Tuesday, April 5, 2016


Yesterday we waited most of the day to head to theatre, but at about 3.30pm were told it wouldnt be happening - but we would be early on the list this morning.

I had been prepping Sam about how I needed him to be brave and that screaming and shouting upset all the kids on the ward that could hear him. He understood he needed to be brave.... So he made a deal with me and we walked down together hand in hand ... Him in his 'Shark' dressing gown ... And me in my clothes (sadly I dont have a mathing gown, but be assured if I did I would have worn it today with great joy if it would have helped Sam).

Hr came back with his left arm bright pink with iodine, as they had tried to find a vein, but gave up and found a usable vein in his right arm. So he currently has a pink arm and a white arm, as it is bandaged to secure the line.

He woke relaxed and happy and it was amazing! He has had a lovely afternoon and looks forward to escaping home for a few hours tomorrow. The plan is for discharge on Friday - roll on the weekend!


Sunday, April 3, 2016

Sunday Night Update

Phewf, what a few days it has been - we are emotionally and physically tired.

This past surgery was different to the rest.  Sam is so much more knowing and when I talked to him about going for surgery he went beserk.  When the orderly came to take him down he was screaming (literally the whole ward could hear him), 'I DON'T WANT TO GO FOR SURGERY, I'M NOT GOING'.  It is hard forcing your kid to do something that literally is needed to save his life - the sepsis was consuming his body and he needed the line out that it had latched on to.  But a little 6 year old boy doesn't understand that when he has a high temperature, feels miserable and is scared.

Post op he was slightly better than normal.  We left for theatre from room 21, but it was felt better we were nearer the nurses station for closer monitoring, so we returned to room 5.  Bizarrely the channels on the tv vary according to which room you are in, so we left with Disney Junior available, but then it wasn't!  He wrestled and screamed for about 20 minutes wanting to go back to his old room.... it is hard work forcing him to keep his nasal prongs in, which are unpleasant, but necessary...

So the hard happened and yet at the end of the weekend it is a very different picture.  The medical teams are thinking hard how to increase the calories in his enteral feeds and how to be creative to get fluids into him, that he may not even need another line in.  Currently he only gets 16% of his fluids and calories via his central line (well he did before it was pulled out).

Yesterday the plan was he was on the acute surgical list for Monday to get a new PICC line in.... but in the last 24 hours the teams are suggesting they meet on Monday to brain storm options to see if it may actually not be needed.

This is SO huge - the potential for his life without a CVL is incredible to think of.  He would be less at risk at awful sepsis like he has had twice in the last 3 weeks, he would be able to get wet/swim, we wouldn't be tied down to the clock (as much!) etc etc etc...  

At point of writing we genuinely have no clue what tomorrow holds for Sam - we are in the hands of the medical teams, but we are really optimistic for change.

2 nights ago I had a chat with Sam that rocked me.  I was tucking him in and he was pulling on his nasal prongs.  I told him to leave them and hopefully they would be able to come off the next day as he was getting stronger.  I cuddled him and told him I was so proud of him, so proud of how brave he had been even when he has to have things done to him that aren't very nice.  He paused and said, 'Was Dad brave when he was a little boy in hospital?', I explained that Daddy hadn't been in hospital when he was a little boy. 'Was Jasmine brave like me when she was a little girl in hospital?'... and for each person he asked me I explained that neither Jasmine or me or Candace had been in hospital having operations like him.  It was quite a weird/special/sad/intriguing moment as I could see the cogs ticking over in his head.  I was intrigued as it seems he thought that what was happening to him must have happened to all of us.  It seems he is beginning to see that his life isn't the same as ours.  Maybe he thinks the same about food - he sees us all eating, but maybe he thinks we were all just like him once and then started eating...as he gets older the conversations and thoughts will no doubt develop. I do feel sad for him as he experiences pain, needles, drugs, poking and prodding at the hands of many..... such a necessary thing though.... I cry in private, Sam needs me to be confident and upbeat. Yay for tears, or I would implode.

This afternoon Sam and Francis escaped home for a few hours, which was great.  Potentially Sam, if no surgery is required, will be able to get to school this week, as it is only his 8pm dose of IV antibiotic that it keeping him in hospital.  We are looking forward to having Grandma to stay from Tuesday, which is a total blessing as Francis is away for most of the week for work, so if I am in hospital sleeping with Sam each night, Grandma can be playing scrabble with my girls - she always wins, but they like the challenge.

Who know what your week holds - rest up in the fact that the Lord God, maker of Heaven and Earth is watching over you and has plans for you. 

X Shirley