It's taken me flippin' ages to work out how to sign into my blog so now I've finally cracked it, I will write the update before I'm signed out and completely forget again!

Just over a month ago I was admitted back into hospital to trial NJ feeding rather than using my JEJ.  I finally got the tube placed on the third day and for once, it wasn't a traumatic experience!  I was given 7g of Midazolam which was, this time, enough to sedate me.  A very high dose apparently and weighing only 37kg the nurses and endoscopist were somewhat shocked as to how much was required for me to shut up enough to get the mouthpiece in :-)  The placement took less than 2 hours and I began feeding again that night starting at 10ml/hr.  I was obviously high risk of refeeding syndrome again due to my BMI of 15 but amzingly (and largely thanks to 3 days of Pabrinex) all was well.  My blood pressure did drop to 81/50 a few times during my stay but on the whole things went well and I left boasting a 2kg gain - after only 2 weeks!

I also saw the pain nurse during my admission and discussed my stomach spasms, intestinal pain and dislocations, and was prescribed Oramorph as required and MST twice a day (along with my usual Codeine and Paracetamol - interestingly I'm not allowed a full dose of Paracetamol due to being under 50kg; I've never weighed over 50kg in my life so all this time I'v been 'overdosing' so I now administer them separately, rather than in Solpadol form)

Unfortunately not long after arriving home I had a week long vomiting session whereupon I began vomiting up my feed - which could only mean one thing - tube displacement!  I went for an Xray on Tuesday this week, after using my JEJ for very slow rate feeding and medications all weekend)  and it was confirmed that the tube was in my stomach.  Fortunately they managed to fit me in yesterday as an outpatient and despite a 2 hour wait, the tube was replaced.  Not quite such a comfortable experience this time, especially during the re routing through my nose but I was only given 6g Midazolam and I think the extra gram made all the difference.

Fortunately my vomiting has calmed down this week and I've been managing to get on with work as well as nursing a couple of very poorly guinea pigs, both of which are now, thankfully on the mend and I hope this continues.

As for a long term plan (NJ tube not being a long term option) I'm unsure what's going to happen; I still have my JEJ which is constantly infected and reacts to essentially nothing and is highly granulated and painful.  It would seem it was the tube causing the problems, rather than my intestines, as I am tolerating 45ml an hour via NJ - which is very good news.  I'd happily stick with the NJ since it's a LOT less painful, but I guess I'll have to wait and see.  I have expressed to my surgeon the fact that I'm in no hurry for a permanent tube again due to the total disaster of the last, which has now been in situ for 3 years (and incidentally never changed, despite there only being 1cm let inside my body and this particular tube is only recommended for 6 months use before replaced!)

I'm off to see Professor Epstein in 2 weeks so I will be sure to post an update on that.  I hope the outcome with be positive.