Friday, June 19, 2009

Day +126


Hi All, I’m very sorry for not keeping you all up to date but as you’ll see it was a very hectic week. I won’t go through day by day update instead I’ll just talk about the big things. You know I had a biopsy last Friday, well it seems that every time I have a biopsy something dramatic happens and this case was no different. I thought I got over the biopsy quite quickly and I had a reasonable ok day on Monday and Tuesday with ok nights (only up about 3 to 5 times per night). But what was happening was my weight was gradually going up and up. I came in at around 32kg and three weeks ago I was 35kg but by Tuesday night I was heading towards 41kg. Everything here is measured, checked and weighed, so when my weight started going up and up the doctors started to get worried. It turned out that my kidney was not working quite as well as it should and so I was taking on more fluid than I could get rid of. The docs here were quite worried and kept looking at all the fluids that was going into me. They decided to change a lot of my meds from transfusions (which require the medicine to be diluted with water) to direct feeds into my tubes. They also said I had to limit my drinking to 150mls per day, which was nearly impossible. Dad went home on Wednesday morning and he was only home a couple of hours when he got a call to come back to help out. My mums dad (gaga Christy) was over for another visit and at the start wasn’t allowed into my room. So dad came back on Thursday morning and he brought Nana Ruth and gaga Michael, so now I had a small crowd and surprise surprise on Thursday afternoon the doctors decided that my grand parents could come in. It was great to be able to spend some time with them. Also by this stage I still hadn’t wee that much so the doctors changed my medicines and put me on a huge amount diuretics. Everybody seemed a little concerned and we sat tight and weighted. Late on Thursday night all changed again and I started to wee for Ireland, in fact I kept on going all today. Now the next issue is this. As you know I’ve been pooing loads for the past couple of months, well now I seemed to have stopped, or as Prof Cant say’s ‘I’m on a go slow’. Speaking of Prof Cant, he came in this afternoon and said that he was very pleased that my kidneys were back working and that the biopsy results from last week showed some improvements so he was a little happier, but still concerned about the lack of poo. So as you can see it’s been a very busy couple of days with lots going on, as usual.
Oh, the last big piece of news is that I got a personal letter from Brian Cowen on official government paper. Everybody over hear was very impressed that our Taoiseach took time to send me a letter. So that’s all for now, lets hope that everything returns back to normal real soon. Thanks to Marie for my bag, you are right a lady can never have too many ! and thanks to Ross for my cool dvd – I love it.

16 comments:

  1. Hi Naoise,

    What a lovely surprise to see your post tonight. And how brilliant for you to have all those special visitors. I've been thinking about you so much recently, that I decided to put those thoughts into a poem! (maybe poem is too fancy a word for this...more of a rhyme, but I hope you like it - it's sent with lots of love)

    A POEM FOR NAOISE
    My niece in Newcastle is full of might
    She’s been putting up one hell of a fight
    Its true to say she's had it so tough,
    But boy she’s shown she’s of sturdy stuff.

    My niece in Newcastle is smiley & fun
    And even when she’s sick the funs not done!
    Writing on her blog she can even make me laugh
    She's a way with words that’s a talent and a half

    My niece in Newcastle has a celebrity list
    Now I hope from this list there’s no one I’ve missed:
    First the Taoiseach wrote her a letter,
    Xfactor then sang to make her feel better
    Next, a radio interview and when that was done,
    She shared runway space with Hilary Clinton.
    She’s visited Holland on her private jet
    With Naoise, I feel there’ll be lots more yet!

    My Niece in Newcastle has a super mum & dad
    They’re the best parents Naoise could have ever had
    Their strength & courage is there for all to see
    And their love for Naoise is forever to be

    My niece in Newcastle is into Pink
    And I mean into pink, more than you’d think!
    Thanks to Naoise, pink's the new hot obsession
    Now pink back scrubs are a must-have possession!

    The team in Newcastle are getting Naoise fixed
    And together they’ll get this sickness licked
    When that’s all done we’ll buy them whiskey galore
    To say thankyou, thankyou from our hearts & more

    So Doctors & nurses use your bag of tricks
    To fix our Naoise quick quick quick
    Send her home - happy & well our way
    Coz we miss her more than words can say


    Missing you lots Naoise and hoping that you're feeling better soon. I hope the weekend is a good one for you (with some poos thrown in too - fingers crossed!)
    xx
    Aisling

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  2. i always read your blog Naoise! i was in and out of hospital a lot as a kid so i can relate to what you're going through but i must say you are so brave and truly inspirational. hope you have a quick recovery and ill continue to follow your posts

    xxx

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  3. hi naoise
    its sibeal and hannah here hannah had a sleepover in my house yesterday and we are going horseriding later.
    nice to read your blog again thought you had gone on holidays without even telling us!!!!!!! you are such a celebrity these days you never know what you can get up to!!!!!!
    lots of love and kisses
    sibeal and hannah xxxxxxxxxxxxx

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  4. Hello Naoise,

    Wow you have had a very busy few days! YOur very good for updating your blog even though you have been so busy. Im so sorry you have such a tough time. But its good you have started weeing again. HOpefully you will start pooing again soon honey.

    Thats great that you had loads of visitors and thats brilliant they were allowed in your room. Thats cool you got a letter from Brian Cowen on official government paper, thats so impressive Naoise!

    I watched your vidoe, it was so lovely to see u and hear your little voice. I just read Aislings poem, its absolutely brilliant, i loved it! I wish i could make up poems like that!

