Pre op we met with the surgeon, who asked whether we'd been told Hope needed a peg (feeding tube) or whether it was us that wanted one. I pointed out that it was hardly every parent's dream :0/
But this is why Hope had the op:
1-When she's poorly, she shuts down and refuses to eat or drink, which lands her in bigger trouble. And ultimately hospital.
2- at the best of times, Hope does not drink enough. At best 400-500 ml a day. Less than half of the recommended fluids for her weight /age (100ml per kg body weight. So 1.2l)
3- aspiration. It happened. She got pneumonia. We had a study done that shows She's 'at risk', 'showing signs of early aspiration'. Personally, I think she's ok most of the time. But when she's poorly, or refusing fluids.. It's more likely.
4- I'd rather now, a planned surgery, than wait til we really need one.
5- though hope will eat orally, it's a very useful back up tool for delivering the ketogenic diet.
6- it'll stop all of her foods tasting like poison. Because previously the only way we could get them into her was in food to try to disguise. But I know she tastes them.
All that said... There was one major concern. The general anaesthetic. Last time (just the skin and muscle biopsy) there were several complications following, including the pneumonia , acidosis, dehydration etc.
However, now we had the diagnosis, so much more was in place. A plan from the metabolic specialist at the evelina, which included pre and post op fluids, no glucose. Plus she was in the ketogenic diet...
What's the saying? 'the best laid plans...'
These are the things we didn't expect:
I didn't expect (though should have) that we'd have such a nightmare getting Hope canulated. It's never an easy task, which is why I gave the junior doctor sent to do the task one chance. Obviously he failed. 2 senior house officers tried and after several bust veins and a bruised baby girl from so much squeezing, they admitted defeat. Round 3- the registrar. Determined as she was, I had to insist she stop after about 6 attempts. I think she was relieved, though perhaps a little defeated. Eventually a surgeon was successful after a couple of attempts. Not a nice experience for mummy or honkey though. And it was mentioned by a couple of doctors that perhaps we should consider a 'port' (a permanent line for IV access).
Neither We didn't expect Hope to come back after the general anesthetic and not be able to rest because of seizure activity jerking her awake. 12 hours later she was given via IV Phenytonin to stop the fits.
We didn't expect the Phenytonin to cause her limbs to tremble.
When she was still fitting the next day, still unable to rest and recover post op, that they'd give her midazolam to sedate her and control the seizures. Then.. She started de-satting and needing oxygen.
We didn't expect that she'd be sick anything that went into her tummy. Even 10mls of medicines were coming back up. This went on for days and she wasn't able to tolerate any feeds via her tube. Eventually chris bought up bags of her keto groceries and we took over the hospital fridge. Hope began tolerating small oral feeds eventually.
What I really didn't expect, is that after being discharged later than planned, that nearly 3 weeks later we'd still be struggling with sickness and reflux. Problems we didn't have pre-op.
I really didn't expect, that nearly 3 weeks later, I couldn't put more than 50mls in the PEG without her throwing up :0/
I didn't expect to question whether we'd done the right thing. This was meant to be a solution. A prevention.
I'm Told these are teething problems. I really hope so.
What I learned from Pageants and Jude
1 week ago