Wednesday, January 28, 2015

Monsterville Visited Today!

So Sam has his new central line embedded in his chest.  The old one is in a pot for 'show'n'tell' - truly amazing how such a teeny tiny tube can sustain a child for 3+ years.

Sam went into theatre a little anxious.  He is now old enough and able to put words to his thoughts.

'Mum, I don't want to go to surgery - can't they just change my line on the ward please??'. 'I don't want to lie down under the big light in surgery - I'm frightened!'.

But we got him in with the fabulous anaethetist singing 'Wonky Donky' and agreeing with Sam's attempt at control: Sam, 'I am NOT lying down, do it sitting up!'. So Sam sat on my knee and the magic juice was given and he fell asleep on my knee and then we transferred him to the table..... then I left him in their hands and went and switched off knowing there was nothing I could do.

2 hours later and I head to Recovery and I hear him in the corridor - oh dear, as so often is the case, Sam is now in Monsterville as the reaction with the drugs had taken over!  He was shouting and telling anyone that spoke to ,'Shut UP!'. He was pulling on anything and everything, throwing things, rolling, screaming, writhing.  We got him up to the ward and tried to put the probe on his toe so as to monitor his heart rate etc.... it took 2 of us fully swaddling him in a blanket and pinning him down to get it on and a reading done - and this was done after 10 mins of trying negotiation, bribery, cuddles etc... At one point he shouted, 'I am going to run away and you will NEVER find me... ever!'.  I asked him where he would run to and he said, 'I'm going to run home' I smiled at his logic I explained I would find him...... finally after about 45 mins he asked for hugs and I sat holding him for 10 mins with him just wimpering and relaxing..... then sleep!

A 2 hour nap and Sam awakes totally happy and back to himself.  He doesn't remember a thing and was very happy to stand and check out the cars out the window and chat to his uncle Eddie that popped in.

Hoping to get home tomorrow as all went really well.  We will need to pop in in 3 weeks as the cvl has two lots of stitches anchoring it that will need removing.

As always, I am so grateful to fabulous friends that have opened their homes and lives to our girls - they are having such a fun few days at the beach/pool that it will no doubt be a let down coming home.  But I can tempt them home with the promise of Nana's birthday bbq with the extended family tomorrow night - good food and family is always a good card to play!

Thanks everyone - for praying, for caring, for texting, for having our girls, for the medical team that are so skilled to do crazy surgeries on my boy.... to Sam for being such an amazing boy that puts up with so much.... to God for sustaining us all.

Sleep well. X

Sunday, January 18, 2015

Goodby to a very special Grandad

On Friday we said goodbye to a very special Man..... I love this photo taken about 3 and a half years ago.  Both 'men' totally absorbed in the moment.  It's been a busy, special and sad week looking through photos and making preparations for the funeral.  Sam obviously didn't understand it all and we had many interesting discussions with him.  We had a very funny moment  when I was driving with Sam past the care home where Grandad had been.  The dialogue went something like this:
' Mum look, that's Lansdowne where Grandad lives...... no wait, he isn't there any more..... he's in heaven with Jesus...... What kind of car does Jesus drive?'.  It was truly hilarious and Sams perspective always welcomed!

We are off on a 5 day beach holiday today - all in need of a break and looking forward to it very much - sun, sand and no internet!.  When we get back Francis is off to L.A. for 10 days, and on 28th Sam is scheduled for a surgery at Starship - so it looks like 2015 is starting again!  Sam's surgery is just to switch his CVL which is embedded in his chest.  It has been in for over 3 years, which is fabulous, but they want to change it as a scheduled surgery before it breaks and is an acute admission. We are hoping it is just a simple over-night stay, so we can get back into home rhythm before Sam starts school on Monday 2 February - what a big day that will be!

Right off to pack for holiday - Sam says he is packed and ready to go - he has his Bee, a bag of cars and a fan (it is hot) - oh if only it was that simple!