What To Do About His Swallow....?

I am in a quandary... not sure what to do. We went, yesterday, to see Bob's Ear, Nose, Throat doctor (aka Dr. Doom) and I asked him to take a look at Bob's swallow tests, which he did. According to Dr. Doom, everyone is wrong: i.e. the new swallow test is not better as his neurologist suggested, nor is it worse as his therapist has suggested. Doom thinks the test results from Feb. and June were "pretty much the same" and the only difference between the two tests is that the final recommendations are different. In February, the recommendation stated that Bob was capable of eating "applesauce consistency" for pleasure and practice while the June recommendation was "NPO" meaning nothing by mouth, not even applesauce. Dr. Doom believes that this is because the latest speech therapist is basically worried about liability and is scared shitless she'll be sued if Bob should choke or aspirate and develop aspiration pneumonia.

I did ask about the changes that I noted in the reports, i.e. going from "severe" to "mild", and Dr. Doom stated that this was only in the oral phase and the oral phase is "pretty much cosmetic" meaning Bob doesn't drool as much, looks better when swallowing, but once the food is past his mouth and into the throat there has been no change. That Bob still doesn't have much of a cough reflex and this could be quite dangerous should he aspirate....

So I asked the doctor for his advice, I mean, what do we do now? His advice, "off the record" and "if I were you", (I guess he doesn't want to be sued either) he would skip the therapy and "just wing it" at home. "Off the record," (again) if he were me, he would let Bob eat pretty much anything he wanted to "for pleasure and practice", as long as we were careful and knew the risks, and see what happens.  And he'd be happy to order another swallow video in six months to see if there were any changes. Though he wasn't optimistic. He said that if Bob was going to recover his swallow, there should have been more improvement by now. It doesn't look good, he said, he didn't want give me any "false hope".

I asked him if he thought continued therapy would help and again he wasn't optimistic but said "it wouldn't hurt", but he agreed that doing the "dry" e-stem without anything to swallow was a "waste of time" (well, I'm was right about something!).  He suggested I talk with the speech therapist and offer to sign a waiver stating I wouldn't sue her if Bob aspirated and maybe she'd continue the therapy. Either that or find a new therapist. He'd be happy to send a script wherever I wanted him too.

I know finding a new therapist sounds like the best option, but, the problem here is money. There are few clinics nearby that offer speech/swallow but none which offer financial assistance and at $30/visit, two or three times a week, there is no way we can afford it. The nearest place that offers assistance is a 45 minute drive and with wheelchair transport, make that a 2 hour drive because the transport requires a 45 minute window in addition to drive time, and with Bob having PT three times a week on the other side of town, I just don't think we could do it, time-wise it would be too stressful.

And the waiver? I don't know if a) the therapist will go for it, and b) if I really want to go back to that therapist. I do not like the way she treated Bob the last few sessions....

So, I'm leaning toward "winging it" as Dr. Doom said, but geez, is this the right thing to do? I know that the "best exercise" for swallowing is swallowing, but I won't have the e-stem, and is that necessary? And then there is that "false hope" issue.... will his throat ever recover? Then, I'm thinking, it might be OK to take a break from speech/swallow therapy for a bit, concentrate on his PT which he is doing pretty good at and maybe, after PT, see about the long drive to go swallow therapy......

There is better news with Physical Therapy, but I am running behind schedule and have no more time to write. I will try to post something tomorrow morning!