Help, permanently sick daughter

[NicJZ]

I'm lost what to do, struggling physically and mentally so need help!

My DD was born early 15 months ago and by 3 months old she'd been in hospital 5 times thanks to bronchiolitis at 2 months and COVID at 3 months. She even caught chickenpox at 7months (her older brother is 3yrs older so bringing everything home from then nursery and now school!). Since 2months old she has had what appears to be a permanent cold/cough mucus and phlegm. Doctors are driving me crazy, tell me she has another virus all the time and given me asthma medication to help her to breathe but she fights not to take it currently doing in her sleep so she at least has some. I'm told she's going to be like this until she is 3yrs old!

I've tried humidifiers, Calpol plug ins, nasal sprays, cough medicine, nasal bulbs and to be honest she's fed up with it, DD fights so much not to take any medication it becomes counterproductive giving as she cries - making more mucus - if you try. I need to go back to work as bills have all gone up (was made redundant the day I returned from maternity leave when she was 11months old and not been able to find another part time role yet). I get around 2-3hrs sleep a night due to her waking up every 2 hrs struggling to breathe and coughing and know I will get fired if I get a job when dealing with this.

Before you ask, my partner is NOT helpful and never does nights, didn't with first child either. Not going to get help there so need to find something to help my DD. He pressures me to return to work (claims he can't afford bills due to increases but he can). I just know I will break if I start a new job while dealing with DD being ill all the time.

My question to everyone is has anyone experienced this before?? Sick child following bronchiolitis and COVID? Is there ever going to be sleep again, I just can't work on no sleep, I will make mistakes but can't sleep if DD never gets better. Has anyone got any tips other than elevating her? Her favourite position is sleep on mummy but that's not going to help me sleep sadly.

I'm lost, any advice people can give would be amazing, just want DD to be well or at least sleep longer than 2hrs at a time.

Sorry if this sounds crazy to you but if you've exhausted the NHS then I would try and take her to herbalist or traditional Chinese medicine practitioner - someone reputable with a long career. You literally haven't got anything to lose, it won't harm her but it might help.

I would second alternative practitioner as well. A reputable nutritionist or functional doctor. Start with taking her off wheat, dairy and eggs while you’re looking/researching. See if you can get recommendations from friends. You must be at your wits end, I know I was when my daughter vomited and choked non stop for the first three years, I felt like a zombie.

I don’t have any advice of what helps but my DD was like this after being 11 weeks premature. Her last hospital admission was at 19 months though so it may not last 3 years! Now that she’s 6 she hardly ever gets ill. Alternative practitioner may help but personally I wouldn’t start taking things out of her diet unless there’s a clear need.

Oh no you poor thing. I also have a DC who was born early and suffered horribly with respiratory illnesses for the first few years of his life (he's just turned 5 and this is the first winter we've had no hospital admissions 👍🏻)

No, it won't last forever and in the more immediate future, spring and the warmer weather is not too far away? This should mean fewer bugs coming home from school.

What I used to do was have him in the bed with me, but in a Sleepyhead to avoid him rolling around or under the covers. I'd prop the top of the Sleepyhead on a thin pillow so his head was elevated. Lots of Olbas oil and a humidifier. Also, and they are quite pricey, we invested in an Owlet oxygen monitoring device. This was a massive part of allowing me to check that his sats were ok and relax/sleep. Also ibuprofen or paracetamol when the coughing was obviously causing throat pain.

(However I can totally relate to the refusal of treatment. DC still hates anything medical now. I remember being in the hospital and 3 nurses having to hold him down to keep the oxygen mask on. I just pray he grows out of it when he becomes more rational).

You will get through this and it won't last forever. Please tell your partner and your family how desperate you're feeling

I have no advice regarding your DD but just to say your husband sounds like an unhelpful idiot. It's so unfair he is trying to pressure you to work in your situation when financially he can support the family, and offering zero help with DD at night- that needs to change and if it doesn't you maybe should consider the future of your relationship.

The first thing I thought reading your message was that your employer was very, very brave or very, very stupid making you redundant the day you returned from Mat leave. Seriously you should look into that.

The second thing was your DP is clearly an arse, but just as clearly you know that.

You do need to get some help from somewhere. Can your parents or siblings help? If she needs to be kept calm then keep her calm - giving the inhaler while she’s asleep sounds sensible. And yes maybe look into the alternative practitioners. I think though you maybe need to figure out dealing with the situation as it is as she sounds vulnerable to these respiratory things and you’ll probably have a few years of it. I hope you manage to sort something out as it sounds very hard and I’m sorry xx

Your right my employer was an idiot, I managed to change it to a
Settlement as it's blatant discrimination and wasn't a genuine redundancy but sadly as I am so tired didn't have the energy to force more out of them!
And yes, my partner of now 17yrs is a bit of a male chauvinistic pig to be honest but he only turned weird 5yrs ago when his mother found out about me but that's a whole other story. Thankfully my 2 babies are my focus, happiness and strength. I just need sleep, need it badly as can tell my brain is turning to mush!

I often feel myself not able to sleep as listening out for my DD. I sleep in the same room as her right next to her and every single night come her waking at 2:30am she ends up in my bed which co sleepers will get you can't cover yourself up with covers as too dangerous so I just end up freezing and cuddling my DD muslin or blanket for warmth!

I've got another doctors appointment next week and hoping we can get a referral as need a specialist I'm sure, I've seen 4 different doctors at our surgery with all the times I've gone and all just blame viruses every time, I wonder if NHS has been told to stop helping children as much as under 16 are free for prescriptions....my DS had a couple of chest problems when he was 1 and every time he was on antibiotics, don't see why my DD is being treated differently other than money!

I'm thinking set out a budget for the house and cut costs where we can so I can just stay off work until my DD starts to get better.