As most people know, Emma is in hospital. She keeps having setbacks - I am spacing myself from her because it is taking a lot out of me both physically and emotionally. If anything changes, her doctor is ringing us up and letting us know what's happened and what condition Emma is in. She had a bad night last night and my hubby's phone was constantly going off. Even though I'm not with her yet, I can't help laying in bed thinking I should do XYZ differently, then ABC would have gone differently. Its making me feel like I'm failing at parenting and I feel crap about it. Does anyone have any tips or advice on how to deal with this sort of thing?
Dear EmmasMum, This has come up on the forum before. I think we love our children SO much and we want to protect them from the world, that when we cant and things go wrong (as they do) we blame ourselves. My teenage son has gone through some really bad times with his asthma and other issues, and I have felt desperately unhappy and guilty.
My 83 mum tells me she feels guilty about things she did in our childhood and the four of us are in our 50s! (And we all love her to bits). So I think the guilt thing it is just part of being a mum! At the end of the day we all do our best and with ill health (like asthma) we are dealing with something completely beyond our control. We mums are also human - my health is not too good and as a family we are dealing with some issues at the moment (apart from health!) - so please dont be so hard on yourself.
Its quite normal to feel this way. As a parent you want to be able to stop anything happening to your child but you simply can't. Its so hard to have to leave them in the care of the medical profession and then it makes you feel helpless. You are right you do need time out for yourself and your family. I give this advise to all my parents when I'm caring for their sick baby. Your not a bad parent, its obvious how much you care and love Emma. Catherine
Being logical about it, I KNOW I can't control what happens with her, I KNOW I can't make her body do anything.
It seems whenever I go home to do something, its then when she starts deteriorating, which makes me feel even worse knowing she's fine till I go home then it all goes wrong.
Angievere is SO right. I don't think that there's ever been mum who doesn't worry that she's not getting it right. BUT the only thing that really matters is that your child knows how much you love her and I can pretty much guarantee that Emma knows that she is loved and how hard you find it to see her in this condition and know that you have to rely on other people to help her to get better. I know what it's like to feel helpless in the face of illness, and maybe you would find it helpful to ask Emma if there's anything that she'd like you to do for her that you haven't thought of. If there is something you will feel better for having something to focus on and if there isn't you'll know you're doing everything that Emma needs you to do.
I think that as parents we can only do what we know we should do, at the time we have to do it. We make decisions based upon the info we have available, that we believe will get the best results for our kids. If your looking back then I think you need to do it in the context of what you knew and felt at the time and not what you know now. I hope that makes sense.
Of course, I'm no expert but sometimes I feel the same. I think all mums do. Maybe the fact that your asking the question shows that you are a good mum, I think so.
I hope Emma is improving
gill
of course ur not failing at being a good parent, please dont think like that, your anything but!
i know emma having a lot of setbacks, but u not to blame for them
thats all u can do is what u r doing - show her ur love and support and be there for her when she needs u - and stop her from self-discharging! as well as keep wires on and IV lines in lol
she is improving so thats good news keep focusing on positives and ake sure u getting plenty of rest as i keep saying!!
keep strong
now she is in hdu the only way is up, ward tomorrow one step closer to home!!
x x x
As mum of two, can I just say this worry and beating oneself up, comes with the territory.
Going back and forth to the hospital every day to visit someone you love and would give your right arm for, or to sit with them while they are being monitored, fairly takes it out of you. Had this with both my girls. Younger one had severe dairy and wheat allergy and had many hospital admissions and appts for first few years and I so blamed myself for everything under the sun including painkillers taken for toothache just before being pregnant with her.
Later, both my girls had problems with first pregnancies resulting in many admissions and babies born by emergency section, and of course I blamed myself for that too. Wondering if I'd passed on a faulty gene. That my older daughter went on to sail through her second pregnancy rather knocks that particular nail on the head.
So promise me, Emma's Mum. Try if you possibly can not to blame yourself when Emma's asthma goes haywire. It truly is NOT your fault in any way, shape or form. Promise me too, to take the time to sit down with a cuppa and do something, even if only for ten minutes, that you like. Be it read a book or knit or go for a long shower. Refreshes the spirit.
Best wishes to you all.
Moira
Emma has just spent the last half hour trying to convince me she's coming home. Got a text saying 'I'm bored, tired feel like sh*t, wrist hurts just pulled cannula made a mess of arm, lovely & bloody. Want the stupid f*ckin thing out,, I want out they're a set of c*nts I'm coming home,, Ill walk if I need to"", with a lot more letters instead of stars. Would have thought night she had last night with her breathing rate would have made her behave herself and not carry on.
