Monday, 20 December 2010

Diaphragm Clinic Update

When Lewis was discharged from NICU in January, we were told he'd go to the diaphragm clinic every month to start with, then it would go to 3 monthly, then 6 monthy then hopefully yearly, so he was discharged in January, we went to the diaphragm clinic in February.....and haven't been since....till now, so to say it's long overdue is an understatement, always been worried incase his lungs weren't quite growing as they should etc.......
so Friday he had Diaphragm clinic, got there to be told he didn't have an appointment....OMG yes he does and we're not going till he's had it!!!! we got seen lol, first visit was to the weighing and measuring area, pleased to say that since following the same percentile all year, he has now climbed up to the next one and his height is on par with his weight, so he's perfectly proportioned, he's underweight for his age but at least he's on the charts as a LOT of these babies aren't even on it, plus he's a wee shortarse like his parents :)

Next was Physiotherapist and Speech and Language Therapist (SALT), SALT is very happy with him apart from not eating but that's such a common thing for these babies so it's nothing out the ordinary for a diaphragm baby and they know that, she's going to get in touch with the SALT from where we live, as she seems to have went AWOL on us???
Physio also noticed what we have, he's flat on his right foot which is fine, but his left foot he ALWAYS goes on tiptoes, so she's referred us to physio where we live (which we should have been referred to when he was 1st discharged from NICU cos of the delay in things for him given that he was hooked up to life support so long! also another few wee exercises she gave us to do with him as he won't go on or near his tummy at all we need to learn him how to sit up from lying a different way etc, she's pleased with him every other way though and SALT is happy with his 'speech' and vocal sounds.

Next visit was to Xray, he was sooo good, didn't kick up a fuss when the sand bag was put on his legs to hold them down or when i had to hold his arms and head, he just lay there, it was over in seconds, not once did he complain about being dressed and undressed for every area, such a good wee boy. I will write about the Xray results in a second.

Next was in to see his consultant, he's happy with the shape of his chest and though it's a bit messed up it's only as much as he'd expect, the big dent he has is due to there being muscle missing as that's what they used to repair his diaphragm, we've to stop his final reflux medicine, well to wean it down first lol, i told him about Lewis still refluxing past his fundo 2 months after he had the operation, he says that's fine as it's only very small amounts, he said it's like a safety feature, he has to be able to get past it if he's ill and needing to be sick etc so of course he can still reflux through it but it is only a tiny amount and certainly not on the scale it was, that was BAD, then he brought the xray up on the screen so i went for a peek,

well it looks absolutely fantastic, both his lungs were squashed during the pregnancy and underdeveloped, no1 thought he even had a left lung, until he had his repair when they found the left lung was just a bud, so barely anything of it at all......so in a year, this wee bud has grown sooo much, the right lung is bigger than left still but it's not far off it....they'll continue to grow for another couple of years and if it continues to grow at the rate it has been then it will be close to normal, he said it won't ever be normal but it'll be soo close it won't matter :) the best news ever, they're so pleased with him, he's to go back in 6 months and he'll have his Gtube taking out and replaced with the more discreet Mic-key button (and a friend has found some fab wee covers for these) HERE xx Also he said the diaphragm repair is holding up well so no obvious signs of imminent reherniation, though he says that's not to say it won't happen :s

So that's the update, 1st time we've seen his lungs in sooooo long and they're doing fab, he's doin fab he truly truly truly is our MIRACLE sunshine warrior :)

MERRY XMAS xxxx

Friday, 10 December 2010

December Update

So i'm not getting to update the blog as often as i should, but there's not so much happening in order to update so often, which is a good thing, no news is definitely good news as far as CDH goes.
well Lewis is now finally on the move, he's bum shuffling and can get wherever he wants to go, over to his toys to tip every single 1 out on the floorm, the chaos lol but it's great it's just the best thing ever to see him doing this, so funny seeing him 'bumming' along the floor xx
At least he has found a way of getting around, lack of upper body strength due to the surgeries means he struggles holding his weight on his arms, and also it's uncomfy for him lying on his tummy with a big old feeding tube poking out of it, plus i guess with his tummy being all misshaped can't be too comfy either. round the time he 'should' have been learning to get around he was in having another major operation so that set him back. better late than never though.

Finally the runs have stopped, like the day before we got his feed changed to try and stop it lol, he is now on Frebini which has a higher calorie content than the infatrini, so it means the volume has been cut a lot, which is great just what i wanted since he started throwing up past his nissen fundo, so back to the cycle of being fed, gagging, choking, bringing up feed, aspirating into his lungs, so coughing mucous up from his lungs trying to clear them ugh, hope so much he will be able to cope with the lesser volume of the new feed, therefore no throwing up past the nissen fundo, therefore no aspiration, wouldn't be called a rollercoaster if things ran smoothly though.
Talking of the new feed we had our 1st delivery of it this morning, not 1 spare bottle, they clearly don't take into account for spills etc or the fact that these bottle never have exactly 200 mils in them, so means what we end up short with come the end of the month i'll have to make up with his old feed which luckily i have some left, but that won't last forever either, we had this discussion when we 1st started getting his old feed delivered and after getting onto the dietician about it changed it so we'd have some spare, so here we go again!! stupid extra stresses we don't need and shouldn't have to worry about.

He has an appointment at Yorkhill on the 17th, for....wait for it..... the CDH clinic woohoo effin finally, the aftercare is bad, he hasn't been to the CDH clinic since february, 1 month after getting home from NICU, terrible. We're fortunate he keeps good general health though, he definitely has my immune system, both Ben and Ricky have been sick in the last couple months and neither me or Lewis has had anything lol, Lewis has had his Flu jabs this year but isn't to get the RSV 1 which i'm gutted about as we all know what RSV can do to these babies with delicate lungs, hell i know what it can do to a healthy baby after meeting a mum when we Lewis was in.
So as he's not getting the RSV then i'm not taking him anywhere we don't HAVE to go, missed the health visitor clinic this week, just not risking it, i should really invest in a set of home baby scales so we can keep an eye on his weight for the dietician.

So that's about it for now, we're making this xmas like Lewis's 1st xmas seeing as he was in NICU last xmas, so it'll be Lewis's 2nd 1st xmas this year lol and he's going to be very very spoiled :)
 

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