Thursday, 24 November 2011

Fundo Loosening Op = Fail

So we had a call from the hospital, again short notice to take Lewis in for his op to loosen his fundo! apparently the delay was because they were trying to get hold of a special pair of scissors they needed for the op, at the cost of £550 a pair which are single use, oops.
So we took him in for 2pm on sunday just past (20th November) booked him in and that was that, no idea why we had to go in then as he wasn't booked into theatre till 12.38pm the next day! so lots of hanging around, and poor Rucky was working the saturday night and he was staying in with Lewis so was knackered, Lewis wasn't for settling at night, but Ricky managed to get him to sleep about half 8, only for a nurse to come clattering around at his cot an hour later and wake him up! and that was him up till 3.30am!
He was to fast from 6am but Ricky said nurse came in and despite him telling her he was on his pump feed till 6am she took the pump away at 3am! so next morning, cue a very tired very hungry Lewis, i sent Ricky homw with Kaylah so he could get some sleep as he was staying in with him that night too, no need to say 12.38pm came and went without a peep, then at half 2 some1 came and told me was a delay in theatre....yeh i'd already figured that out! anyway they finally came for him at 3.30pm and i took him in and held him till he fell asleep with the gas, i hate doing that it's awful, so full of life kicking and screaming 1 minute and the next...nothing :(
He came back a couple hours later, Consultant came in for a chat.....the op failed, he couldn't remove the stitch! apparently it was just too close into a fold in his oesophagus and would have been unsafe to try and remove incase the oesophagus got damaged! to top it off, he changed Lewis's mini button while he was in as it was due changing (even though i was supposed to get to do it) and obviously cos he'd been fasting for so long, his stomach was empty and so they couldn't aspirate anything to be sure the button was placed correctly, so back to the ward Lewis came with the note, not to use his feeding tube!! great so how the hell do we feed him!! we don't, they put him on a fluids drip, i wasn't happy!! consultant had said we'll bring him back in january and try again for the stitch removal, this time though instead of going in the same way as this time, down his throat to get it from above, go in through his gastrostomy and try and get it from the bottom, if that failed then would have to open him up again, which he was really trying to avoid, having been opened in the same place twice already, last time for the fundo and actually extending his repair scar and nicking his spleen during the fundo due to everything being so stuck together etc was just a risk he didnt want to take if not absolutely necessary, which i totally agree with! off to xray the next morning for contrast study and to check tube placement etc

They used a syringe to put the contrast liquid into his mouth, forcing him into swallowing it, consultant was very pleased and surprised by the results, it showed the liquid went striaght through to his stomach very very quickly, not what we were expecting with a tight fundo, not what he was expecting either and it was him who done the endoscopy in august and discovered it to be too tight! soooo this means it's loosened itself off! wish we'd done the contrast before he went to theatre!! and thinking back to the few days before went into hospital, he has had a reduction of the coughing/choking/gagging and bringing up a LOT of sticky horrible mucous! meaning it's obviously been able to run right through into his stomach with the loosening! just before that reduction though he went through a week or so of being really bad when we were doing his feeds, screaming the place down and writhing around in pain! that has stopped as well and he's actually tolerating his feeds better than ever!! soooo i do think it was the too tight fundo causing the problems all along, we'll see how it goes though.
Got home on tuesday, and tuesday night in his own bed he must have been sooo knackered, he slept right through without even moving and till about 10.30 next morning!

He's doing just great, i just felt awful that he'd gone throught the whole fasting thing and then the theatre stuff, getting put to sleep etc for nothing, just wish we could have done the contrast study first but then i guess consultant hadn't expected it to change! none of us did, but oh well it's done now i guess and he's forgot all about it!
He's doing amazing the past couple weeks, he wants everything to try and eat, he's also taking a bottle with some juice in it, running round with it for couple hours and lucky if there's a mil or 2 out of it, till today, a whole 3oz of juice!! he's biting into things and taking the bites into his mouth, if they're too large for him (like bigger than a rice crispie) he spits it out, if it's the same size or smaller, he's SWALLOWING yay, he ate some rice crispies off Ricky the other day, started off just putting 1 in his mouth and he swallowed it, so then moved onto 2, then 3 etc, but got to about 5 and he started choking on them, cue a whack on the back poor wee thing but out flying came a few rice crispies! he does the same with crisps, gets a bowl and asks for crisps in it, hula hoops arehis favourite, he'll stick it on his finger and lick away at it for the next hour or so until it's quite soft and then he's taking a bit in his mouth, bigger than he can handle and chokes on it! i hate all this choking, i really just wish that now he has this fabulous massive interest in food he would let us start at the bottom with baby foods and 'wean' him and then give him solids, just like you do when learning a baby, cos basically as far as eating goes he is just at that stage! but nope he won't have that, will only take finger foods, continues to bite off more than he can chew and then chokes on it in the panic trying to eject it from his mouth, all well and good thinking just give him smaller pieces, oh no he won't have that, he'll have the things as they come out the packets else he'll throw a wobbler and not have them at all, so just have to supervise closely! he is doing sooo amazingly well though we're absolutely delighted with his progress :) and now he can ask for what he wants i think maybe makes it easier for him, he can say he wants crisps in his bowl, or some juice! he's just great, talking in short sentences too and coming out with new words all the time! he is a stubborn wee man who definitely knows his own mind :)

Wednesday, 9 November 2011


2 years :)

This time 2 years ago i was spending the last night at home with our baby safely tucked up in my belly, for we didn't know which path our journey would take us, 2 years ago tomorrow we checked into hospital ready to begin induction, 2 days later  after showing no signs of wanting to come out of there i had my waters broken and hooked up to the drip to bring on contractions, 2 hours after that begin and after him getting into distress and his heartrate dropping i was rushed to theatre for an emergency section, then they whisked him away, 5 and a half hours passed before they would let us into the adjoining sick kids to see him, while they hooked him up to his life support. convinced he wouldnt make it past xmas, xmas came and went and he fought on and after the longest 2 months ever we brought home our wee miracle ray of sunshine Lewis. The past 2 years has gone so fast but i am so lucky to have him, he is just the best wee boy ever, nothing gets in his way, he's a typical proper wee boy, into cars and trucks and all things boyish, loves a bit of rough and tumble, much to my horror, he's into toy story at the moment and anything to do with cars and animals especially cats and puppies! he has self taught some makaton signing and coming on a treat with his speech. Still 100% tube fed and loving nursery, he has made big improvements since starting nursery with the sensory issues he has with food, not gagging and retracting so quickly from it, but willing to touch and lick most things now.
We had his nursery review on monday and they are so pleased with his progress, said he's such a lovely wee boy, and couldnt believe just how clever he is, not sure where he gets his brains from but he seems to have a real lot of them :)
Finally got his appointment for hospital too, he was supposed to go in and get a wee op to loosen his fundo off as its too tight, consultant wanted him in within 6 weeks, but that 6 weeks ran out 6 weeks ago!! the appointment is just because his consultant wants to see him at the clinic and discuss the wee op etc just want to get it over for him now and we just worry that then it'll end up too loose and the reflux will start again :(
He's still not much fussed for Kaylah but we know he loves her really :)
We're taking him to the sealife centre for his birthday on saturday as he also likes fish and things, we have our own in a big tank at home and he loves them.
so proud of the toddler he has become, even if his terrible two's are quite terrible at times but i wouldn't have him any other way, he's here and he's happy and if he's happy then i'm happy :)
 

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