She's been ill enough to need to be hospitalised before with her asthma and chest, but this is a completely new level to it.
Aww must be hard for you having Emma in hospital and more so that she wants come home
and being a pain( in a nice way,my son is just like it stroppy )
Hope the time in hospital goes quick for her as not nice and get board.
Hope she feels alot better soon.
Your a lovely mum and want her home and well.
take care also its worrying for parents and even more when their asthma needs alot more
Oh my goodness i too feel like a bad parent alot of the time with my youngest having brittle Asthma!
I feel like there must be some reason that its my fault shes so poorly and there mustve been SOMETHING i couldve doen to protect her better.
All I can say is that from your posts you seem a great parent.
Dont be hard on yourself. When your child is in hospital and very poorly, you feel a sense of loss of control. As a parent, thats alien as you should feel in control fo your childrens well being.
Let yourself have a rest, both emotionally and physically. Look after yourself too.
its so tough being a parent anyway, but when your child has severe Asthma it can be excrutiatingly scary and lonely.
You know where we all are.
Hope emma is picking up and on her way home very soon.x
Emily.x
She has had a massive setback earlier on. Just got in from hospital and feeling completely drained, will explain tomorrow what's happened as wanting to try sleep at the moment.
Hope everyone's doing OK.
xxx
Rest up and make sure you eat and drink also.have a good sleep xxx
make sure you look after YOU so you can look after Emma.
Food, Drink and Sleep are important
Geina x
*UPSETTING CONTENT* update on Emma.
Yesterday afternoon, Emma had the biggest attack, ever. She stopped breathing for close to 5 minutes, and her heart stopped twice. She is back on the ventilator, her heart rate and blood pressure were really low. She had a lot of IV lines going, and is on saline to try increase her blood pressure. No-one is sure what triggered the attack, the nurse in HDU said that a cleaner had been round 25-30 minutes before, which had triggered an attack before.
Emma had a bad night saturday night, she didn't have much airflow to her lungs, she had IV lines up, a few nebulisers, this seemed to resolve it. Emma's doctor thinks a mix of stress, the cleaning products, and the fact her airways were already twitchy.
Considering how many bad attacks she's had over last few days, and the fact she has pneumonia, I don't think she's doing too bad personally. The infection which she had in her blood has cleared up - her white blood count and infection count is getting higher.
We got told last night that Emma should be on the ventilator for around 72 hours, then another 48 hours after that on observation in ICU, then around 4 days in HDU. Her stay in resp ward depends on how her breathing is once she's out of ICU/HDU.
She's got a nurse checking her obs every 15 minutes and a doctor around every half an hour for me and hubby to ask any questions.
Had phone call last night saying we needed to get to the hospital ASAP, Emma's oxygen levels had dropped, her heart rate had become irregular and slow, her nurse increased her oxygen levels and this seemed to help, her heart rate was still slow but had become more regular than it was. I left her early last night as I was completely drained, she seemed stable then.
Hubby says staying at the hospital most of the time won't do me any good and says I can't go see her till 1pm, not a lot to update on until that point.
Oh honey, thank you for taking the time to post update. Sometimes helps to get it down on paper so to speak. Plus it let's in the comfort of friendship. Adding you to the light I carry in my heart for Alex and Snowy.
Moira x
Sending all my love to Emma and hope she picks up alittle soon xxx
Thinking of you, I hope Emma starts to improve very soon.
Clare X
Not much has changed, Emma's heart rate dropped again, she keeps missing beats then double beating. I'm not allowed to see her due to me picking a virus up. Having to rely on hubby and hospital staff keeping me updating is tearing me apart.
How hard all this must be for you. Sending you hugs and positive thoughts to help you and Emma get through this. Love to you all.
Thinking of you - must be so hard especially not being able to see Emma - crossed fingers she gets over this soon and is able to move to HDU and eventually home. I hope you're looking after yourself especially if you have a virus. xxx
Lots of love to you,it must be hard not going to see Emma but hope you feel better soon
and then can see her.
lots of love to you all and in my thaughts and prayers xxxx
I've had an update on her. Her doctor is planning on taking her off the ventilator after 48 hours instead of the first planned 72. 48 hours will bring her to tomorrow afternoon - if everything goes to plan, she will be in ICU for 72 hours after coming off the ventilator, first plan was 72 hours on ventilator, then 48 hours on observations. Her doctor doesn't want her moving to HDU till 5 day point. Her heart seems to have regulated itself now, around 52bpm, the highest it gets at home is 66bpm.
