To feel fed up about this??

[woosey35]

My youngest dd, aged 9, has seriously health issues. She has 3 separate life threatening conditions which means each day is both stressful and unpredictable. Dh works long long hours. I have a son at uni and another dd who’s 11.
My dd2 has 12 different meds a day plus emergency meds should her symptoms kick off. (She was at a stage of needing an ambulance to hospital 3 x a week until recently).
Anyway..my main aim as a mum is to keep all of our lives as normal and stress free as possible. If that means internalising it all, then I will. I want dd2 to have as normal life as possible and to never feel She’s a burden or exhausting. She’s just wonderful.
Anyway..my problem is I have a few ‘friends’ who know the score yet continue to not get why I can’t make gym classes during the day while dd2 is at school, they dont seem to comprehend, despite me trying to explain, the fact I’m on call 24/7. They tel me I’m letting them down. Some more stress I don’t need. In addition, they think it’s fine to dump all their crap on me, moaning if they’ve got a cold etc. If only life was that simple for me!! Then on the flip side, they don’t even quibble about popping round with a bug on board..and cuddle my immune suppressed daughter!!
I just can’t understand why supposed friends can’t look at things from my view..not add guilt onto my shoulders, or leave my daughter at risk!!
Is it just ignorance?? Or do some folk think they can just push boundaries??

The paramedics can. She’s on red alert to mean she gets category one call out. However we waited 45 mins over Christmas for an ambulance. Therefore I need to be ther for her. As any mum would want to be

So you have to remain within 4 minutes of your DD’s school at all times during the school day? That sounds really restrictive to you as a person, although I know you need to be there for your daughter. Surely for the sake of you, there needs to be another solution for this.

What is the injection?

What happens if one of your other kids has an accident and you need to take them to hospital?

This is not sustainable! Does she have an EHCP? Perhaps she needs to go to a school with a resident nurse who can administer injections? Many private schools have RGNs....

I'm surprised the school have agreed to have your DD there if she regularly needs an injection only you can give within 4mins OP. Is that written in your DDs health plan?

Sounds like you’re going through such a tough time, people are being very judgey about you feeling like you need to wait by the phone, but you’re the mother in this situation and no one else on here knows how hard your particular situation is. I just hope you have adequate support around you from your family or partner so that you aren’t alone in this. I do agree with some other posters, someone at your daughter’s school needs to be trained to give these injections in case of emergency. As for your friends, anyone telling you that you are letting them down purely because your responsibilities to your unwell child comes first, isn’t worth having around by the sounds of it.

What on earth are you going to do when she goes to secondary school? Her school could be 30 minutes away. Unless you're a healthcare professional it's hard to understand why other adults cannot learn to do the injection, just like you did.

@woosey35 - your life sounds incredibly stressful, and these friends could be a lot more thoughtful and considerate, IMO.

So you need to be close to the school - a good friend doesn’t bitch because you can’t go to the gym, they suggest coffee at a cafe near the school, or bringing lunch round to your house. And good friends definitely remember that an immunologist-suppressed child cannot be exposed to germs.

So....she has adrenal insufficiency. She can go into shock for many reasons, even a vomit. She will need hydrocortisone drawn up and administered quickly. It can kill. Legalities mean school staff aren’t legally allowed to administer such drugs. She also has repetitive anaphylaxis. Shows signs daily. This is easier as anyone can give an epipen. She also has brittle asthma. Again..easier as school have nebulisers for her.
Yes I have to be close to school. No, school aren’t allowed to administer it. No she doesn’t have an EHCP..it has been turned down 4 times due to the fact she’s academically on the ball. We are currently appealing.
Janel85 - thank you for your understanding

Can I ask what the legal problems are for the school? Is it just that they aren't trained to draw up the hydrocortisone as presumably the administration itself isn't a legal problem at all?

The school nurse had a meeting with the school staff and said that it’s legal protocol that they aren’t allowed to give the injection. I too am shocked and gutted but been told that it’s protocol and no room for change.

They’ve asked to be trained but are not allowed. The TA is an ex nurse and very very willing and able. She feels her hands are tied

If you or Paramedics are the ONLY people who can administer this injection then she shouldn't be at school

I think homeschooling is the answer to this. And a Carer who can be trained to administer this so that when you're not teaching, you can go to the Gym or to see friends and be safe in the knowledge that she's ok. Or for her to have a Carer accompany her to school. I refuse to accept that you are expected to be within 4 minutes of school at all times!!! Even if you lived next door that wouldn't add up! Madness!!!

Even if you lived in the Caretakers cottage on the school grounds you could easily struggle to get to her within 4 minutes??? Especially if she's at other side of school to the entrance?

