HI Alison,

I.m thinking of you and Niamh. Poor Niamh and poor you, have you had
any sleep? I will pray for her, and your family.
Remember we are all here if you need us. We might not be able to be
of any practical help, but will do what ever we can.
Take care Margaret



--- In MPEIparentsupportgroup@yahoogroups.com, "Alison Maguire"
<alisonmaguire@...> wrote:
>
> 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
>