I've eaten, been sleeping, showered, taken a big step backwards. Feeling slightly better than I was.
Glad your looking after your self and getting better
as she will need her mum alot soon I bet fussing over her like we mums do xxxxx
Wanting to be better by the time she's getting moved onto HDU, or at least alert enough to realise what's going on.
Glad you are feeling a bit better. Wish I had Mr Tickle arms and could reach down country to give you a hug.
Moira x
Had more news on Emma's condition. Both good, and bad. Not sure how to take it in. :S
I hope the good news outweighs the bad. Has Emma's plan had to be altered? I do hope you get some news soon which is entirely good, and also that you're able to actually see Emma. xxx
Plan so far is:-
Almost certainly going to try get her off ventilator again tomorrow afternoon, keep her IV lines going at a slow rate, hourly nebulisers, and depending on her oxygen levels, hopefully nasal oxygen instead of needing facemask.
*think* positives of the updates overrun the negatives of it, but not entirely sure at the minute.
Hope things improve and the positives rapidly outweigh the negatives. Thinking of you all and praying that Emma improves quickly.
Take care
Fee
I pray Emma has a better night tonight and recovers soon.
I hope she has a good night, hopefully things will be good from tomorrow. I also hope you manage to get some rest as well, although I suspect it will be difficult.
My thoughts are with Emma, Snowy, Alex and you... not forgetting Lewis of course
Hi i hope Emma had a good night and things go well this afternoon when she comes off the ventilator.
Lots of love to you all and fingers crossed for Emma today anh hope
positive news and progress.
Couldnt post last night as phone for some reason is playing up and wont let me post on it
I hope Emma had a good night and that the the positives keep coming. It's good to hear you're looking after yourself too, and I hope you feel better soon. Positive thoughts and hugs are on their way to you all.
Last night, was the first night in a while when we haven't had any (bad) news on Emma, still set for trying to take her off the ventilator later on, I'm scared she's going to have a big setback when she comes off of it though. The first time she got taken off it, she was off it 3 and a half hours at the longest. Hopefully it'll be straight forward coming off it today and I'm stressed about nothing.
Do the hospital have critical care outreach team...they are great to talk too about all your concerns and ways forward. They aren't always doctors but at my local are very senior nurses who have so much critical care experience. They have helped me and my family out on my many ITU visits. Might be worth checking out. Hope all goes well.
I hope all goes well today for Emma and she stays off the ventilator. Take care and I will be thinking of Emma ans Snowy today. x
I'm not sure if they have a critical care team( (or whatever it was mentioned), I usually speak to the doctor who is caring for Emma, a little bit difficult when I'm not allowed to see her.
Emma has been breathing for herself for the last 35 minutes - she seems to be coping OK with it, not a lot more to update on until hubby gets back from seeing her.
I hope stays off the ventilator, and gets well soon. I think its only natural to feel youve failed as a parent when a child is ill as you feel you should be doing/done something and it wouldnt have happened. You feel you would do anything to help protect them from whats happening to them. Its very hard and emotionally draining to deal with and this is where its good to eat, rest and generally look after yourself well. It seems selfish but it helps you to cope and gives you time to recharge your batteries. I wish you all the very best and hope to 'see' emma posting on the forum soon.
I hope things are still going ok for Emma and that she's managing to breathe on her own. Thinking of you all and sending positive thoughts.
Take care of yourself, too.
xx
Haven't give an update on Emma in a while as things have been up and down. She WAS doing OK, oxygen levels were a little bit low but otherwise stable. She had 2 smaller attacks yesterday which were easily treatable. She had a severe attack this afternoon, her doctors have been working on stabilising her for the last 90 minutes or so but doesn't seem to be having much effect. I'm outside at the minute as I'm not allowed in while they're trying to sort her out. I will post another update on her when I know what's happening with her.
My heart goes out to you I know the feeling as a parent when you think there is an improvement and then there is another setback.
Thinking of you and Emma and I really hope she is stabilised and on the mend again soon
Hi Emma's Mum. I'm hoping that things are going well with Emma and that you are still looking after yourself. Hugs and positive thoughts coming your way.
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lol
keep focusing on positives and ake sure u getting plenty of rest as i keep saying!!
Being diagnosed at moment with asthma 
I am feeling a lot better 
Am I being selfish? 
Snowy update - Tuesday :-) - (re-updated with some good news at 7pm)
