For kreamkrackers

[dizzy34]

Hi dont worry, Chestnut lodge is fantastic and a wonderful school. i worked with them a lot when i was based in runcorn childrens team. The school is brookfields, i just dont like it.

keeping this at the top for you, did you get to see one of the nurses from woodview since we last spoke.

bump

sorry was just looking down the threads and spotted my name! i'm glad chestnut lodge is a good school, i had heard it's a good school but obviously i still worry. we didn't get in contact with woodview we will be having a review with the full team there again in a few weeks time. dp told me that they're unlikely to put dd on sleeping tablets with her having a cardiac condition and once she falls asleep she does sleep well it's just getting her to go to sleep which he says can be a problem in a normal child as well (which i know it can). also the suction, he didn't think suction was a good idea even though i think it would be and i could use it in the daytime (especially on days like today as she's managed to be sick all over herself three times already). he did say that suction scares her (which it does in the hospital) but i think she'd get used to it. i've bought the pampers matress protectors now which saves me washing the bedcovers as often (they say to put them underneath the base sheet but i put it on top like in the hospital). this has helped a lot. also got the domperidone to be put up to a higher dosage which helps. just read through my message and dp does sound like a bit of a bosy boots which he can be but i do think what he says is also right. thanks for the message. how's your ds doing at the moment?

I glad you posted thid message I looked everywhere for it a while back. Where is chestnut lodge the name really rings a bell

chesnut lodge is in widnes.

Hi, glad you seen the message. DS is being admitted to alderhey on the 20th for an endoscopy, exploration of the bowel and intestines and to have his gastrostomy changed to a mickey button. we are having a prob with constant, chronic diahoreah at the moment. thats why hes going in. he has lost alot of weight and getting really concerned. seizures are not too bad, still lots daily, but the same kind as he was having. its a shame about the sleep meds, they really help to establish a routine. The suction is more for safety than anything else, if she aspirates and gets chest infections its needed, if she can clear her own airways thenmaybe not. Speak soon. xx

well she does keep getting chest infections. she used to aspirate on thin liquids but they said this nolonger happens (had the video xray done). she has a cold at the moment which usually brings on a chest infection and that means another trip for us to alder hey. she is coping well this time so hopefully it won't come to that. i've just bought a humidifier and have been keeping that on. another mum suggested i learn to do chest physio for this so i'll ask when we go to woodview whether they can teach me and if not i'll ask one of the cardiac liason nurses. the hospital have told us that everytime she gets ill get antibiotics into her straight away but our doctors don't listen to us and it results in her needing to be admitted by the time they give the antibiotics out. also with her having digeorge syndrome she should be on perminent antibiotics until we know how her immune system is functioning but again our local doctors don't want to do this.

i hope your ds copes well with the operation. my dd is on lactulose and glycerine supposeteries to keep things moving but this usually results in it comping out very sloppy (sorry tmi). there doesn't seem to be a good level of her just poohing normally if we go down slightly on the lactulose she gets constipated so it's best to just keep things as they are. she only goes once or twice a day so it's not like she'll dehydrate from it. i've found teething can really throw things off balance though as it does tend to turn into water coming out of her bowels and then i cut down on lactulose and it goes back to constipation again. oh the joys of parenthood!

also please let me know how the mickey button goes, thinking of getting dd's changed but still not sure about it as i'm worried about changing it over myself. also i heard; but it might not be true, that the mickey button is more likely to get infected.

Hiya, yeah i heard the same about the mickey button, but his is v v sore at the moment and keeps getting knocked when we pick him up etc. he also graps it if he feels it near his fingers...so watch this space. our gp has been great re anitbiotics. ds is on a daily one called cefaclor and has amoxicillan if he has a chest infection. we dont have to see gp now, i can just ring up for it. we also have a standby one in the cupboard that we can make up when he first starts being ill. it has deffo cut down our trips to a&e.
not sure what ward we will be on yet but hoping its not d3, its so noisy all the time.