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

Robert's Expenses & Fundraising Update

As of today, Robert's overall expenses with the travel and everything have reached approximately $50,000. The amazing kindness and generosity from so many wonderful friends, family and sangha has raised approximately $22,500 for Robert's medical fund. I have put the remaining $27,500 on credit cards. At the BCH Mapleton Center Robert expenses will run somewhere between $2000 and $2500 a day. We are not sure how long Robert will be on inpatient status, but I can't imagine it will be less than 10 days. Now that Robert is here in the states, we will put in his applications for SSI and Medicaid, but these will be very difficult to get, if possible at all. We are moving forward with getting Robert the care he needs though, trusting that somehow this will all work out. Lola and I cannot begin to appropriately thank all of you or find the words to express the profound gratitude we feel for all the love and support coming our way from so many wonderful people. Thank you, thank you, thank you and many, many blessings,
Fleet, Lola and Robert

Robert is back in Boulder!

Robert and I safely arrived back in Boulder today after a fairly harrowing journey. We were accompanied by a wonderful Paramedic based in Houston named Joe Barnes. I am so glad I decided to bring Joe along. He was indispensable and accompanied us all the way to the the hospital in Boulder before returning to Houston. Robert was admitted today into the Mapleton Center inpatient rehab program at the Boulder Community Hospital (BCH) on Broadway and Balsam. They recently moved the inpatient rehab program from the Mapleton Center at 4th and Mapleton to the main hospital on Broadway. It was a difficult trip with Robert on drugs that both sedated him and left him very agitated and jumpy and even hallucinating at times. I'm not sure how the clinic in Lima felt this was the best combination of drugs.

It was quite an adventure getting through the very complicated and crowded airline check-in, airport tax payment, and immigration processes at the Lima airport. Having Robert in a wheelchair helped a lot, although it was quite a task to keep him in the wheelchair and not over stimulated as we went through all this. The six hour 15 minute flight, 12 midnight to 6:15 am was very difficult. The plane was packed. Robert, who's a big guy, couldn't get comfortable enough to sleep even though he was tired and sedated, so this left him agitated and wanting to get up all night. Suffice it to say I didn't sleep. We couldn't get Robert to take any more medication until shortly before arriving in Houston. Getting through immigration and customs in Houston was another adventure, somewhat facilitated by wheelchair transport.

Robert was calmer and slept most of the 2 hour flight from Houston to Denver. He seemed even more relaxed on the drive to Boulder from the Denver airport. Nonetheless, upon arriving at the 4th floor rehab center at BCH, Robert decided he didn't want to be there and fairly loud pitched battle of wills ensued for 5 hours with Robert, I and the hospital staff all involved until Robert finally fell asleep around 4 pm. Having not slept in over 30 hours, it took everything I had to hang in there with it. Robert was calmer tonight after sleeping a couple of hours, but still not happy about being in the hospital.

I am very relieved though to have Robert at a facility where I know they will get him on the right program for his recovery and rehab. At the Mapleton Rehab Center they are committed to getting him off all the powerful sedative and psychoative drugs they had Robert on in Peru and supporting his recovery through effective rehab. At this point, we don't know how much of Robert's challenging behavior is related to his brain injury and how much is the result of the powerful drugs they have had him on in Peru. Robert's doctor at BCH is Dr. Julie Stapleton. She has headed up the rehab program their for over 20 years and has really good reputation nationally. I met her for the first time today and felt very comfortable with her.
Many thanks again from Lola, Robert and I to all of your for your amazing support, kindness and love,
Fleet

Latest on Robert

This has been a tough week for Robert. He doesn't want to take the medications they are giving him at the clinic in Lima. He feels they are making him sick and he's probably right. Evidently they forcibly medicated him on Tuesday, holding him down for an injection. I can only imagine how violated and traumatized he feels by all of this on top of everything else. They are treating him with tranquilizers, anti-psychotic drugs, etc. down there because they don't know another way to work with him. He doesn't understand why he needs any meds. I'm not sure how much insight he has into his situation and brain injury challenges and related behaviors. The good news is that he has been clearer on the phone every time I have spoken with him this week. I encouraged him to try to accept the situations as best he can for the next few days until I can get him out of there. He was more relaxed today. I am flying to Peru on Saturday and will hopefully return with Robert on Monday morning to Boulder, Colorado, where Robert will enter the Mapleton Rehabilitation Center, an excellent facility for brain injury treatment and rehab. Please keep us in your practice and prayers for a successful and safe journey.
Blessings,
Fleet

