Home Sweet Home

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

Post a Comment

Hi please post comments below, I love to hear from my readers so don't be shy X

Popular posts from this blog

Gastroparesis, EDS & the Final Piece of the Jigsaw Part #3 / Cranio-cervical Instability!

Image
I know I left Part 2 somewhat in the middle of the consultation, so I'll try and start where I left off and see where it goes. Obviously there are inevitably going to be more "parts" to this series the deeper we go, so bear with me I WILL get it all down on here eventually. To sum up the last post in a few words, the diagnostic term for my neck issues is, Cranio-Cervical Instability. Naturally our next question was, "What can we do about it and what does it mean for the future?" This is where I struggle to explain. When it comes to brain/spinal surgery the decision process is not so cut and dry! So, the only way to actually fix the instability in my head and neck and prevent any further neurological damage would be to fuse my skull and top two vertebrae together using metal rods (permanently immobilising my skull C1 & C2) and remove the excess tissue that is causing the brainstem compression. Obviously this is a very risky procedure and not one
Read more

Gastroparesis the Truth

What is it really like to live with a  debilitating condition that may never go away? In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself?  So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by. Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new
Read more

Gastroparesis, EDS, & the final piece of the jigsaw #Part 2

Image
Click here for #Part 1 Most of you will already know through my blog, I'm not keen on surgeons ( to put it mildly ) so that key moment when I first meet a new one always feels like a very tense and anxious exchange. Years of plodding through the various health systems has unfortunately made me very cynical so it takes a lot to win me over these days. ... However,  Dr G had a very open and friendly manner about him which was instantly reassuring, we felt like equals from the offset so any tension we had felt beforehand quickly disappeared. He managed to hit my top two priorities on the head in pretty much the first sentence! He explained that he had been very interested in my unusual presentation and was keen to understand more , which is always difficult through email conversation. (not exactly a demanding list but surprisingly hard to find, especially among the surgical fraternity!) Prior to the appointment I had submitted a series of questionnaires including; a CCI quest
Read more