Adventures in Surgeryland - again...

Oh yes, Life's been back to it's old tricks and yes, despite not having set foot in a private hospital for 2 years (T's last foray into an operating theatre was at the public hospital) I was recognised by both ward nurses and theatre staff!
You know you frequent these places too often when this kind of thing happens.

So T's feeding tube has been moved. That decision was only made about 3 weeks ago so it came up fast and didn't give us too much time to get mentally prepared - or too nervous I guess. But when it's billed as the last thing they can think of to help and after this they are out of ideas then there's a heck of a lot riding on it and that's enough to make you feel like a cat on a hot tin roof, even if it is a pretty minor procedure and described as 'non-invasive' by the surgeon. Um sorry, even if it's laparoscopic it's still my kiddo you are cutting into and that feels invasive to me!

But T was obviously very keen to get rid of the pain and retching he's been living with for the past about 10 months - he woke me on Thursday morning with "Get up Mummy, It's Surgery Day!"
He was very positive, almost enthusiastic with only the odd quiet moment for most of the day. He fell asleep in the car on the way to the hospital although I have my suspicions about that being an escape technique rather than being so relaxed about it all!

And so it was a bit of a challenge for me to keep the positivity up for him - but we did it. He'd obviously been visulising 'the gloopies' packing their bags for a while as he told me a story about them and what they were packing.
He only started to fray around the edges as he and I changed to go into theatre and he got very quiet and all you could hear were these deep, shaky breaths and when you looked, this little jaw set but shaking at times with the odd tear sneaking down his cheek. He was like that as we waited him his room, pulled himself together on the way to theatre but as we waited outside he started again. The theatre nurses were very impressed with his bravery as they could see how close he was to bursting into tears.

It was only as they stated the IV to put him under that he lost the plot.
He started screaming, not fighting much but screaming and screaming. The anaesthetist was assuring us over and over that it couldn't be hurting him as he'd had lots of EMLA cream to numb his hand, that he was in and it was okay and so on. But still T screamed.

As I stood at his head trying to comfort him and stroke his head, our wonderful surgeon was beside T talking to him and stroking his cheek too. I turned to him and commented I was sure T wasn't in pain but that it was just the impact of everything catching up with him.
He was under quickly and I got to do the lonely, anxious walk back to the room to wait.

I HATE this bit.

I HATE driving them into the hospital, it feels like you still have an option not to do this to them but you are voluntarily handing them over to have pain inflicted on them, essentially you are hurting them. But once you get there and you sing in there is a relentless, inevitability about the process and it just happens, there are no choices any more.

I HATE taking them to theatre, watching them go under. That has never got any easier, even though Thursday was the 7th time in 3 1/2 years. I always shed a little tear leaving them, it makes me cry just thinking about it.
I trust our surgeon absolutely - obviously. He always works with top notch anaesthetists (Thursday's was also an intensivist) so I know the kids are 'safe'.

But that walk back to the room which always seems 3 times longer than going to theatre, looking at the space where the bed was and should be, waiting, watching the time, listening for the surgeon in the hallway coming to tell you how it went - that's the nightmare bit.

Two of T's surgeries have been simple scopes - 20 or so minutes a piece tops.

His first one I had a horrible fright when they came running to get me - it turned out he'd woken up as mad as heck and they needed me to calm him down!

His fundoplication, I had a horrible fright when someone came in when I knew it was only part way through the operation saying they'd had a call from theatre. Turned out they needed another nappy!

His last scope went smoothly - I got to Recovery and discovered him eating! I was only concerned they hadn't checked the iceblock to make sure it didn't contain anything he was allergic to!

This time the operation was supposed to be only 45 minutes.
45 minutes came and went.
1 hour came and went.
1 1/2 hours came and went.
By this stage I'd given up pretending to read, cross stitch, lesson plan, anything. I was pacing the room.
I was just about to go and find a nurse when the surgeon came in, nearly 2 hours after the surgery had started.

He normally comes in right away, often still in scrubs, on one occasion still in his surgical gumboots! This time he was dressed in ordinary clothes and I know he had a full list that day but that he'd checked the other patients and T was his last one for the day. So it won't have taken the full 2 hours but definitely took much longer than expected.

He described the operation as hard but that T had remained stable throughout - always good to hear but always makes me wonder if they had anticipated that he wasn't going to be.
Our surgeon has a wonderful way with words. I've noticed that time and time again.
He described T's stomach well and truly tethered - which is what he thought was the issue - but that separating things out as like chiseling through concrete.
At least what he found was consistent with it being the problem. If we had drawn another blank then it would have left us with no answers and so no treatment at all.
He said that he'd managed to free most of it but there was still a little tethered but that he hoped it would be enough to help T. The new tube has been placed much more centrally on his chest and higher in the hopes of giving him a little growing space.