Change of Plans

This past Friday, April 4th, the anniversary of my teacher, Trungpa Rinpoche's passing (parinirvana), I was preparing to leave for Peru the next day to bring Robert back here to Colorado to be evaluated at the Mapleton Rehabilitation Center in Boulder. I was and am feeling a great deal of urgency to get Robert back here, because in Lima they are trying to control his brain injury related behavioral issues with anti-psychotic drugs and other tranquilizers. This is contraindicated for Robert's recovery. He needs to be in a quality rehab program and not on these drugs.

I received a call from Peru that evening letting me know that Robert's doctors at the clinic in Lima had decided it was too risky for Robert to fly commercial back to the U.S. with me, given that he still has episodes of confusion and agitation, and that they would not authorize the trip. I spent the rest of the evening until about three am on the phone with doctors, air ambulance services, air paramedics, and so on trying to come up with a new plan. Air ambulance was quickly ruled out ($60,000 - $80,000). I did find an EMS organization in Houston, very experienced in international medical evacuation and travel, both air ambulance and commercial. I had it set up for the head of that organization, Joe Barnes, a very experienced Critical Care and Air Paramedic to fly down with me and bring Robert back. He was confident that we could do it, even without the doctors' authorization and without informing the airlines. Talking with friends and family here we all decided, I would try to have one more conversation with the doctor at the Mapleton Clinic here before deciding to go or not before leaving for the airport at 8:30 am in the morning.

I got up at 7:30 am with less than four hours sleep and started trying to reach the doctor at the Mapleton Rehab Center. Due to poorly conveyed messages by the staff there, the doctor never really got the reason for my call and didn't call back until 9:30 am. Confused and exhausted I decided to put the trip off a week. I had to postpone it an entire week, because unless I fly over a Saturday, the fare's triple. With the paramedic's fee and three airfares, the trip is going to cost approximately $6000. If I we don't travel over a Saturday, the cost would go up to $12,000.

I still don't know if I made the right decision. I spent a good part of Saturday beating myself up for not making the right decision and then finally fell into bed exhausted and slept 14 hours.

At any rate, we now have a new plan. I will fly down to Peru on Saturday, April 12th.
The paramedic, based in Houston, will join me on the Houston to Lima leg. The paramedic and I will then fly back with Robert, leaving Lima at 11:45 pm on Monday, April 14th and arrive in Denver at 9:07 am on Tuesday, April 15th. We will have a 6-hour flight from Lima to Houston and a 3-hour flight from Houston to Denver. Arriving in Denver, we will go directly to the Mapleton Rehab Center with Robert. Then the plan is still for Robert to go and live at the Trimurti community ashram with our friend, Purna, outside of Bozeman and continue his rehab program with outpatient services in Bozeman organized in collaboration with the Mapleton Rehab Center in Boulder.

I spoke with Robert by phone twice today. He was more clear than on any previous phone call. I'm pretty sure that if I'd gone, we could have successfully got him back this week, but so it goes. We'll get him back here next week.

