The last 48 hours have been non-stop being with Sam, trying to keep him settled and comfortable. The amount of people through his room is in the dozens..... so let's recap.
On Tuesday Sam went into pre-op around 12. At 4:10 the surgeon called to say he felt it had gone really well and that they had downsized his bladder. It used to hold around 180 mls, now it holds around 100. I didn't get the call from post-op until after 5, as they decided to also take some chest xrays while he was anaethetised.
The first 12 hours post-op was a delicate juggle between pain relief (given via epidural), blood pressure (which was nervously low), oxygen requirements (was on 3 litres of 02) and fluids/nutrition..... and it as a nervous and delicate time as one was altered slightly and the rest would respond or not... so something else was altered and Sam's vital signs would zig-zag precariously in and out of normal and concerning ranges.....
I was so impressed by the team work - surgical, pain team, nurses, respiratory and gastro teams all working so closely as each field of expertise was required to keep Sam ticking along.
Sam came out of surgery with 5 drains out of him and 3 lines going in to him - he had more plastic on him that the average Tupperware Party.. but as of today we have removed the one drain that was really causing him discomfort. Since this came out he has been more settled.
Yesterday Sam was grumpy and rude to anyone that came in the room. Today he turned listless, quiet and dozing a lot - I preferred the cantankerous Sam! He spiked a 38.4 temp, his breathing and oxygen requirements deteriorated, the chest physio was concerned with what they heard in his lungs so the consultants were called in to review him. It was decided to unclamp his chest drain to see if that helped - within 5 mins he had improved, so it was decided to keep the chest drain on free drainage to give him a break.
So tonight he is settled and sleeping. He still has a long way to go, but he continues to make us all smile. Yesterday Sam was telling the surgeon off for making his 'mitrofonoff hurt' and the surgeon struck a deal with Sam - if Sam smiled when he came in today he would take a drain out. So all yesterday although Sam was grimacing and sad and frowning we would ask him to practice his smile for the surgeon. His little lips would sort of curve/leer at us with his eyes still frowning - it was so adorable watching him trying to smile as he was so desperate to get the drains out, although clearly not feeling like smiling. You can tell you have been in here too long when you recognised the gait and tapping of shoes of each consultant as they walk towards your room..... well both Sam and I recognised his surgeon was approaching before he was seen.... As soon as he entered the room Sam broke out his 'smile/grimace' and kept the goofy look on his face until the surgeon met his part of the deal and took out a drain - It was the funniest face, this totally fake grin that definitely didn't have his eyes smiling.
The photos attached are pre- surgery - having a chlorhexidine bath and hair wash (clearly not impressed) and then his place of abode for the last 48 hours.
Sam and I were talking as he played with his cars and I asked him what else has wheels. Without hesitating he said, 'Beds have wheels'. It was an insight into his world as he is wheeled about the ward, up and down lifts and in to operating theatres. Sadly in his world beds have wheels.
The plan is he will still have the epidural in the next day or so, while the two other catheters are in. There is still uncertainty about the chest drain and a plan to deal with the chylorthorax issue.
I am missing 'my Sam', as he is a sad little boy at the moment... still gorgeous and so very brave. He is just amazing what he puts up with and we are so hopeful this surgery will heal well and improve his life by reducing UTI's...... but for now we will sleep, for that is a blessed thing!!