Hi,
I'll try to keep this as short as I can but the short of it is I am absolutely exhausted by constant worry and almost constant health related issues that my son seems to have. Looking back it all started when he was 13 months old and choked on a cucumber stick (cut appropriately for his age / stage). I'd given him the cucumber with his lunch, he took one bite and went purple and couldn't breathe at all. I ripped him out of his highchair and phoned 999 as I tipped him upside down and then hit him on the back several tones before it released and he could breathe. The call handler said "well done you've just saved your baby's life". After that I was a nervous wreck about him eating - I still am.
Then a year late when he was 2 he had a hypoglycaemia episode overnight. He'd complained his tummy hurt the day before and had a very slight raised temperature. He'd not eaten much that day but went to bed ok and I decided to sleep next to him just to keep an eye on him. Well if I hadn't he would've likely died or been in coma by the morning because at 5am he tried to wake and couldn't. He was cold, drenched in sweat, couldn't stand, couldn't speak, eyes rolling in head.. At a&e they rushed him to Resus thinking he had sepsis. As soon as they took his blood sugar all hell broke loose - it was 1.6. They gave him glucose and he perked up. The paediatricians said he must have ketotic hypoglycaemia.. a condition where the blood sugar in the body can drop after a period of not eating, illness, sickness and diarrhoea. The advice was to feed him often. So for the last year Ive slept in his room (scared it would happen again) and have stressed myself daily over how much food he was eating.
He then had an operation for a hernia in July. Which was horrendous as he reacted badly to the anaesthetic.
Then last month, he started off with a normal cold. Two days later he was struggling to breathe in his sleep (sucking in under ribs, rapid breathing etc). His oxygen sats were 87% (we have a pulse oximetry from covid). I went to a&e with him FOUR TIMES across a 4 days because he was so poorly and they kept sending him home.. with an inhaler then steroids etc. it wasn't until he was sick 16 times from the coughing that he was admitted onto the ward. They said he had pneumonia.it was horrible as he also had another hypo on the ward and the nurse didn't even notice - I had to tell her to check his blood sugar. He was very sick. He got well, and 2 days after being sent home he got RSV. He was readmitted.. Very low oxygen for 4 days and so I slept in the hospital with him for a total of 7 days across 2 weeks. They mentioned he might also have asthma as he was so wheezy during these illnesses and he gets hayfever every spring with a cough.. so they said here's some inhalers to use with a viral wheeze plan, and to avoid him getting ill
for 6 weeks (keep him off nursery etc).
I've been a mess ever since. He's been home for 3 weeks and he was well for 2 weeks but his big sister (13) caught a bad cough and cold and even though I tried to keep them apart and she wore a mask in the kitchen etc, he's caught it. He's had it for over a week now. He keeps losing his voice, and coughs now and then. The cough is like he needs to clear his throat but at times it sounds wheezy to me. I've been using his blue inhaler loads more because I'm scared it's from his lungs. The GP said it wasn't. Then we saw an out of hours Nurse practitioner who said he could hear some crackles so gave antibiotics. It's been a week and he's not got worse, but he's still having these times where I have to tell him to cough to move the sounds I can hear...last night I was awake most of the night watching him as he was breathing as if he was constantly having a bad dream(?) and couldn't settle. His resps were ok and his oxygen saturations, but I kept thinking the worst case scenario.
I now wake up every day with a feeling of absolute dread. I am sick most mornings from the anxiety of what might happen to one of the kids next. It's my DS who seems to be constantly having issues and it's draining because I feel I can never relax and enjoy him. I worry he'll get really really ill and I'll miss it, or people won't listen to me and he'll die because of it. My husband is completely non supportive. Infact ever since the first hypo attack (where he said don't go to a&e he's just tired and screamed at me the whole way there when we drove there)... I've not trusted his judgment. He seems to gaslight me deliberately every time he's been poorly. When his oxygen was 87% (with the pneumonia) he said the monitor was wrong and stuck it on my thumb to 'prove' it. When mine came back normal he bent my thumb back before ripping the monitor off. Before he was admitted onto the ward last month he screamed at me in the side room (whilst DS was half conscious) calling me a "fat c*t" and saying it was all my fault because I'd "let them give him steroids" he was blaming me and the steroids rather than the pneumonia? When DS is now poorly, I'm doubly scared as I know I'll get yelled at and be up against him before I even get to the Doctors!
Im so very low. I have no support as my family live 8 hours away, and I am too embarrassed to tell friends.. although I barely see anyone nowadays. I barely go out as I'm scared he'll get ill whilst out - every cough sends adrenaline through me. I get conflicted advice from the GP and the asthma nurse about this cough he has from this virus and I just feel like I've lost control as a mum. I am just muddling through and scared he'll get really ill and it'll be all my fault.
Im so scared I'm going to have a full on breakdown and then I'll be no use to anyone and will hate myself.