Monday, November 1, 2010


31st October and 1st November 2010

At night when I am lying in my hospital bed holding Theodore tightly for comfort, I shed silent tears, I am missing home so dreadfully and not having Mum close, even though she is in Sydney, we are not in the same place at night.  My nightmares that I used to have about been behind the door and calling to Mum and her not hearing me have started again.  I am scared, at least when I have been through all the other difficult times throughout my journey, Mum has been so close. 

My weekend was as good as it could be considering I was stuck in hospital, Mum was able to be there apart from at night, which made the sun shine within me.  We had dinner together on both Saturday and Sunday night, almost like home except the rest of the family were missing.  We were able to go for a walk around the hospital grounds, my eyes hurt at first because I had not seen the light or experienced the freshness of the outside air for over a week. 

I still have the nasal gastric tube and it is beginning to become irritating, it is itchy and it actually hurts near the corner of my nose where it is inserted, the nurses told me that people often get ulcers from them and that is what they suspect will happen to me, so once it is out, I will be given some cream for it.  The doctor told me yesterday that it would be coming out soon but would not give me a definite day.

Hopefully today I will have my MRI on my right foot, it still not been done and my foot is extremely painful, I try to relieve it with deep heat and Mum rubbing it when she can.  I attempted to put some weight on it yesterday and nearly flew through the roof, I wish I knew what was wrong with it so I could start some rehabilitation for it.

This morning I had my blood taken again, you should see my arms, they have holes everywhere from all the blood tests and are very bruised, talk about been a pin cushion.  An ECG is supposed to be done today, the other ones were fine, they just wanted to check one last time to make sure there is no problems with my heart.  My pulse rate and blood pressure have all been great although my blood pressure is as always was on the low side.

Mum called me this morning before I went to school, I was so pleased to hear her voice, I will not see her until later this afternoon unless she is called in for any of my appointments.  They should of let her go with me for my bone density on Friday because there were questions about the family history that I could not answer, so Mum had to let the doctor know and then it had to be passed on because it was important. 

School is not like at home, I miss my Teacher and my friends at school, also because this is New South Wales the work is very different to what we do back home at school.  Not only last year did I miss school, I have missed quite a bit this year due to my follow ups every three months and now this. 

Someone said it is overcast outside today and quite cool, I would not know being stuck in here but hope the sun will shine very soon and I will be back home and able to enjoy my life again.


Anonymous said...


I hope that tube comes out soon for you, it must be awful. We put them in the tiny babies and they even try to pull them out, sometimes successfully :)

Wouldn't it be fantastic to have a childrens hospital in canberra, you are right, being the Nations Capital we should, then we could also look after a lot of the country kids who like you have to travel to Sydney or Melbourne for treatment.

You are very clever being able to write with both hands.

I am sure your friends at school in Canberra are missing you too and your family must be really missing you and mum.

I am so glad you have found some extra strength, where does it all come from in such a little person but I guess its in that big heart you have.

Take care, Thanks again for sharing your journey, it makes all of us reading, be better people.

xxxxx Monica

Anonymous said...

Dear Dainere
We too feel so sorry for you having that feeding tube in for so long when from what we hear you have been really going ahead weight wise. Surely it will be taken out soon.

Also, we are very sorry to hear you have not had that MRI on your foot yet. How dare they keep a little girl in so much pain without diagnosis or help, after all you have been through. Still that seems to be our poor failing hospital system these days.

We agree, as we lived there for over 40 years that it is absolutely shameful, and many other similar words would describe it, that a children's hospital does not exist in the nations capital. We say shame on all those responsible for holding it back.

You indeed, do deserve better treatment than has been given you and hopefully you will get back to your lovely family very quickly.
What a big strain on all of your family it has been.

Keep up that never ending courageous spirit.

Lots of love and our prayers.

Nan and Pop xxxxx ooooo

PS you may find a little surprise waiting for you when you get home.

Gavin said...

Hang in there Princess,

I hope that the tube is out soon too. I am not sure how you will fit profiteroles through that small a tube.

Remember when you are able to get guests that are not related let me know - failing that lets just tell them that we are related! I could be your big brother....your mum might not like that idea though, it will make her seem older than she is.....hmmm will have to think about it.

Talk soon and know I am thinking of you

Anonymous said...

Dear Dainere,
Let me assure you that we miss you too. Your chair is empty and so is your mum's. No-one sits in your chair when you are not here.
I can surely give you some work and will send you some to your other address for your mum to bring in. Then at least you will doing the same work there. Gosh, none of my other students are wishing they had more work to do :o)
I have had a nasogastric tube in too and I know how irritating it can be. Swallowing is so uncomfortable and all those soft tissues feel like they are being ground away from all those hard surfaces. I pray that they take this out soon for you so that your nose and throat can start to heal.
Let me know when you are able to have some visitors. I would love come and visit you to say hello.
Tomorrow is assembly and I will do my best to deliver your message.
Take care Dainere, God Bless and love to your mum too.
Mrs Chatty.

Anonymous said...

HI Dear Dainere, OH that is very sad , I hate to hear of you being so sad at night ,that it makes you cry at night , what can I say , Just believe me , , everything you tell me is normal Dainere, and hopefully you will soon be home.

We would love t come and see you, at least it would be a different face and something new to talk about ,. ah well time will tell. But you just let me know if we can come and visit, with mums blessing of course.The main thing is continue progressing , you chase that rainbow .

So so glad you had dinner saturday and sunday withy mum , thats would have been so "splendiferous"

This Ng tube UMM , a product is available to take away the pain of it rubbing against your nose , I have seen them at my hospital , i guess its a bit late now , and hopefully you wont be on a Ng tube for a long time now .

How did you go with the MRI , did you have it done today ?

Also the ECG , was it done ?
Yes mum should go with you , they are naughty not letting her go .

At least you are warm inside with this terrible weather we are having Dainere.

Just a bit of my news , the new Baha seems to working ok , saw the audiologist on Thursday , did some computer programme testing and its looking good , wow though it is very heavy on the batteries , not like the old one . Ah well enough of my drizzle . Hope you continue to get stronger each day , you take care my friend , oh by the way are you keeping up with JUnior Master Chef , its a great show and the young people give me hope , they are soo soo good .

Stuart and meryl xxx

Ali Davies said...

Hi Dainere,

Those feelings you have of a night time of being alone are understandable given what you are going through.

When it is night time in Australia it is daytime here in Ireland. So when Australia is sleeping, know that there are still other people out there in other parts of the world wide awake, thinking of you and sending lots of support and good wishes.

Keep on keeping on Dainere

Ali x

Anonymous said...

Hi Dainere,

That sounds like a terrible tube I can't stand needles either I've only had 8 but I still hate them. I found this quote that you may like "Our Greatest Glory is not Ever Falling But Rising Every Time You Fall" and heres one I made up (so it may not be good) "Life is not about trying to dodge lifes storms it's about learning to dance in the rain"

How was you MR? I do hope profondly that your foot gets better. I'm sure you'll see your Mum soon but untill then keep strong.

With hope


Anonymous said...

Hi Dainere
Hang in there babe! I hope you dont have that nose tube in for too much longer. Im glad that they are on the right track and you have a new team of doctors. I hope they send you home soon. Thinking of you always Luv Sandra xoxoxo