Home again!

Friday, April 10, 2009

I'm home again, and in record time!

As you know, I went in on Monday and arrived just after lunch. The ward is mainly made up of Cf patients and because they often spend so much time in hospital the rooms are quite nice and some are very flash with large screen tvs, etc. My room was a single but pretty basic with a small "on the blink" tv and no phone to start off with, but it was comfortable and I had a laptop to keep me amused. That afternoon a nurse came in to talk me through putting my first NG tube down. I was very nervous but knew that getting the first one down would be a major hurdle for me. I was adament that I would do it by myself rather than have someone do it for for me. Much to my astonishment I passed the tube first time!

For those who are interested I'll describe how its actually done so just warning you before you read on.....

It literaly took under a minute, but was quite unpleasant as you would expect. The tube is very thin and flexible, and roughly 70cm long. I feed it up my nose, at the back there is a little resistance from the throat muscle but you gently push past this and into the throat. The tube is then at the top of my throat and if i opened my mouth you would be able to see it hanging down! This area is the trickiest as your natural instinct is to vomit the tube up so I have to swallow some water while pushing the tube down to help it go and to prevent the vomiting reflex. After that its relatively easy to push a bit further through, as I say the tube is about 70cm long and i need to get it down about 53 cm. Its then just stuck to my face with some dressing, I draw off some fluid and check the acidity with PH strip to make sure its in the right place, stomach = acid, then I connect to the feed pump. The feed is pumped through at a set rate and is taking about 10 hours to finish. In the morning i simply remove the dressing and pull the tube back out.

We increased the feeds slowly, and I'm currently on 600mls of feed which is the equivilant of 1200 calories which is working well (fingers crossed) I have to sit up to sleep though as with my reflux problems need gravity to help keep it all down as much as possible. So far to my astonishment I have tolerated the feeds very well and I think this is also helped by the fact that I dont need to eat so much/such rich food during the day. Although I do still need to eat as much as i can, the pressure is off a little.
The first night in hospital I was observed putting the tube down and helped to set up the pump etc by staff but after that I did it by myself for the next couple of nights. Everyone was amazed I'd done it so quickly, my dietcian was brilliant and she said I had "exceeded expectations". The doctors agreed that there wasnt much point in me sticking around, so I was discharged on Thursday and got home by 9.00 that night :) Total stay : 3 days!
It was daunting to come home. We have lots more supplies to find places for and to have to carry on with the feeds by ourselves but it is nice to be back. I am feeling a bit mixed at the moment, been pretty stressed and starting to relax again, worried that its all going a bit too well..., hoping the weight will start to go on now, depressed with all the extra upheaval with the new treatment and a million more besides.
I'll leave it there for now or this post could get very long!!! So many bits and pieces to write about...
Next time I'll hopefully be a bit less muddled! (although i wouldnt bank on it)
Hope you are all having a happy easter and thanks for all your lovely messages and prayers xx

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  1. wow, sounds like your good at doing it, and it could be a sign that its what u needed if your body took to it that well!
    and there not as much pressure on you to eat soo much during the day which must be nice.

    glad you home early and had easter and the weekend in comfort!

    loves ya xxxx

  2. see you just make it seam so darn easy....and in record time!
    now just get some fat on you so you can breeze thru surgery!

  3. OMG!!! This is just the best blog update possible...you are such a STAR!!! I have been hoping so much that the ng tube stuff was going ok. You were so right to insist on doing it yourself, there is nothing worse than a nurse trying to force one down you. I bet you're a real pro now! Here's to you putting on that much needed extra weight and getting your call as quickly as possible afterwards! Tons of love pretty one xxxx

  4. i hope all is well and your tube is doing its job.