Lola and I wish to continually express our profound appreciation to everyone--family, friends and sangha--who have been so kind, supportive and generous since this all began back on February 28th.
Love and blessings,
Fleet

Bringing Robert to Colorado

After a lot of confusion and anxiety, we finally have what looks like a good plan in place for Robert. I am flying to Peru again tomorrow (Saturday) and will return to Colorado with Robert on Tuesday if all goes well. Robert will go to the Mapleton Rehabilitation Center in Boulder, which is part of Boulder Community Hospital: http://www.bch.org/aboutbch/mapletoncenter.cfm. This is and excellent rehab facility for brain injury under the direction of a wonderful physician named Julie Stapleton, M.D. Robert will be at the Mapleton Rehab Center for 5 - 7 days for a complete evaluation and rehab program development. Then I will fly up to Bozeman, Montana with Robert where he will live at the Trimurti community headed by my very close friend, Purna Steinitz, who is also a very close friend of Robert's. The Trimurti community ashram is about 15 miles outside of Bozeman and will be an ideal living situation for Robert where he can return to the normal routines of life in a very nurturing and structured setting with wonderful people who all know and love him. I have discussed all this extensively with Robert's doctors in Peru and with Dr. Stapleton and other program directors at the Mapleton Center, and everyone agrees that this is an ideal living arrangement for Robert. Bozeman doesn't have a rehab center with all the services of the Mapleton Center here in Boulder, but there are individual practitioners in the area who provide the same services. With the assistance of the Mapleton Rehab Center here in Boulder, we will put together a team of practitioners that Robert will see in Bozeman on an outpatient basis.
We of course considered having Robert stay in Boulder and go to the Mapleton Center on an outpatient basis, but with our home organized around Denise's hospice care, we couldn't really bring Robert here and while we considered setting up an apartment for Robert in Boulder with dedicated caregivers, the ashram in Boulder will be a much better and safer living situation for him. Robert will also have dedicated companions at the ashram as needed as well as the loving attention of the whole community there. Robert will have his own room at the ashram and be able to work on his art and begin to take on some work responsibilities at the ashram as appropriate. The diet at the ashram is also very healthy, with wonderfully prepared organic food.

The week of evaluation at the Mapleton Rehabilitation Center will be very expensive, but we feel it is really important to get Robert fully evaluated and make sure we get the best resources in place for his recovery and rehabilitation. Once Robert is in Montana, he will apply for Medicaid there, but it may be difficult to get it as Robert is physically able to get around fine.

Robert's mom, Lola, is also very happy with this plan even though it means Robert will be far away. Lola, like all of us, just wants Robert to be in the best possible situation for his recovery. Lola and I cannot begin to express our profound gratitude to everyone who has been so kind and supportive, for everyone's generosity, and to our friend Purna and the Trimurti community for inviting Robert into their community and making this very generous commitment to Robert's recovery.
Love and blessings to everyone,
Fleet & Lola

Robert's Medical & Other Expenses as of 3/31/08

Robert’s Medical & Other Expenses
As of March 31, 2008

Robert is currently being treated at the Clinica Ricardo Palma in Lima, Peru:
http://www.crp.com.pe/

Cusco Medical Clinic Bill (2/28 to 3/26): $14,361

Pharmacy, Fees, & Other Medical Related Expenses: $2,371

Advance Deposit for Lima Medical Clinic (3/26 to …): $3,617

Robert’s Travel Expense, transfer to Lima Medical Clinic: $1,040
(accompanied by Lola, doctor and friend)


Living Expense for Robert’s mom to stay with him in Cusco & Lima: $1,500
(Lola usually lives in the Sacred Valley and
supports herself producing hand-made clothing
and specialty food items)

Fleet’s Travel Expenses for Peru Visit (2/30 to 3/13): $4,169
(includes airfare, hotel and meals)

Legal Expenses paid to date: $3,000
(lawyer’s fees to pursue criminal investigation)
___________

Total Out of Pocket Expenses to date: $30,058.00


Current daily expense at the clinic in Lima: approximately $500 per day or $3,500 per week.

Legal Expenses: We are committed to spending another $7000 in legal expenses. The only way to make a real criminal investigation happen in Peru is to hire a lawyer to push it and to pay for much of the investigation expense. The good news is that with the help of pressure from the U.S. Embassy and Senator Ken Salazar’s office a real investigation is happening and we expect there to be arrests soon. The police who were involved in the initial cover-up and who witnessed Robert being beaten without doing anything to stop it are also being investigated. We will of course consider a lawsuit against the owners of the discothèque whose employees assaulted Robert, but we have no idea of our chances of being successful or actually winning damages or any compensation through such a lawsuit in Peru.