    Take care honey. I hope everything returns back to normal really soon. Im always thinking about you. Miss you so much.

    Lots of love,
    Chrissie x x x x

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  5. Hi Naoise,

    ITs great to read your blog every day, Emma always gets worried when its not updated. We are all delighted your kidneys are working a bit better now, and hopefully you will be feeling a bit better soon. We all miss you and emma cant wait to come over and see you again soon. Say Hi to your grandad for me, Talk to you soon

    Lots of Love

    Barbara, Emma, Shauna, Anna XXXX

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  6. hi pinky.
    im so happy ur ok i was on everyday and no post ive been tormenting ur aunty chrissy making sure ur ok im thrilled to see u in ur chair babe looking well and smiley.

    cant believe the poo has dissapeared dont worry im sure it will come back u prob havent been eating much to poop least ur poor bottom is getting a rest drink some o.j that will defo make u go.

    so all the family are there thats good id say its lovely to see them all i know u must be missing them so so much i know they all miss u2 alot . i just read that poem ash wrote totally brilliant u have some amazing aunties ur so lucky.

    hope ur getting some rest. no news here did u see x factor auditions have begun in england not long now it will be on by the end of summer i cannot wait.... talk soon pinky lots of love aoife xxxxxx

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  7. Hey naoise. Aislings poem was really nice!!! Not much going on at the mo. Next Tuesday we are off school. Yay!!!!!!:-) have u got my letter yet ? I put the wrong address on it! LOL well i'll send you another before I go on holidays. Actually I will send u a post card!!!!!!!!

    Well I better go miss u lots. Lots of love and hugs Maeve xxxxxxx

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  8. Hi, Naoise, you have been having a tough time and it must be hard to cope with it all but you are a shining example to us all and we admire and love you very much.
    It is great news that you are weeing for Ireland and I am sure the poo will follow soon. Always thinking of you,Lots of love and special get well hugs, Niall & Patricia.

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  9. Hi Naoise
    I hope you had a good weekend with lots of poo! Seems strange but you know what I mean.
    I havent posted for a while as I was on holiday in Lanzarote but your Mum kept me up to date on how you were.
    What a great poem from Aisling and all so true. You are a remarkable little girl and its no wonder so many people love you and are saying prayers for you to get better very soon.
    It must be great to have so many visitors with you now and you deserve it.
    Thinking of you always, Naoise
    Love Eileen xxx

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  10. Hi Naoise,

    What a fantastic poem Aishling wrote you - one to keep ! Im in work at the moment and looking forward to going home shortly as I have been stuck here since 4 pm and its almost midnight now. In between working I have been texting your mam asking her "did Naoise pooh yet". Seems mad I know that we are all interested in your wees and poohs but if thats what makes you better - we need to know !

    The poem described you, your mam and dad down to a "T". I know your probably fed up hearing how your a fantastic little fighter but we all need to keep reminding you in case you forget ??

    Well I have no other news at the moment. Lilian phoned me to fill me in on her trip over to you and it was great to hear all about you cause we all miss you so much.

    Nite nite love - hope you get lots of sleep.

    Chat soon,

    All our love 'n' hugs,

    Nuala, Matt, David, Sean and mad Cillian !!

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  11. Hello my lovely,

    So nice to hear your news and see your latest picture - your hair is really growing!

    Sorry to hear that the number ones and twos have been causing you such bother. Fingers crossed they'll stop misbehaving soon.

    Your aunt's poem is brilliant. You should be feeling very smug - poems written in your honour, VIP post and being officially the pinkest princess ever!

    Look forward to hearing more Mc Grath club news soon,

    Love and hugs,

    Gail
    xxx

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  12. Hi Naoise,
    My god that poem is great. And you're blog is a great way of keeping in touch. You're such a little fighter Naoise, we're all thinking of you over in Temple Street, you're doing everyone so proud. Give my love to your mammy and daddy and a big hug from me to you,
    Triona x x x

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  13. Hi Naoise,
    Just a note to let you know we are all thinking about you and praying for you.I can't believe Brian Cowan wrote to you. That's brilliant! I can understand why people there were impressed. I'd say you had another hectic day seeings as your blog isn't updated. You are so good for keeping us all up to date but don't worry when you miss it now and then. We think you are marvellous. You keep so positive and in good form through it all. Keep it up. You are an inspiration!

    I'll write soon.

    Bye for now
    Lots and lots of love
    Vincent, Margaret, Ross, Greg and Luke
    xx xx xx xx xx xx xx xx xx xx xx xx xx

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  14. hi naoise
    how are you??
    me and hannah sent you a letter but i think we sent it to the wrong adress lol oh well i will send you another one soon!!!!!
    oh and guess what im going to new york in november i cant wait and im going on holidays to france on friday so i wont be able to look at your blog that much but hopfully i will be able to go to the internet cafe over there and look and your website!!!!!!!
    im glad that everythings going well
    i got a little worried when you didnt write
    your hair looks nice its growing!!!!!!
    so i will talk soon
    lots of love and kisses Xxxxxxxxx
    sibs and hannah

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  15. Hi Naoise Wonderful to get your up date you will be feeling lighhter & brighter from here on Well done a very big thank you to all WE look forward to your next blog WE went to byron bay walked to the light house its very high above the sea looking down can see lots of sharks
    when you look around the cove lots of surfers what brave people they are big hugs to you also Mum & Dad keep up the good work NAOISE
    Anne Brisbane

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  16. hi naoise i feel so sorry for u

    My friend is called naoise as well she says hay

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