What a day! I got to Starship at 7.45am, as Sam was on the morning theatre list. Two minutes in the door and I hear he has been bumped to the afternoon list. No problem, Sam and I will hang out, give him his bath and play. About 9 the surgeon pops in and I complete the paper work/consents with him and he informs me that Sam needs 100 mls of cream into his J tube. Now as Sam is so medical I am assuming 'cream' is some code word for a secret formula. Well it turns out just normal cream you would pop on to your scones with a cuppa! This was to be given at 11am over 30 mins. 10 am arrives and with it a ward nurse to say theatre have called and they have had two cancellations, so can we be ready for late morning..... sure, no problem... but now we aren't sure when to give Sam the cream... a phone call later it is confirmed that 'now' is good for the cream to go in.
11 am, post cream feed, a chlyohexidine bath and Sam and I are in the ward play room. Enter from stage left two . They casually ask how Sam is doing and I casually reply, ' pretty good - his chest is sounding much better and he has more energy'. Her face fell and she asks about his chest, and it seems clear at this point this is the first she may have heard of it. I confirm he was xrayed on Friday and has been on antibiotics...... 1 scurries from the room to check the xray on the ward computer and then dashes from the ward. 2 listens to Sams chest and is happy it sounds ok for Sam. 20 mins later 1 returns to say she has talked to two colleagues and the surgeon and is not happy to go ahead with the procedure. She explained the procedure involves collapsing the left lung, so they can check out the cavity/area around it. With his lung already compromised she was worried the lung may stick and not re-inflate... and that could be the start of a very serious situation and a long ICU admission etc...
At this point I was very glad the surgery had been cancelled! It gives Sam another week to fatten up (he hit 22 kgs today!) and get stronger, for what will be a complicated and long surgery. The teams were a bit frustrated today, as they have all been working so hard, yet with 1 piece of the puzzle missing the outcome could have been very different. Communication is always the ongoing challenge when living with people right? But I am so very thankful for the result today, and Sam has a week of hanging out, some time out each day maybe to play in another part of the hospital or at home with his sister - we aren't wanting to risk anything and catching a cold from being around too many people. If this operation can happen and the leak be found, the potential for his nutrition and health is huge... so we are playing cautious at this stage.
Next Monday 12 September, Sam will head back to theatre.... to try again!
This afternoon the Consult Liaison Dr swung by - now that Sam is older he is becoming aware that his medical stuff isn't the norm, so we are having some behavioural issues. He is also very frustrated at such a long admission and missing his friends and family, so having this team involved is good for Sams mental health. They raced cars and talked about home and his sisters and it was a good start, which I hope will enable him to help process some of his challenges and sadnesses.
Sam would love to have visitors, either at home (probably be home most afternoons from 12 - 4) or in hospital - please just text first to makes sure it works and we don't mess you around. Please also make sure you are all well - we love sharing, but only chocolate and red wine.... altho' Sam is still sharing fart stories - sigh!