Flying Robert up to Colorado as soon as possible: $2500
(I will need to fly down, stay over night, and accompany Robert on the flight back from Lima to Denver the next day)

Note: We need to get Robert to the best possible brain injury rehabilitation center as soon as possible to avoid as much as possible serious lasting side effects from his very severe brain injury and apparent permanent damage (scar tissue in the frontal lobes). These kinds of rehabilitation services are not available in Peru.

Robert’s Care, Treatment and Rehab, and Living Expenses in Colorado: We have no idea at this time. Robert will need to apply for SSI and Medicaid, but this is a very difficult process and there is no guarantee he will get it. In patient care at the Mapleton Rehab Center in Boulder or at the Craig Hospital in Denver (one of the best rehab centers for brain injury in the country) will be very expensive, but I don’t have the numbers yet. Outpatient therapy will be very expensive as well, and in this case, we will have to set up some kind of living situation for Robert with caregivers for an indeterminate period of time … months, a year. We have more questions than answers at this point. I will provide more information as soon as we have it.

Fundraising: So far through your wonderful generosity we have raised approximately $4,800 through the Chip-In feature on this blog along with a matching grant of $2,500. I know others have contributed through the Community Trust, but I don’t have those numbers yet. On behalf of Robert and ourselves, Lola and I want to thank all of you from the depths of our heart for your kindness and generosity. Please keep Robert in your prayers and meditations.

Love and blessings,
Fleet and Lola

Letter from Lola, Robert's Mom

Especially for those of you who can read Spanish, I am posting this beautiful letter I received from Robert's mom, Lola, this evening. I wanted to share the strength Lola's words have given me with all of you. I will attempt a rough translation below.

Querido Fleet. los medicos pueden decir mil cosas, no?, lo unico que te pido es qie no te preocupes, por lo menos trata de no preocuparte demasiado, tenemos que vivir el dia a dia con esto y se que es una prueba muy dificil, dolorosa, pero que tenemos que saberr sobrellevarla, a veces me siento como que estoy viviendo al filo de dos abismos y que cualquier rato puedo caer pero siento que algo mas fuerte que mis propias fuerzas, algo mas alla de esta realidad me soporta y alienta, y entonces se qie todo esta bien.............porque Robert va a volver a ser ese muchachio feliz que siempre es, ya lo veras, acuerdate tendremos d e nuevo su sonrisa y ya tenemos la dicha de tenerlo con nosotros verdad? confia piensa que es asi y lo lograremos, miralo lo mas que puedas en tu mente, sano fuerte lleno de animo, y lo lograremos porque el puede y nosotros tambien. Te amo Fleet y se que estas pasando momentos muy dolorosos con Denise pero
esa es la voluntad de Dios y solo nos queda resignarnos, ademas es solo que ella se adelanta al tomar el tren pronto o mas tarde nos tocara tambien partir............verdad?Cuidate y recibe mi cariño de siempre:Lola

Dear Fleet,
The doctors can say lots of things no? (referring to the negative prognosis we just received about Robert's brain injury and resulting side effects). The only thing I ask is that you don't worry, or at least try not worry too much. We have to live day to day with this. I know this is a very difficult and painful test/challenge, but we have to find a way to get through it. Sometimes I feel like I am living on the edge of two abysses and that I could fall at any moment, but then I feel that something more powerful than my own strength, something beyond this world, is supporting and encouraging me, and then I know everything will be all right. Because Robert will once again be the happy young man he has always been. You'll see ... remember that we again have his smile, and we have him with us, right? Trust and believe this to be true, and it will. Visualize or hold Robert, as much as you can, in your mind healed, strong and full of spirit and this will be achieved, because Robert can and we can too. I love you, Fleet. I know you are going through very painful times with Denise, but if this is the will of God, all we can do is surrender. And besides, Denise is just taking this train ahead of us that we will all be taking sooner or later, isn't that so? Take care of yourself. Warmest regards always, Lola