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Updated  22 August, 2002.   

Thursday 31st January 2002

We were back in hospital today because Megan has been refusing to feed orally.  We actually had to put a naso-gastric tube down because she became so distressed when we tried to feed her.  This way she was at least getting (and most importantly, tolerating) fluids so as not to upset her sodium levels too much.  After 6 hours in the emergency of the RCH we were finally allowed to go home.  A CT showed no evidence of increased pressure inside her brain.  An abdominal X-ray however showed a huge backlog (pardon the pun) of poo, otherwise known as faecal loading, causing distension of her bowel.  She was given an enema (a lovely thing to have done? :) ) and it helped at least a little to clear her out.  She did feed again from the bottle tonight which is definitely a good sign, but until she can go for at least 3 days straight I am keeping the tube in just in case.   They think that possibly constipation causes her quite a lot of discomfort and this may be why she refuses to feed.  She had blood tests and urine tests - all clear, no temperature, no ear infections, no throat infections, so now we have a bit of a plan to help with her constipation and hopefully this will help lots.

{Side note:  Little “Miss” pulled her NG tube out during the night last night so my 3-day theory is no longer!}

Saturday 26th January 2002

Yesterday we came home from hospital!

On Wednesday evening Megan went back to the operating theatre for more surgery.  Throughout the day she became very drowsy and was awake for only moments before drifting back to sleep.  At around 9pm a needle was inserted in the reservoir of her right shunt to test the intra-cranial pressure.  Her reading was 26.  "Normal" ranges from 0-15, with Megan's neurosurgeon preferring her to be about 10.  So, a reading of 26 was very high and this high pressure was due to the clamping of both her shunts, and she not being able to adjust.  She now has one shunt clamped (left) and the right was unclamped.  The improvement in Megan was incredible - we got our little girl back!

Today marks the occasion of 'One year since diagnosis'.  It was on this day last year that we were told our baby had a "3cm growth" in her brain, thus embarking us on this whirlwind journey of emotions that is the 'brain-tumour world'.

One year down... a life time to go! :)

Monday 21st January 2002

One week later and we are still in hospital....

Megan's surgery went well but within 6 hours after surgery she started to vomit.  She has continued to vomit throughout the week but less often as the days went by.  As she has diabetes inspidus, vomiting causes an additional problem of playing havoc with her sodium levels.  If she isn't vomiting her sodium level seems to be either too high or too low - meaning we can't go home.  She has had 2 CT scans to ensure that there isn't too much pressure in her brain and each scan has looked "good" with no real evidence of this.  So we are soldiering on and hoping to get home soon.  They believe the vomiting is due to her trying to adjust to new pressures inside her head.  Since 6 weeks old, the shunts have removed the excess fluid and she has not had to absorb this in her brain.  Now her shunts aren't working and she has to adjust to absorbing the fluid herself.  We will get there. 

Monday 14th January 2002

Happy New Year to everyone! Lets hope that 2002 brings much happier times.

Today, Megan goes back to the RCH for surgery to have her shunts clamped. I can remember when Megan was first diagnosed hoping that after her second MRI the neurosurgeon would tell us that they would simply cut out her tumour and therefore she wouldn't require a shunt. When he told us her tumour was inoperable and that she would need not just one, but two shunts, our lives were placed into a new realm of uncertainties and insanity. Well.... it is nearly 1 year since we had that conversation, and maybe our wish will come true. Her tumour HAS been 'cut out' and her shunts may very well be removed if the clamping goes well. Never say wishes don't come true.

We will keep you updated on the progress of shunt clamping.

Please enjoy some recent pictures of Megan & Casey over the Christmas and New Year holidays..