The hospital is having great difficulty getting Andy to eat and drink enough. He pulled out his NG tubes repeatedly till it was either try without it, or fit him with a bridle to try and keep it in place.
Having been advised that a bridle should be a last resort we (the hosp and myself when there) are trying to get him to eat and drink enough through the day.
He's on a soft food diet, with thickened drinks, and doesn't want to eat or drink most of the time. Each day he's bearly getting the minimum he needs and thats only coz when I'm there I push him hard to eat and drink. Yesterday I got 5 cupfuls down him in 4 hours plus a yoghurt and half his dinner, and today 3 cups, all the meds he'd refused/spat at them earlier in the day, and all the main course of his dinner. Bearing in mind I got there at 2pm he'd only had 1 cup of juice and a banana first thing then had got grotty and swore at the nurse and spat at her when she tried to feed him or get him to take meds.
I can't spend any longer per day there - wish I could - but I'm there for about 4 hours, and it takes me about an hour and a half to get there and same getting home on top of that, and I have fibromyalgia myself so I'm right at the edge of my own health collapsing if I'm not careful.
The hospital has suggested I bring in things he likes to tempt him with - not managed to think of much that falls in the 'soft food' diet of puree'd/mashed stuff that I can take in that they don't already have, and I'm getting worried that he's going to go backwards if he doesn't start eating and drinking properly
Anyone else have this issue?
Any ideas?
How the heck do I get him to realise he's got to eat and drink more
Also - today Andy had a lumbar puncture done and they drained off some fluid partly to check if the infection he had has gone, but partly to check to see if he was getting a build up of fluid. They tell me that he's not got much pressure there which is good, but at the same time he did seem happier after it was done, and I don't know if this was just coincidence, or if less fluid actually helpped him. There was talk that he might not be moving forward fast and that the temp might be going up coz he needs a shunt putting in, and that they might do that tuesday, but now they're re-thinking that coz they're saying the pressure was low and that they think he may still have infection.
Arrrg - right now I feel like I'm starting to go a little bit nuts. Not sleeping well, keep dreaming about all of this and am finding everything very hard. I just wish he'd start co-operating and moving forwards
Sorry to sound so negative, I'm exhausted and running out of ideas and coping strategy so if anyone has any helpful tips/hints/ideas/experiences that might help, I'd love to hear from you here or by pm. I'm just so worried.