Living with a chronically unwell child

Hearing test reports arrived today. We already knew what they were going to say, but seeing it in black and white is still pretty depressing. Plus Mercedes ear is pouring gunk and she spent all afternoon asleep on the couch miserable

Maya, I can 'sort-of' relate, I've got one little boy who is chronically ill.....I don't know how you cope with 3 of them!

My son was born far too early and his main problems are that he's got a complex heart defect and chonic lung disease (he is on home oxygen).

I call him my bubble boy. Whenever we go out, he MUST be in his pram with a storm cover covering him. We cannot have anyone near us who is ill, even a runny nose could lead to a chest infection or pneumonia for him.   

On our way up to Starship, we were out in the general public for the first time without a storm cover (for obvious reasons we couldn't take the pram on the plane). Right on cue, Jacob caught a bug and ended up with pneumococcal pneumonia, spending 5 days in PICU. I have certainly learnt from this, and the next time we HAVE to be out in the general public, my son will be wearing a mask!

'Normal' life for us is listening out for beeps from his monitor that is consistantly recording his saturation levels and heart rate. My son is a great sleeper, but unfortunately, his monitor is not!

It is certainly a lot more difficult looking after a child who isn't healthy.

I have meet some amazing people through the Ronald McDonald House who have been through much much worse than what my family is going through and who still manage to cope. They are really an inspiration and I try to think of them when I'm having a bad day.

The other way I cope is by being thankful for having both sons at home together. My youngest son has spent 5 1/2 months out of 8 1/2 months in hospital.

I didn't want to take over your post, but wanted to share my story to try and help you

Sorry to hear about the hearing test report.

Edited by NikkiB

nikki,
i really feel for u and hope that he is getting stronger every day. I have a sone 16mths with 'jackitis' thus named because no one knows wot is wrong, we do know he has neutropenia ( lack of neutrophils or kind of white cells) so he also cant fight bugs and he has ng tube because he has stopped eating since june this year and lost weight, he doesnt seem to be absorbing foods again unsure yet why... we are in the dark with most of the things with jack and it is very frustrating but the bubble line that u wrote struck a cord with me, as this is my life most of the time also. Lots of hugs and i hope that u are getting the support that u deserve
caro h

we have not long been in hamilton so not really have the homecare workers that come but havent had a chance to really meet anyone yet but that ok i have my friends in dannevirke that call often and that is good. does your little one get infections from his tube , have been in hosp last week with one side infected and now the tube on the otha side and it is getting infected also? we use duradurm tape but he still getting them. wot do you use?

Just wanted to say big hugs to everyone out there with sick kiddies. I know how it feels, although in our case it is constant viruses that are the problem. Gabrielle was born 6 weeks early and seems to be susceptable to every bug that comes along. She's had 7 bouts of bronchiolitis since May - it seems that we get about 4 or 5 "well" days in between each bout. Even though the doc keeps telling me it should only last 3-5 days, the worst seems to take 7-10 days and then she has a terrible cough pretty much constantly. We have had 3 admissions to hospital and an ng tube (only briefly). Each time she gets sick she spends days just screaming and screaming. The last time we were in hospital we were in a 4 bed room and she kept all the other kids up all night which was terrible.

I've taken Gabrielle to a herbalist to try and find something to boost up her immune system and she's on cod liver oil (apparently its an anti-inflamatory) as well. She also has reflux so we've got slippery elm for that to see if it helps.

Its so hard to see my smiley happy baby underneath all the screaming when she's not well. My work are starting to be rotten too - they were good the first couple of times she was sick but now I have run out of sick leave and used next year's sick leave too they are less sympathetic. I am having to work from home doing a full week's work round Gabrielle which mostly means working 5amish in the morning or after I get her to sleep at night round her waking up crying.

Sorry - this wasn't meant to be a pity party for me. Just wanted to say I know how hard it is and that I hope everyone knows what super mummies they are. Its not easy being a mum, but its 10 times harder being the mum of a sick child.

I hadn't thought about an acupuncturist NikkiB but maybe I should try that. I am already taking her to the chiropractor but so far it doesn't seem to have had any impact. Thanks for that.

PMSL - I'm just trying to imagine what the gremlins would think of acupuncture - probably something best started when they are too young to complain about it

Hugs Drumstx, having a permanent NG tube must be tough There are support groups for tube fed babies online, not sure where exactly but one of the girls I work with had a little boy that was NG tube fed for several months and she mentioned it.

How is Jacob doing Nikki?

Shelt - Gabrielle sounds a lot like my girls - virus after virus after virus (altho they tend to get the nasty bacterial infections in between viruses lol!), it gets exhausting after a while! Fortunately, I have a nanny so I can work even when the kids are sick, if they were in childcare they'd have more time off than there I'd say. Having the nanny also means we can minimise their exposure to bugs, altho the gremlins have just started preschool so will be interesting to see how that goes...

Wow exciting! And scary at the same time - but how awesome!

The girls are doing OK, not great - they screamed when I dropped them off, but they'll get the hang of it.