As he left the room he said he hoped and prayed this would be the answer for T.

And so now all I wanted was to get to Recovery to see T. But I had to wait another 30 minutes for that and it was another hour before he and I got back to the room.
They weren't too happy about his oxygen saturation levels in Recovery, and to be honest neither was I. He was sitting on 96% which isn't too bad but they couldn't get him to bump them up. After his surgery W was satting in the high 80's - early 90's and that was ON oxygen so this was better than that. But he'd complain of feeling dizzy and then go back to sleep. So in the end they put an 02 mask by his face and gave him blow by oxygen - that promptly brought him back up to 98 -99% but he'd drop to 96 every time anyone removed it or he moved his head away.

So he spent most of the night with blow by oxygen.
The first night was a 'fun' night as I expected. IV drip chamber needed re-filling every 2 hours, nasogastric tube needed aspirating every hour, his obs needed doing every couple of hours as well - particularly with his sniffing oxygen to get by!
We did manage to get all the cares in line though so we didn't have a check of the iv in between ng aspirations etc. I think I slept through 1 of the ng aspirations so got 2 connected hours at one point. Otherwise it was a wake-up at least very hour and sometimes T needed me in between.

He didn't get his ng tube out until nearly 12 midday on his first post op day and he couldn't start to eat or drink until then. It was pretty clear from the state he was in, the surgeon's comments, the fact that he wasn't shedding tubes until late, and the fact that I wanted to be absolutely sure feeding with the new tube was working well before going home, that he was going to score a second night - despite the fact he was only booked for the one night.

We made slow but steady progress on the first day post op and he was starting to eat minimal amounts by that evening. He was SUPPOSED to be eating mashed potato but threw a tantrum after a couple of mouthfuls wanting brownie. The surgeon had laughed when T had asked him when he could eat and if he could have brownie.
I'd given in and given him a small bit of brownie in exchange for him eating 4-5 mouthfuls of mashed potato.
The next morning he ate an entire weetbix from my breakfast tray - thereby stealing half my cereal!

We'd had some minor issues with nausea but that was resolved by stopping his gastrostomy feeds for a couple of hours and then starting at a slower rate. The absolutely thrilling thing was the total lack of pain with eating!
His first night home he ate 80g of spaghetti bolognaise and commented delightedly "It doesn't hurt Mummy!"

His eating is making slow progress but it is progressing and when you consider that he only started eating post op 9 meals ago that's not bad. We were making nice progress on his increasing tube feeds but seem to have stalled a bit at the moment. It is challenging to get his required 1000 mls/24 hours in at the current rate and I am concerned about weight loss, particularly since we all had a tummy bug a few weeks ago and he lost half a kilo then. But, having gone through the surgery, T has had to deal with the pain and the poking and prodding - only occasionally rebelling and screaming when someone wants to check his sites - we owe it to him not to push and put him through any more fear and pain.
He wants to eat and he has kept on trying, courageously, through it all and so I can't see him giving up now!

This is apparently an unusual complication of rapid growth with a gastrostomy tube. It's just typical that T would get hit with something unusual.
I'm working on the basis, at the moment, that if it happened once, it could happen again and so the clock is ticking to get him as far off the tube feeds as we possibly can. However, pushing too fast too soon can lead to other, major issues and I'm not going back to that.
I'm hoping that the phenomenal growth we saw after the first tube was the wonderful, mythical 'catch-up growth' I've heard so much about but never seen before. If that's so then he shouldn't shoot up so rapidly this time and so the issues may not pop up again or so fast.

But we're back to square one in terms of getting enough nutrition into him - right back to where we were in Feb 2009. The only thing that makes it not completely square one is that, back then, T didn't trust eating and didn't want to eat. It took 6 months out of the about 14 before the dreaded 'gloopies' started before he even wanted to eat. We're not at that point this time. He likes to eat, wants to eat and had been trying to eat despite the pain even as late as the day before his surgery. So we're ahead on that front.

My other big fear for T is to do with after he's finished with the gastrostomy tube.
If things were tethered once before and still partially tethered and he needs to tube for a good while longer - what's going to stop it getting more tethered, just enough to cause passing symptoms which could get worse in the future even if the tube is removed? How will we know that the stomach has returned to it's proper place with no adhesions once the tube is gone? Could T be looking at a 5th surgery, just to be sure it's all returned to normal afterwards?

I think our surgeon is wonderful and I wouldn't want one of my children operated on by anyone else now but I'd love to see him socially not surgically!