Feelin better today

lewis is much better today compared to yesterday, he's had the continuous morphine stopped but is still connected to it incase he needs a wee boost, they're stoppin his epidural tomoro as well, and today they've started givin him stuff through his new tube into his tummy just startin off with dioralite and i think tomoro they're startin to give him milk then we'll try and get his feeds built back up to what they were, got a wee smile off him last night which is the 1st since before his op and daddy got him a spongebob balloon from the wee shop seein as he's spongebobs biggest fan i don't know how he's managin without his daily fix lol xx slightly more smiles off him today which is great to see, he's still in some pain and specially when he tries to cough etc, can't wait for him to be over this and back home such a brave wee man xx

Lewis had his fundo yesterday

Ok so i put the blog off public view but have put it bk on while lewis is in hospital, we came in on wednesday afternoon and lewis went to theatre on thursday mornin, i took him in and stayed with him till he was put to sleep, that was sooooo hard, he was so full of life 1 minute n the next minute there was nothin, broke my heart that did reminded me of holdin nathan, so still :(
So he was away from us about 5 hours his consultant filmed his operation, he was pleased with how it went though they had to open him up as keyhole wasn't possible as his insides were just too stuck together, he managed to unstick everythin from his tummy but tore his spleen in the process but managed to stop the bleedin quickly, everythin will just stick bk together again, he was happy with how the fundo went but as he had to open his repair scar they couldn't give him the mickey button feedin tube so he's just got the peg
He had to go to high dependency unit after his op and was in a lot of pain when we got there, he was screamin so bad and his heart rate hit a very scary 220 it was just awful and heart breakin, he never cries he's always so happy, he had an epidural placed after his op so they had to give him a top up of that am upped his morphine and that settled him. As he was in high dependency i wasn't able to stay over with him so reluctantly i had to go home for the night.
When we got bk in this mornin lewis was looking much better, though i won't be happy until i get some of his usual smiles out of him, he got moved from high dependency to a normal ward this mornin, still on morphine and will have the epidural in till sunday then it has to come out and may have his morphine turned down a notch tomorrow
Thats pretty much it for just now he just has to rest and heal and we hav to get used to the new feedin tube and also the fact his scar from before is now longer as they had to open up his old repair scar and extend it a bit. He'll probably be in for another week and we have to work on buildin his feeds up as at the moment he's only gettin a little water every few hours. Will post a couple of pics xx the 1 in the shirt and tie was him on wednesday before we left for hospital, it was a rumour goin round the nurses about the cute smiley baby in the shirt and tie so they were all coming to see him when we arrived lol the other picture is lewis today xx

Lazy bones

it's 10.10am and my gorgeous lazy bones is still asleep, normally we're up at 8 so he's slept an extra 2 hours, he was awake briefly while i was doing his feed lol he's allowed though he seems to have got a touch of his daddy's cold, it's not as bad as we first thought yesterday but it's still there, i'm feeling it myself, i just hope his doesn't develop and he can get rid of it soon, don't need this hanging over him in the run up to his fundo.

oooooohhhh Lewis has a new word for the last couple days it's....hiya :), he's got a great range of vocabulary for his age :)

the S+L women was here again on wednesday, she was supposed to do some observations of Lewis of the way he is around food etc, but nope never done it, was here like 15 minutes and left, she's lovely though, but i just don't feel like we're getting enough help with this therapy thing but i don't like to complain, so have decided to just wait it out till the end of the month till Lewis gets his Gtube and when he's recovered etc we're going to try and come up with a plan of action, whether that involves S+L or not i don't know, will just have to wait and see if it actually becomes of any help to us or not.

it's been agonising for us to decide whether or not to go ahead with the fundo, the acid in his reflux is well controlled with medicines so he's not in any discomfort, he's ALWAYS happy and smily, so there's no obvious signs that he NEEDS to have the fundo done BUT we know he's aspirating badly, which is dangerous, so on that basis this is why he needs the fundo, all the side effects from it though are what scare me, it could make him miserable and suffer in various ways and we don't want it for that reason, but ultimately it boils down to the aspiration, knowing just how serious that is in that it could be fatal, so Lewis will have his fundo on the 22nd july, to any1 reading this i'd be grateful if you caould send lewis lots of good vibes for a quick recovery and minimum side effects from it :s

while we're there, once he gets his Gtube and we get to speak with the dietician i'm going to see if we can get a feeding pump for the night time, i'd like to try and give him most of his daily calories throughout the night, so that he can be free during the day to actually feel a hunger and gives him the chance to 'eat' just hope they agree, at the moment he's fed every 4 hours, he's getting packed full every 4 hours, he doesn't know what hunger is, never has

Tummy Time

yay looks like we've had a wee breakthrough, he's currently lying asleep.....on his tummy, on the floor, he can roll over and back again, has been for months now but he hates the pressure on his tummy so he hates being on his tummy, so he won't just lie there on it, so this is huge, i presume it's to do with the fact that his tummy is all odd shaped due to his prgans being put back in and nothing's in the exact right place making it weird shaped, so it really must be uncomfy for him to be on it, he was quite happy lying there for a while watching kerrang before he fell asleep lol
Nothing much else to update on really, still happy getting his teeth brushed, happy and confident sitting up by himself for a while now, still being  a typical CDH eater, S+L women due back out tomorrow so i'm setting myself up to be disappointed again when she leaves, ah well. 15 days till we go back in Yorkhill, meaning 16 days till Lewis's fundo operation and till he gets his Gtube, glad to know they got him a bed in the NICU stepdown ward where he was just before he got home for the 1st time, familiar territory for an unknown length stay.

Oh and Lewis now has his own Facebook page if any1 wants to add him, Lewis Boyd, or search SunshineWarriorLewis@gmail.com

Ps i've added a video below this post, Lewis all excited and licking his tray lol

05/07/2010

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hospital confirmation

got the letter confirming Lewis's hospital stay, and 'pleased' to say he'll be having his stay back in 3b, which is like the NICU stepdown ward. he was in there just before he came home, last stay he had in May we were in ward 4, i didn't like that much, hopefully this time it means we'll get a wee room rather than a pull down bed in the shared ward where you're not allowed to shut the curtains round the bed and have to listen to the other parents staying over snoring all night, not sure how long he'll be in it just depends on whether they can do his operation by keyhole but to be honest i think we and them will be surprised if they can do it by keyhole.
The mor i think about this fundo the more i'm unsure, like really really unsure, but Ricky says it's best for Lewis, the hospital says it's best for Lewis, in fact every1 says it's best for Lewis, every1 except me, but guess i'll just have to be quiet, hopefully we'll get to see his consultant beforehand and i can express my fears to him (i have a lot of concerns regarding the fundo), i am however looking forward to getting the Gtube, my baby will look even more beautiful without the nasty tube stuck to his face all the time, and it also means that no1 will ever know there's anything wrong with him and the stares and ignorant whispers can stop, would rather people just ask but they won't, i mean it's worse if we're out and we're feeding him, people stare, how would they like it if i sat and stared at them while they were getting their dinner.