Yesterday was better in some ways than I’d have hoped and worse in others.
The #%$# anaesthetist called at 6pm the night before – end result I burnt dinner talking him through T! He told me he was going to put T under through an IV – so there went all the work I’d done in playing with a mask all week! Possibly just as well as on Wed T had taken to handing it back to me with a cute “No, ganks.”
The hospital has a tiny car park – and I got a park right by the door so I figured that was a good sign! 30 mins into it all and T decided it was time to go home. It was heart breaking as he trotted out one of his very rare 3 word sentences “Go home please”. He lost the plot when they bandaged up both hands for EMLA, but took his pre med well :-) the nurse was amazed, she thought it’d be the other way around!
He got his long awaited “Ride bed!” to theatre – and flipped! I think he realised that something really big was about to happen and he got scared. He did his red in the face, rigid scream thing even before the anaesthetist got his hands on him. I had warned them he had a temper as he started to lose it and they were impressed :-)
Thankfully, because of my experience with N I had decided to opt out of helping to hold him down and just went to the head and talked to him and stroked him. The anaesthetist kept telling me he’d got into the vein without hurting T and I’m sure it was fear which made T react that way. I’m very grateful for the fact that he said once they started the anaesthetic he’d go to sleep fast but it was quite amazing how fast he went. The nice thing was, as he went the sobs subsided. I know it was the drugs but it felt like he’d calmed down before he went to sleep.
He was only in for 20 mins and the surgeon came and told me they’d taken 2 biopsies and that his oesophagus was mildly inflamed, not terrible but clearly not normal.
Although we’re supposed to be waiting for the biopsy results the surgeon was telling me he’d do the nissen in early June, we’d need to do a barium study etc. So I’d presume from that that he knows what he’s seen in there and he’s clearly certain it’s reflux.
Then someone I hadn’t seen before came running into T's room and asked if I was his mother and took me to Recovery. I was worried until I got a few doors down the corridor and I could hear him screaming. I figured at least he was breathing! Even the surgeon was back in Recovery to try and help! As soon as T saw me he tried to climb out of the bed, showering monitor leads as he came. So they got a comfortable chair and I just sat with him as he calmed down and went back to sleep.
He slept for a bit more and then by the time we went to go home he’d been giving his nurse kittens by bouncing on his bed and making the whole thing rattle and shake! He thought it was hilarious – even though he did actually cut his leg on a toy on the bed in the process!
He’s pretty up and down today but reasonably happy – though his throat sounds sore and almost croupy.
So now we have the battle with the paed and the dietician about how T is to be fed.
We’re seeing the GP today for a weigh and measure and I’m going to ask her to get the paed appointment moved up – and also to get a clear and firm letter from the dietician explaining for the paed why she thinks T’s eating needs more serious addressing.
We’d like to get to see the paed in early to mid May – by then we’ll have the biopsy results and had a chat to the surgeon. We want to know exactly how much weight the paed thinks T is allowed to loose, what she thinks he’s actually going to be able to eat for those 6 weeks post op – we know the only thing out of his staples is formula. And have a firm plan in place to swing in immediately T loses that set amount. It’ll be mid winter and it’s not a time to stuff around with his weight. We also have an appointment with the feeding therapists for the 22nd so that might help too.
So the procedure went well and he’s clearly not too traumatised by it. I’m now telling him he’ll have to have another “Ride bed” later. I had a fascinating conversation this morning with him “Tummy fix?” “No, T, tummy will be fixed later. You need to have another ride on a bed.” “No, no ride bed!” “You need to have your tummy fixed like N so you need to go to hospital and have another ride on a bed.” “Oh, k.”
Who knows what he understands really, but I’ve got to try, and I can’t tell him it’s all over when I know he has to go back, even if it is a couple of months away.
Eleanor.
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