[QUAD-L] Looking for a hospital

[GHenry1]

Looking for some information for my husband:     Glenn is a 40 year C5-6 quadriplegic of good general health.  8/15/06 he underwent cystoscope 6 years after last scope that read normal.  Glenn started w/new urologist at same group where his original urologist had retired.  8/15 cysto saw mass in bladder and deemed that bladder no longer proved workable after 40 years w/Foley caths.  Cysto performed w/spinal that went without incident.  However, urologist needed to use scope to place the cath properly.      8/22/06 Glenn started to bleed profusely and pass numerous blood clots around cath.  Little urine passing through cath but it too was bloody.  Wife tried to irrigate cath unsuccessfully. Wife then removed cath which was visually clogged with blood clots.  Wife tried to insert new one.  Not successful as when it was in place, (not easily), it would not drain, and blood & clots passed around new cath too.  (Note: wife has inserted Foleys for 25 years w/o difficulty.)   Called urology service, went to hospital on their recommendation by ambulance.  In ER cath removed, 28 3-way cath inserted, gravity irrigated and manually.  Six hours later Glenn sent home by ambulance w/irrigation solution and high hopes.  Upon turning Glenn on bed to prepare him for night she saw puddles of blood/clots/urine under him and returned to hospital in same ambulance.   8/23/06 urologist forcefully irrigated cath ... etc.  8/24/06 second cystoscope performed. Urologist reported that culture showed malignancy found in bladder, contained and early state.  Urologist reiterated and explained need for cysectomy and ilio conduit.      Placement of working spinal cath was 1 hr. operation due to Glenn's compressed discs due to previous spinal column injury.  Urologist st'd that he saw no source of bleed, again cauterized biopsy sites, place cath, again using scope.  Urologist told wife that he couldn't keep placing caths by scope.           8/24 post-surgery to 8/27 Glenn ran fever.  Had had chills in Post Op, was warmed by using heated blankets, came to room with 4 blankets over and 1 blanket under him.  Fever diminished somewhat with use of Tylenol.  Glenn asked to have blankets removed.  Fever ranged from 100-102.8 F., sometimes Glenn shook with chills, sometimes not.  Glenn asked to have a fan or cooling blanket, believing that autonomic hyperreflexia might be source and that by cooling is body core he could reduce his fever.  Wife used ice baths, later fan was brought from home and on 8/27 fever came down to low grade-normal range and where it remains today.   Glenn needs cystectomy (early malignancy found by first cysto) and ilioconduit and stoma.  Glenn needs to find facility familiar with high level quad care.   Urologist told us today that he will not operate on Glenn and that Glenn would be better served in facility outside of Lancaster County.  Urologist told us that we could search the Internet to find both.    Today Infectious Disease doc ordered another ultrasound of kidneys today to determine what spot was shown on L. kidney yesterday by C-scan.  He st'd that he'd tell us results on 8/29.   What direction to take?  Which facilities offer quality urological care for high level SPI injury quads found within limited geographic area that Glenn can travel?   We are in Lancaster County, Pennsylvania.   Wife asked what to do if reoccurrence of bleed/clots when they get home.  Go to ER? "I guess so" was Urologist response.        How & Where can we start research?