Got all the way to the operating room and dr. wouldn't put in PEG -- advice?

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dianepage

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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.
 

Franklin

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I really hope things work out.

Maybe others, who want a peg installed, will realize you can't always put it off and then decide to get it done on your time table.

ALS is a disease that can dictate .
 

BrianD

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I think that you're doing exactly what you should be doing, trying to find another surgeon. I have heard of at least one person using their bipap during a RIG procedure after getting the ng tube in. I wish you the best of luck and prayers you can find a willing surgeon.
 

dianepage

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Yes, in hindsight I would suggest that anyone who is experiencing even the beginning of swallowing difficulty push for extra appointments to monitor breathing volume. The other thing I suggest is using a peak flow meter at home to monitor between appointments.

Although we started trying to schedule pretty soon after swallowing difficulties were apparent, it was concurrent with a really rapid decline in breathing ability that my PALS initially didn't "feel", was hard to get ahead of, and surprised even the clinic docs.
 
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