Rafe's Brain Diary

Diary continued....

  • Tuesday Mr Porter says I have Aquaductal Stenosis which is a blocked tube that lets all the brain fluid flow around the ventricles! (tube)  May need an operation! He has referred me to Mr Solanki, Neurosurgeon at Birmingham Childrens Hospital. Mum and Dad in shock.

  • Bells Palsy has gone now - thankfully. I am feeling ok but still geting headaches and am sick sometimes.

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  • 5 weeks later - still no appointment with hospital - Dad ringing nearly every day - eventually get one through - hooray!

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  • April 11th 2008 - went to see Mr Solanki today - he is very nice and calm - says that because I am feeling so well he is not overly concerned. Maybe it was a viral infection - but we should keep an eye on it and if I feel ill then we are to let him know and he will have another look at me. Good - hope I am over the worse now.

  • 14th - I feel awful again - lots of headaches on the right side of my face (same side as Bells Palsy). Mum e-mails Mr Solanki and he books me in for MRI scan TOMORROW.

  • 15th - Dad away in USA - so Mum, Nan and Grandad come with me for scan. Much nicer - warm and friendly and I can see Mum in a mirror above scanner. Play my Enrique Englaises CD and Mum can hear it too!! Still no results so we go home.

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  • 18th - Feel really bad now - face is very painful. Mum e-mails Mr Solanki again.

  • 21st - Mr Solanki calls and insists we come into hospital TODAY! Dad is in London so he comes back up on the train. I am admitted to Ward 10 - feeling a bit scared - lots of blood been taken from me and I am not allowed to eat anything - have a sign above bed - 'NIL BY MOUTH '- I am not happy!! Mum says she should have that sign around her neck to help her lose        weight! Ha Ha - I like my 'just right' mummy so I don't agree with her!

  • Dad arrives at about 4.30pm - just as Mr Solanki is coming onto the ward. He takes Mum and Dad to an office to show them my scan results. I join them later to see a picture of my brain - COOL - I can see my eyes and tongue too!

  • I am having an operation tomorrow at about 1.30pm - I am very scared and cry alot. Mum is giving me lots of hugs and Dad is stroking my head.  Dad goes and gets me dough balls and pizza and we eat it in the playroom - I am really hungry.

  • Dad goes home and Mum and me try to get some sleep - not easy as it is VERY noisy on the ward - no-one seems to whisper!

  • 22nd -Wake up at 6am and I am allowed a bit of toast and a drink.

  • Dad comes in at about 10am - I am stuck in bed - all wired up to blood pressure machine. Have lots of blood taken out of me - OUCH! The operation is called a ENDOSCOPIC THIRD VENTRICOLOSTOMY - I think !

  •          4pm - just going down for surgery now - trying to stay calm but end up SCREAMING when they put the anathestic in            my arm -  my face went all hot and it was horrible. Mum was crying cos that was her last memory of me!

  •           5pm - am back on the ward! Mr Solanki was called to an emergency whilst I was waiting on operating table - am very upset because I thought it was all over AND they still won't let me eat.

  •           9.45 - At last - going down again - am a bit calmer with anathestic but still not good. Hope Mr Solanki stays awake to operate on my superior brain!

  •           11.45 - back on ward again now - so happy - told Mr Solanki off because he hasn't let me eat for 17 hours! He said I could   have 2 custard creams - so I did! Yum!

  • Doctors are very pleased with me and I am allowed to come home on Thursday (had op on Tuesday night) - I can't wait to get back into my own bed.

  • Thankfully the operation was a success and my headaches have pretty much gone now - I am feeling much better now - just got to sort out 'wart' now !

  • It has been a real roller coaster- and I am still very much on it ! Will keep you updated.  {:-)

  • 29th - Have gone for an MRI scan today to check that the operation has worked - was in there for 1hr 20mins!

 

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