Headaches

Tough couple of days, Niamh has started to get what we believe to be severe headaches. We've been stepping up her pain medication and now she is on regular oral morphine. Tomorrow the Macmillan team will review giving her a background dose of morphine leaving the oral morphine when required.

At the same time we have been investigating whether her shunts are overdraining or not. We think this could be the cause (partly) of the headaches. This does fit with what has been happening to Niamh since her MRI last week. Headaches which do not respond to pain killers, the sunken look to the scars on her head and that she gets some relief from lying down (which would be good if she wanted to lie down!).

The neurosurgeons have adjusted her shunts from 1.5 to 2 on her left (VP shunt) and from 1 to 1.5 on her right (subdural shunt). If there is no improvement in the morning we'll contact them again and they may consider a CT scan to check the size of the ventricles in her brain.

With all codeine, ibruprofen and then morphine, Niamh seems to be starting to pick up side effects such as itching and some tummy discomfort too.

She has settled now after we've topped up all her medicine and applied special anti itching cream. She's sleeping in our bed tonight and we are listening to the music from the Prayers For Niamh event that Muireann, Helene's cousin, has kindly set up.

If you don't have access to facebook, here is Muireann's message:

Hello friends,

I am inviting you to become members of this group to pray for my cousins little 3 year old who is very very ill.

Niamh has a very aggressive brain tumour and although she has fought valiantly over the last year she seems to be losing the fight now.

As I lit my sacred candle today for her at 3, to pray for her, bring her to my heart and mind, I thought how nice it would be if we could all remember her in our prayers or hearts every day at any time but in particular between 3 and 4 pm.

I would really appreciate it if you can think of her and her family...mum Helene, dad Alex and older sister Emilie during this very difficult time. I thought that if you would like to pray or meditate then let's do it together as our own little community...light a candle, send her your love, sit still, pray to your God, listen to some inspirational music...whatever works..if we could all do it around the same time every day...well...you never know...the collective positive energy may just help...somehow.

You can follow her progress on http://niamhsilk.blogspot.com/

Thank you,

All my love,

Muireann

x

http://www.youtube.com/watch/?v=xZ9ycGq1pW4

http://www.facebook.com/event.php?eid=162413710500629