Before I start, I'm normally the NHS' biggest fan, but it's been a long and difficult day, in fact it's been a long and difficult month. And this story's not short.
H has a congenital heart defect, and for the last 4 years they have been monitoring his valves as they are leaky to see if they have got worse. About six months ago, they said they were v leaky and thought he might need surgery, but couldnt find his records to see if they had got worse. So he had more tests and they decided he did need surgery (despite then losing the intermediate records!)
So, back in December he goes on the waiting list for an aortic valve replacement, with expected waiting time 3 months, and expectation it would be around Christmas. Having not heard anything throughout Oct and Nov we assumed it would be after Christmas - not so, on 28th November at 5.20 pm (!) he got a phone call asking if he could come in on 15th (today) for the op tomorrow. So he's spent 2 weeks panicing clearing everything with work, I've done the same and we've had family organised to visit and help look after him when he's out.
So, he goes to his pre op last week. They discuss everything, do all the tests and all is fine for today. The valve replacement is listed as the procedure. He goes in with his dad at 2pm today, I get there at 3.30 having run some errands, to find theyve done most of the tests and he's joking with the nurses about having to shave his chest for tomorrow. About 6pm one of the surgical team comes to see him, and gives him a document about the procedure he's having and a consent form - but not for a heart valve replacement but for a T.O.E. which he'd never heard of before, and asked him to read it and theyd be back if he has any questions. So when they return, H asks why this has never been mentioned before, and if this is just a pre check. Erm, no, it appears this is what he's booked in for. So he explains the situation to the dr/surgeon (she didnt introduce herself) so she suddenly decides that "it had been shown to someone higher and they need to do this because theyve suddenly decided another valve is leaking more than it should and they want to check it" but she tries to get hold of the surgeon and his PA to find out if he's booked in for the valve replacement later in the week.
In the interim the anethisatist comes to do her bit and is equally mystified. The staff nurse thn comes back, and H is (unsurprisingly) getting more and more frustrated annoyed an agitated - when it turns out the nursing staff still have him registered for the valve replacement op and not the TOE, and they have no idea what is going on either. So she goes and finds another member of the surgical team to find out precisely what is going on. The guy who comes also has no clue, says H is down for the TOE tomorrow but is not in the surgical calender for the valve replacement. The surgeons PA has gone home (unsurprisingly since its now 7.30) and the surgeon is still unavailable - but he cannot find in Hs notes who, why and when they decided to do this TOE procedure (contradictory to cmments from the other member of the team). Oh and he's not actually booked in at a time to do it, theyre going to fit him around the other ops that are going on - so currently it may be 11am or 2pm! And they still havent got hold of the surgeon to definintely confirm hes not having valve replacement this week.
So H has psyched himself up for this major surgery, only to find out he's not having it and is likely to be back on the waiting list for the valve (or valves) replacement surgery. So our lives are even more up in the air than ever. He may;
a) Be home tomorrow having had this proceedure and be back on a 3 month waiting list
b) Be home wednesday having had this procedure, talked to the surgeon and be back on a 3 month waiting list
c)Have this procedure and stay in for valve replacement sometime this week
d) nothing or anywhere in between!
I'm struggling to cope with this, so who knows how H is feeling. I just wish he knew precisely the plan so he can mentally try to adjust again, at the moment he's in limbo.
(sorry, it really was long)
