Wednesday Night

This afternoon at 4.30 Samuel was wheeled back into theatre for a 'procedure' - not surgery. This time it was with the ENT (Ear, Nose, Throat) team so they could put a camera down his airway to check out his larynx and bronchial tubes to see why it was so swollen. It was potentially one of three things: 1 just general swelling due to irritation caused by multiple and long term ventilation tube, 2 an anatomical problem or 3 irritation caused by acid reflux (stomach issue). THANKFULLY it was number 1! We are really pleased, as we are a bit worn out from horrible surprises and option 2 & 3 are more serious than option 1. So the outcome is that they will give him a steroid dose at midnight tonight to help reduce the swelling as they would like to extubate him tomorrow morning, then watch him over the day to see how he copes.

The downside of steroids is that it can reduce his ability to fight infection... and he still has infections in 2 of his wounds, so it's not ideal, but they have to also deal to his discomfort of the tube and potential damage to the airway.

This evening I had a lovely evening with my special friend and some delicious Baileys Cheesecake (!) and then went back and just sat and watched Sam for about 45 minutes. It was just a special time watching him - I love watching him sleeping and wondering what he's dreaming of as his face grimaces, chin(s!) trembles and eyes scrunch... was just lovely to watch and smell him - don't babies also smell delicious?! A light went on in my head tonight as I gazed at Samuel, that I just see him as 'Sam' - our wee boy, not defined by his problems... the times I see him as 'Sam with lots of bags and holes' I feel overwhelmed and lose sight of him just as Sam. I wonder how often I have seen people with physical problems and diminished them by not seeing them as 'John' or 'Mary', but felt pity for them as 'John in the wheelchair', or 'Mary with Cystic Fibrosis'. We're surrounded all day by the sickest children in NZ, with rare and difficult conditions and physical limitations, yet I see them hanging out and laughing and hassling the nurses and whining for ice-cream - they're just normal kids with more challenges than most.... but I know my normal response has been to pity them as I see the challenges and not their character and personality that is as vibrant and real (possibly more so due to all they've endured) as you and I. Then tonight as I read my bible this jumped off the page: 'The human spirit can endure a sick body, but who can bear it if the spirit is crushed?' - Proverbs 18 verse 14. Wow, that summed up my thoughts today and I hope I will learn to view people and respond differently as a result of our time here.

Sadly 2 of Sam's room-mates have died in the past 2 days, so we felt sober today as our hearts went out to those families and we could understand a little of their sadness and the reality of where we are hit home again.

But if Samuel copes well with breathing on his own tomorrow, he could be back on the ward within 24 - 48 hours, so that's what we're hoping and praying for.

With love and thanks,

Shirley