Here are some general tidbits. Remember, I'm not a medical expert, but maybe this info will provide a base from which to ask more questions. It's from PubMed database, Merck Manual of Medical Information, and Mayo Clinic.

Weight Loss is linked with kidney disease, scleroderma, dialysis, and certain prescription drugs that interfere with absorption of nutrients, so Bill could be losing weight for any or all of these reasons. Merck recommends 5000 calories a day to increase weight after malnourishment. This amount must be reached gradually because the intestinal tract shrinks during weight loss and will not tolerate many calories at first. If the tube feeding isn't providing adequate nourishment, and clearly it's not, then IV feeding may be added through a large vein (usually under the collarbone). It might help to ask what Dr. Kohlberg's long-term plan is for weight gain or to suggest IV feeding and continued calorie increase. I like Betsy's idea of talking with a registered dietitian, too.

Standard intake for a normal sedentary man is about 2000 calories a day, but this varies dramatically depending on a given person's metabolism. Bill's body is accustomed to exercise and is fighting severe illness--both would suggest that he needs more than 2000 per day just to maintain his weight. Certain vitamins must be supplemented for a person with kidney problems, so it's important that the standard tube feeding solutions ("total parenteral nutrition solutions") are modified for a kidney patient. Merck emphasizes that everyone on dialysis (even those with normal outpatient lives) should be weighed daily.

Tube Feeding can be done at home if necessary. Some hospitals (e.g., Mayo, but probably several in LA too) train family members how to feed a patient through stomach tubes at home. With a doctor's prescription, Medicare also provides physical therapists, home health aides, and nurses that visit patients at home. I know Bill isn't ready to come home yet, but it might become important in the future.

Infection from Dialysis "is a constant risk" for two reasons: 1) the catheter is in place for a long time, and 2) the feeding solution contains glucose, in which bacteria grow easily. Bill has added vulnerability because of the drugs that suppress his immune system.

Outside Care Management sometimes helps various specialists coordinate with each other, but I have reservations: cost, interference, quality, managers trying to take over. (It's important to keep ultimate authority in your hands--Kris, Arlene, Abby--and not let any care manager take over Bill's medical decisions.) Inside care management would be better--someone from Kaiser to organize test results and care plans. Bill's social worker at Kaiser or his primary care physician from before hospitalization should be able to say who is supposed to provide consistent medical supervision for a coordinated team effort. If they can't, or if that person won't talk with you, Kaiser should have an ombudsman listed on the hospital directory who you can consult for help at no charge.

Medicare vs. college insurance - If Bill's not covered by Medicare yet, you can call Medicare at 1-800-633-4227 to get him enrolled right away using his social security number. Then, and maybe even now by virtue of his age, whatever insurance Bill has through the college will be considered secondary. So, for example, Medicare would pay 80% of a particular bill, and the secondary insurance would pay the remaining 20%. In a nursing home, Bill will have the 100 days from Medicare, and then the question will be does his college insurance cover nursing care, and if so to what extent. They might cover 80% of it, then Bill would have to pay the remaining 20%. Or they might not cover it at all. Worth checking ahead of time cuz this stuff gets pricey real quick.

ESRD Network Organizations are local teams of kidney care experts paid by the federal government to check and improve kidney care given to Medicare patients. ESRD stands for end-stage renal disease--don't worry, the "end stage" part only refers to a patient whose kidneys are unlikely to regain normal function and will therefore need to be on regular dialysis for some time. Your ESRD Network for Los Angeles is the Southern California Renal Disease Council at 800-637-4767. They investigate problems with kidney care staff or dialysis centers, but they also provide info about kidney care and referrals to various medical professionals.

My heart is with all of you. Feel free to "assign" me any topic or task.
Janet