Just spent a horrible morning at our ALS Center hospital. Fred got all the way to the operating room and the radiologist wouldn't do the procedure because Fred couldn't lay flat and breathe.
We told everyone we could think of in advance about Fred's respiratory status and that he needs to sit up to breathe -- neurologist/pulmonologist staff at ALS Center, where the order came from, called radiologist days before the procedure and he said it should be fine, told nursing staff in pre-op and OR nurse who came to transport him, wrote on his chart in big letters "Patient must sit up to breathe unassisted due to ALS low FVC=40"
No doc or anthesiologist came to talk to us in pre-op. Fred had his bi pap with him but they didn't suggest or offer that he use it. I was not in the OR of course and couldn't advocate for him. The radiologist just called me on my cell and said he couldn't do it.
When the radiologist came out he said he misunderstood our prior conversation, sorry about that, and there were no alternative procedures and nothing they could do for Fred.
The neurologist is contacting friends at other hospitals to see if there is another practice that could do the procedure. All suggestions welcome and appreciated. We live in DC Metro area but can travel.
We told everyone we could think of in advance about Fred's respiratory status and that he needs to sit up to breathe -- neurologist/pulmonologist staff at ALS Center, where the order came from, called radiologist days before the procedure and he said it should be fine, told nursing staff in pre-op and OR nurse who came to transport him, wrote on his chart in big letters "Patient must sit up to breathe unassisted due to ALS low FVC=40"
No doc or anthesiologist came to talk to us in pre-op. Fred had his bi pap with him but they didn't suggest or offer that he use it. I was not in the OR of course and couldn't advocate for him. The radiologist just called me on my cell and said he couldn't do it.
When the radiologist came out he said he misunderstood our prior conversation, sorry about that, and there were no alternative procedures and nothing they could do for Fred.
The neurologist is contacting friends at other hospitals to see if there is another practice that could do the procedure. All suggestions welcome and appreciated. We live in DC Metro area but can travel.
