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Friday 9th September 2011

Hey folks, I'm back!

Everything went according to plan, I went into hospital on Tuesday to have the naso jejunal tube fitted. It was a bit of a painful experience this time round, the medazolam (sedative) started wearing off just at the worst possible time. Needless to say it was not a pleasant experience and my nose and throat hurt like hell...BUT I don't care...I'm finally getting some food. I would put up with anything for that and at the end of the day it was only 5 minutes of pain in exchange for months of agony and starvation.
I'm so grateful to everyone at Durham for helping me to get some quality of life back after all these months of uncertainty.

The treatment...

I had a few days on IV Pabrinex (Vitamins) which has made me feel much brighter in myself. I have also been able to give my body a real rest this week with plenty of quality sleep and NO FOOD yipee!!! I am so relieved not to have to face the cycle of eating and vomiting every day, I can now get the calories I need virtually pain free! Yes my nose and my throat hurt and people stare a little but to me it is SO worth it!

I started on 15mls an hour for 24 hrs will be gradually increasing the dose every few days so that eventually I can just connect to the pump overnight and not have to cart it around with me everywhere. At the moment I am on 40mls an hour for 24 hours so it has to go everywhere with me. Meaning that I'm a little housebound at the moment because I don't yet have a carry case for during the day. Hopefully that will arrive next week and then I will be able to get out a bit more. I was sent home with 7 days supply of syringes, giving sets, sterile water (to flush the tube with) and the bags of feed. At the moment I have a Z stand to hang the bag from which I can carry around the house but the tubes do get in the way a little and a few times I have stood up to go somewhere and forgotten to pick it up (which really helped the sore nose!) so I think it's going to take a while to adjust to having it around.

If I have any problems like the tube getting blocked or dislodged they said just to go straight back to the ward. The staff are all lovely there and so much more organised than my hospital here at home. The community dietitian is coming to see me on Tuesday next week and I have a written plan of what to do until then, with all the contact details I need etc. Believe me after months of dealing with illusive Drs it is so refreshing to be given all this information without having to ASK for it! What can I say? What a team!!!

So all in all it went very smoothly and I'm back in my own comfy bed with very little pain and a belly full of food...yay! Maybe NOW I can start getting my life back!?

Oo and just to say thank you to the anonymous lady who sent me a wonderful message earlier this week, I have posted it at the bottom of the "your stories" page. I hope things improve for your daughter soon, but feel free to contact me any time, I'm always happy to help in any way I can.

You can email me at helpmeminx@yahoo.co.uk

Love and hugs and a big happy smile from Minxy xxxx

Comments

  1. Kirby9 September 2011 at 20:32

    I am so glad to hear you finally got that feeding tube. I knew it would be best. No one WANTS a feeding tube but if it makes it so we can actually live life, it is but a minor inconvenience. I hope you continue to do well at home and recover all the energy and weight you have lost. Hurray for no pain days!

    ReplyDelete
  2. Anonymous10 September 2011 at 04:26

    Hey hun,

    Thats great news that you are now home and managing to get some nutrition in. Sounds like you have an excellent and supportive medical team now and wow doesn't that make a massive difference.

    Sorry I haven't been around as much as I would have liked to have been. Things haven't been great health wise. Just know I am always thinking about you.
    Love
    Rach

    ReplyDelete
  3. Minx10 September 2011 at 11:27

    Hey Kirby,

    Thanks for the lovely message, I want you to know that it was your website and kind messages that made the prospect of living with a tube so much easier to deal with. For that I thank you so so much x

    Thanks Rachel,

    I am touched that you took the time to read it hunny, I know how bad things are for you right now. I'll send you a new box set for christmas if you promise to improve before then lol. I'm always thinking of you x

    ReplyDelete

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