Hi All,

Thought I'd send a message to wish you all a happy new year.
So far, our new year has not been very happy as Niamh is very poorly.

Over the last 3 weeks she has been suffering from severe dystonic spasms that have been making her scream and she has been needing increasingly more sedation as the weeks have gone on.
Building up to a climax between boxing day and new years eve when she screamed continually for 5 days and her sedation at full capacity was only giving her an hour rest here and there. Her morphine dose has been doubled with no effect.

She stopped tolerating her feeds on new years eve and she is now not tolerating dioratyle either. (it just builds up in her stomach/jejunum and then bursts the stopper open on her gastrostomy and floods out again.)
Her kidneys also appear to have shut down as she has had no urine output for 3 days.

She is requiring 6 litres of oxygen to keep her oxygen saturations in the 90's.

She has now been sleeping (without sedation) since new years eve and she cannot be roused at the moment. The pallitative care team are coming to visit us this afternoon.

Just wanted the religious ones of you to pray for her (I lost my faith after having Niamh) but at the moment I think we need all the help we can get.

love to you all
Alison