Week 8

Wednesday 10th December

I had a good night last night and got lots and lots of sleep. This meant Mum and Dad got lots of sleep too, so they were much brighter today.

First thing this morning I had a bath and a hair wash again, which was really ace. I kicked my feet around and Mum and Dad splashed around with me for ages. After my bath as I was wide awake Mum put on my favourite Nursery Rhymes CD and I sang along to ‘Doe a Deer’ with her for ages.

Sue H came in about 9 O’Clock, but then went straight home again. Turns out she wasn’t very well and needed to get some rest. If Dr Pat comes in later I’ll ask him to go and check her over, because he’s very good at making poorly people feel better. Get well soon Sue, I miss our cuddles.

Mum says she has had some good news today from her friend Emma McDonald. Apprently she has had a lovely little boy called Archie and showed me his picture. Archie if your reading this -I’m glad you looked just as lost in your snowsuit as I did, they are a bit restrictive on movement aren’t they. Anyway hello and welcome to the world. Some advice - practice a really good ‘not impressed’ face and make your parents work really hard at entertaining you - let them know that from now on you call all the shots :-)

Brrrr, dry me off quick Mum

Tina the physio came in this afternoon to see me even though she is on annual leave! she said she missed me and wanted to see how I was doing. As soon as I heard her voice in the room I woke up and looked about to see her so Mum and Dad handed me over for a cuddle. While on her lap I told her I was OK but a bit fed up with feeling rubbish - I hope she doesn’t think I’m too miserable.

This evening I was getting really upset and tired. The nurses gave me some sedative stuff in my cheek to make me feel less upset and I had had my oramorph increased again to 0.28ml to take some of the pain away. I am hoping this will make me feel OK again so I can get a good night’s sleep. Night night.

Thursday 11th December

I had a very settled night last night but have been very drowsy all day, I think it must be the effect of these drugs. I have had lots and lots of sleep and spent nearly all day relaxing on Mum and Dad.

Not much else has happened today (not yet anyway) but I’ll keep you posted. Off for more sleep now.

Friday 12th December

Mum and Dad were very tired today because I was quite poorly all night so they stayed with me nearly all the time (I think I heard Dad say he had about 2 hours sleep). I slept all day today, except when Mum and Dad insisted on changing my nappy, all that cold air on your bits can give you quite a shock when snoozing.

My morphine and midazolam (sleepy drug) were put in a syringe driver at about 5pm today. The syringe driver has a tiny little needle which was put into my leg just below my little scar (from my muscle biopsy) which meant Mum and Dad could be sure I was getting the full dose when needed. This was much better than having the midazolam in my mouth because it tastes horrid.

Anyway, enough writing for today because I need to get some more sleep.

Message from Samuel’s Mum and Dad

The very sad and painful news is that Samuel passed away around 9.20pm today. He fell asleep on his Mum’s knee holding hands with both his Mum and Dad and was very very peaceful.

Samuel bought a lot of happiness to our lives and we have a lot of great memories and we hope you do too. We know he touched a lot of other peoples lives and feel extremely privileged to have had him for so long against the odds. He was a little fighter and gave us the special opportunity to get to know him and his wonderful personality.

He made us fall completely in love with him and gave us something that can never be replaced.

We will miss him greatly and never never forget him.

Mum and Dad xxxxxx

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