To add to Kris's notes

Arlene here. Yes, we expected to hear that Bill was sliding downhill fast and there was nothing more they could do, but Dr. Bronstein indicated Bill is not at that point, despite the intubation.  He thinks Bill's lungs have been the source of many problems, not his heart, and he thinks the periods of dementia may be due to CO2 buildup (from insufficient air exchange in breathing) rather than over-sedation or the scleroderma, -- but he's not sure.  Bill has interstitial fibrosis in his lungs (if I got that straight).  He told us the rheumatologist may not have been as involved as we expected probably because the treatment being given (immuno-suppressive medication and prednisone) is pretty much all they can do.  He will put in an order to get the rheumatologist involved.  I think I heard him say they can't do anything about the advanced Reynaud's, and that giving him drugs to open arteries and veins to counter the Reynaud's is not appropriate because  - I think - it can cause blood pressure problems.  I may not have this quite straight.

He said his nutritional status was not good -- albumin(?) is low and they're working on this.

We said more than once that we want Bill to be kept as comfortable as possible - meds for pain and anxiety -  and he said absolutely yes, and that he will pass this message along to the next ICU doc who will replace him when he rotates out in 2 days.  We mentioned 'palliative care' - where comfort is paramount but the disease is still being treated - and he nodded in assent.  We need to be sure these orders follow Bill out of the ICU.

Dr. Bornstein made the point that the disease is not curable, Bill will continue to be severely disabled, but the course can be erratic, with rapid bursts and periods where it is smoldering but not active, and that the treatments can hold it at bay for periods of time.  He was surprised to hear how less than a year ago Bill was teaching full time and apparently in good health and how rapidly he deteriorated during the summer, and that the illness was not diagnosed until September.

He encouraged us to untie Bill's arms while we're visiting (they are loosely tied so he can't pull out the ventilator tube) and to move them around, play music, read to him. He said progress towards being able to be moved to a nursing facility was lost with the loss of lung function and now lack of movement in the ICU (even dialysis is done at bedside), but although the disease cannot be stopped, once off the ventilator he will be out of the ICU and can start working again with the physical therapists, sit in the cardio-chair, get ready for a nursing facility.  If breathing/air exchange continues to be a problem, a permanent ventilator is possible (can't think of the name!) but it would eliminate his ability to talk.

He said Bill's kidneys will never recover and dialysis will be a necessity from here on out.  Kidney failure is not common with scleroderma.  He said the swallowing problem is due to the scleroderma.  Although this all sounds grim, I am relieved to know Bill's pain and anxiety can be alleviated and, - dare we say, - there is hope that he can have enjoyment from music, from watching movies, from reading or listening to books, from being in the presence of his children and friends.