I wrote this about my friends and trying to gain support or whether I was being unreasonable. Not the logistics of how I get to my dd. It is seriously this way. We have 5 weekly meetings with all the consultants involved plus educational staff. I can’t change these logistics sadly. I posted to ask how I cope

But as PP have said, your friends are right, albeit abrupt. They are trying to say what I've said, in a roundabout way - that you can't live like this anymore. It's crazy.

I'll be honest, I'm struggling with it. No disrespect.

The school nurse had a meeting with the school staff and said that it’s legal protocol that they aren’t allowed to give the injection.

I’d be pushing to discover what the “protocol” was. It sounds woolly as a reason - who has advised this?

I posted to ask how I cope

I think people are trying to help you cope - even if it might not feel like it.

Being in a situation where you can't ever be more than 4 minutes form your DD's school is pretty much un-copeable. I think your friend's probably mean well - it's just a very difficult situation to know how to handle.

I really do think you need to do everything you can to challenge the decision not to to allow the TA to administer the injection - not just for your wellbeing but also for your DD's. What if your car was blocked in? What if your phone got stolen or broken? The idea that they would just leave her to possibly die when they have both the medication and someone who is medically trained to administer it is just crazy.

If you could get this situation changed then I think life might be a lot easier to cope with.

Have you spoken to your MP about it? Thought about going to the press? (and that's one I've never suggested before but I suspect it would make the kind of press story that might make a difference)

Sorry to jump in op- I feel this is very relevant given your dds condition. I’ve dealt with a child with the adrenal issue you describe. I’m pretty sure of it anyway, the hydrocortisone injection rings a bell.
Mum like you was anxious and run ragged the poor love, I had her crying on my shoulder a few times.
We pushed for training and had nurses come in and train named members of staff who dealt directly with her dd to do the injections. I was one such person who received training. It took over a year to be done and we had to practice on oranges. Training was to be repeated every 6months.
This was in a nursery- Mum spent the dds entire session to that point in the building in case of emergency as she had to remain close.

Are they not just trying to still be your friends?

“Such as sitting in hospital at my daughters bedside while she’s wired up with tubes everywhere and this certain friend sends me a photo of her new hairstyle........“

I have a friend with a very serious health condition, (has been almost fatal more than once) I messaged her the other day while she was waiting for an operation about my dog... not because I’m so self involved that I don’t care, but because she’s my friend and I figure she wants to be treated like a person, not a health condition. I’d have sent her it if she was at home and well, so I carry on when she’s not.

Posted too soon sorry.
I know you’re posting for help with your friends, I just wanted to give you hope- training can be done. In the case I mention, Mum was able to eventually start working from home and going to see people again- to that point, nobody but staff dealing directly with the family could possibly understand what she went through.
I suppose this is how it is with your friends. They want to provide you with an out if you can take it- and to let you know they’re always there. The delivery is poor, but keep reaching out to them.
I would insist however, that you met in public from now on. So parks, if possible. My ds was immune compromised, parks were about the only place I could meet with people to avoid him getting their germs. Plus I could leave quickly if it became apparent someone was infectious

Hmm, yeah, that does sound weird. Hydrocortisone's on the same list of injectable medicines people can legally administer in an emergency as the Epipen is (human medicines regs 2012 sch 19). That said, I understand that it's practically more complicated than just stabbing an Epipen, so I could understand people not feeling confident to do it.

Just my two cents: at my local gym signal is lost. There is no way to receive or make a phone call or texts. Or the internet. The gym in question might be like mine?

As to how you can cope, maybe just re explain to your friends your situation? In... clearer terms?
As for the cuddles when they ill I would also advise you to be dead clear that it is a no no. Are you afraid of how they'd react?

[Flowers] op

Op it is clear that a lot of people posting here are similar to your friends.... Ignorant and unwilling to understand.
My dh has a life threatening illness with a life expectancy of 50 (he's 34). Some days he is absolutely fine, but I always have to be on standby incase he collapses (which often happens).
Its hard but your friends have to realise that you're time comes with conditions and they have to be OK with it. This is your life, and just like every other mother, you are doing the best for your child and there is zero compromise xx please don't let anyone make you feel bad or unreasonable for choosing to be the best mum you can be.

Ellendegeneres- wow thank you so much. Someone who has true understanding of such issues. Can I ask you how long ago you received training with oranges? I know it was the case in our LA a few years ago but sadly recently things have clamped down and therefore not allowed. I so wish it was but it’s not. It’s fab to hear for the mum you dealt with, things improved. I wish her well
Masonmummy - sorry to hear you’re going through similar stress and fear. It must me traumatic to be on standby for your husband. I empathise greatly the being on call constantly. I’m here if you fancy a chat or offload. I agree....it’s hard for those who haven’t walked in these shoes to fully understand the heartache. How easy it is to judge hey!!