Monday, March 17, 2014

Chocolate, Broccoli and Pizza

The blog has been silent as I've just been too busy then too tired to write.  Sam took a sudden turn for the worse on Friday afternoon, spiking high temperatures.  The team acted quickly, but it meant that he needed a lot of investigations to try and find the source of infection.  His TPN feed was stopped, a peripheral line was put into his foot for maintenance fluid and his post op surgical line in his arm was used for replacement fluids.  His stomach was put on free drainage (picture a tube coming out his stomach with a bag collecting goop).  An abdo xray was ordered at 9 pm, so this involved me holding Sam on his side for 10 mins before the xray - felt like was in a rugby scrum wrestling with an 18kg weight.  Lots of blood tests etc, then after many doctor reviews it was 1am down to xray again for a chest xray.  Anyway it was a long sleepless night, which showed that possibly a small part of his left lung had collapsed post op (it often does) and this could be the source of infection.  He continued with hi-temps (hi-temps = hi vomitting) and a second long night.  After 48 hours of unknown and very little sleep I really hit the wall.  Francis returned to Akld yesterday to be in Starship with Sam and I returned home to hang with Jasmine and get her ready for school camp. We had a really neat night together and she left today.  I quickly popped into school and gave Candace a hug and kiss before school, as I hadn't seen her since Thursday.  I then went home and slept another 4 hours, ontop of the 10 hours I had just had.... so I am almost feeling human again.

Sam has thankfully turned the corner!  His temps are not going as high and he has the glint back in his eye. He is still on regular strong antibiotics to deal to the infection.  His surgery and bowel movements have become secondary to getting him well again and over this speed hump.

At 2 am one morning a new and different Dr came in to examine Sam - she had never met Sam before.  She was asking Sam where it hurt and he was randomly pointing at his chest, his elbow etc... I was concerned that the Dr actually seemed to be believing him, so I interrupted the Dr and said, 'please watch this'.  So I turned to Sam and said, 'Sam what did you have for dinner tonight?'..... He stared straight faced at me and said, 'ummm Broccoli, Chocolate and Pizza!'.  I turned and smiled to the Dr and that simple interaction had her understanding that not all that Sam says is reality!

Francis just called to say that Sams gastro outputs have dropped dramatically (that means instead of vomitting/draining out, they could be going down), which is what we want.  He has also done a couple of smudgey nappies.....

It's been a tough week - tiredness, physical exhaustion from restraining Sam, upsetting watching him struggle, disappointing as we don't see instant results.... but then I've learnt a lot too - patience is something that is definitely needed and I want quick results.... this is going to take time for his bowel to wake up and I am so quick to label everything as a 'good sign' or a 'bad sign'.... where it is just part of a long process.  It's been heart warming and amazing as friends have rallied around the girls and taken them into their homes - both girls have loved where they have been staying and the care and practical support has been amazing.  My dear friend Lynley continues to offer practical nursing help and relief so I can sleep and Sam loves hanging out with her.

The girls have taught Sam a knock knock joke - he doesn't get it, but has started telling the nurses and then wonders why they all laugh!  I'm hoping he will share it with the surgical and gastro consultants, as it is particularly timely!  It goes like this.... 'knock knock', 'who's there', 'Eyep'...... I leave you to finish it off and I hope it brings a smile to you.  We continue to pray that this will be a reality for Sam very soon!

Best wishes


The Doughertys said...

You are a true inspiration Shirl and Im guessing you had to do all that on your birthday. Hope you have recovered from lack of sleep and that Big Sam is feeling better each day. Love you fellas. xx

Juliette said...

Hi Shirley, I'm so glad that Sam's glint is back! He is a miracle boy. May every day continue to see improvements. Love to you all, Ju x