Goodbye and good riddance to 2009 - roll on 2010 and may you bring only good things!
As for a new direction, um, probably not. Except we are a reflux-free household now.
I haven't updated here since W's surgery so I'll cut and paste that one shortly. As per usual for our kids it was not as straightforward as it ought to have been.
But W is doing a remarkable recovery. He is now 5 weeks and nearly 3 days post op. On Monday he very carefully ate a roast dinner with no mashing or pureeing.
He also mastered eating chippies again. He's been able to eat rice for nearly a week and yesterday he managed toast with his scrambled eggs.
He has lost weight but I think he's also grown again - he's all arms and legs and angular - like that leggy pre-schooler stage.
The surgery experience Round 3 -
Hi All,
We're finally home!
He had a pre-med which made him really loopy - "Ohhh Mummy, why have I got 20 fingers???" Really funny and he was so happy and relaxed going into theatre. But sad he has no recollection of it as apparently the theatre he was in has the most advanced technology in the world for laparoscopic surgery - nowhere has better acc to a very proud surgeon showing us all the screens etc.
The surgeon had offered to do a dvd of the surgery for W (as they have the capability in this theatre) and after some thought W decided that'd be cool. Unfortunately the high tech space age theatre had a small glitch and the recorder didn't work. As I said to the surgeon I'd rather than not to work than anything else! But they did use the digital camera and took photos of the theatre and the surgery - interesting in a warped sort of way.
Anyway, surgery took 2 long hours and the surgeon came back and said not only did W really need that but he never wants to operate on one of our kids again as they have all been much worse than the tests indicated. Apparently the oesophagus had shortened due to long term acid exposure, the stomach had adhered to it, the oesophagus had adhered to his diaphragm and so he had to separate all of that before he could do the surgery - he described W's oesophagus as like concrete and it was tricker than he'd anticipated.
W spent 3 hours 15 mins in recovery due to being doped out of his mind, slow to wake with pretty low O2 sats - down in the 68 - 75% range - on 2 litres of O2.
So he spent the whole first night on O2 which was a bit of a worry.
Second night the wretched IV tissued and he point blank refused to let them put a new one in but that cut his morphine as well as fluids - and he didn't want to drink and was in a lot of pain.
The other two had come home on the third day and I was expecting W to do the same - iv out, O2 off, drinking etc. But his pain levels went through the roof and there was no way he was going anywhere. The surgeon came by twice that day and he was even re-visited by the anaesthetist twice. They finally found a opiate based pain med in a liquid form - someone had charted tablets...but he was also prepped for another iv line.
Thankfully he didn't need that and wound up only needing the new med twice - oxycodon.
It was also taking both a nurse and myself to get him out of bed just to go to the loo so there was no way I could take him home.
But by about 3:30 that afternoon I was getting some quick grins and the odd chuckle while he watched cartoons so I knew he was on the way back again. By the evening he was occasionally getting smart with me and managing a supported walk down the corridor.
So we got to go home today - around 11:30. He's in quite a lot of pain still but I think I can manage it better at home than they could because he only had paracetamol charted or the other strong drug they didn't really want to keep giving to him. They did try voltaren by suppository...but he was exceedingly unhappy with that! I'm alternating ibuprophen and paracetamol so he's getting something every three hours and that seems to manage it better than 6 hourly paracetamol!
He's struggling with eating - big triumph today was finishing one of those tiny cans of peach, apricot and semolina!
He's walking around hunched over like an old man but I've told him he needs to straighten up by Sunday - the surgeon also goes to our church and has said he'll see how he is on Sunday...lol!
W's insisting on going to church because he's in the Children's Christmas play and it's the last rehearsal then - and if he doesn't make it then N is his understudy.....
So it's going to be a longish road, but we expected that. It's clear now just how badly he needed the surgery. It's almost certain he'd have had major complications if it had gone on much longer and almost certainly have developed oesophageal cancer in his early middle age - and that doesn't have a good survival rate.
He's in more pain than the other two were I think - sleep deprived haze here - hourly wakings on Tues night to suction his ng tube but he was awake more often in pain or feeling like he was going to throw up, about 4 hourly - but more often due to pain on Wed night and then he slept better last night although he was restless - I think pain - but I didn't!
But the pain levels would make sense because of the extra work the surgeon had to do.
It seems that definitely T and W have been saved from the almost certainty of cancer thanks to the surgery and probably N as well - N was probably in the best state of the three and even he had some oesophageal adhesions and some slight inflammation. W's was so bad he even bled more than expected. T of course had an ulcerated oesophagus.
Poor poor kids.
I just feel so terribly terribly guilty. I should never have let him go untreated as much as I did. Each time before he went back onto meds he'd been complaining for a good few months and I buried my head in the sand. This time round he should have gone onto meds again probably a good year before he did but I was sooo tied up in T and then so adamant that T's surgery was the end of reflux in the house that I just couldn't bear to think about W. The pain he must have been in, even the surgeon's instructions to the nurses were to take any complaints from him seriously because he'll have a very high pain threshold from being in considerable pain for the past few YEARS.
Really, the kid should have had this surgery at about 18 months old.
Anyway, it's DONE and we're home!
There are times and W's surgery was one of them that I wish I didn't know as much as I do, reading some of the monitors etc. I just kept reminding myself of the NICU lesson we were taught - watch the baby not the monitors! It might show no heart beat but if the baby's pink and moving it's probably just a loose lead.
I was concerned about his low O2 levels but his lips were pinkish and fingerbeds looked okay and he could be roused reasonably - I pulled the mean mother trick and told him T was in his room playing with his toys and his levels picked right up and he lifted his whole head off the pillow!
So this year we continue boxing along with N's eating, T's eating, T's speech, N's behaviour etc.
However at least we do seem to have a few things off the alert list - W's snoring has completely stopped since his surgery. He now lies totally flat to sleep on one pillow only - the first time in his life to do so. And his cardiac issues have not happened again since his surgery so we may have solved that one too.
So that gives me head space to pursue the other two's issues in more detail, and to push P into doing something about his foot he hurt a couple of years ago - remember the nail incident anyone? It's still giving him pain and he really needs to go back to the specialist.
So that's our little road map for the time being!
Wishing all a good 2010.
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