How to deal with stress/paranoia after your LO has been in hospital and had surgery?

[hotpotmama]

My DS3, 17months, was diagnosed with Pneumonia and also Empyema which is fluid on the lung. Had to have surgery and chest drains to drain the fluid.

He is out of hospital now, on antibiotics for 6 weeks and seems to be doing fine but I feel so stressed/ anxious and paranoid about him and the future. He has only been out of hospital a week but I can't stop worrying about everything, a lot of things which are out of my control.

I don't want to take him anywhere inside where there are lots of people and therefore lots of viruses/bugs (am ok outside). I was in a shop and someone said they had a cold and I walked straight out of there. I know I can't keep him in a bubble but I worry about whether he is prone to infections and if we will be back in the hospital again (he was poorly at 4 weeks old and was in hospital for 10 nights with a bad virus that floored him).

I feel very stressed about the swine flu scenario and panic about if there is a pandemic and my DS falls ill again, what would happen if the hospitals had no space for him.

I realise I am worrying about things that may not even happen but I can't help it and am panicking about so much.

I know time will help, but need some advice to cope with the stress I am feeling at the moment. So if anyone has been thru this and can offer me any advice, it will be gratefully received.

ummm probably not much use but maybe plan your outings around what you are happy with so a nice walk in the park well wrapped up is one thing sitting in the corner having a coffee another playgroup/soft play wiht loads of snotty nosed kids dribbling over everything is a no for now!
DOn't worry about things you have no control over really swine 'flu you can stay away from the sick but you can't control whether it's going to happen in a kind of pandemic way so when the thought comes into your head tell it to go away/change activity/call someone/do something else/(try mental maths saying the alphabet backwards !)

we are really such a long way from hospitals not having room for sick children again just send that thought packing just say no it won't happen like that and that's it.

As time passes remind yourself that a few mild germs are good!

time helps!

Thanks 1dilemma. Yes, am within my comfort zone in parks etc but feel very panicky inside (except my house) anywhere.

You are right too about the no room at the hospitals, I know its irrational as I am thinking it but can't help it. My head is full of doom and gloom at the moment and want to rewind to a few weeks ago before all this happened and it was full of happy thoughts (most of the time anyway!).

Thanks for taking the time to reply, appreciate it.

i'm sorry your ds has been ill and you've all had the upsetting experience of hospital and surgery. speaking only from personal experience, I felt very similar after ds1 and also dd were admitted with pneumonia (dd's diagnosis changed to bronciolitis though and we were out the next day so not too traumatic). all I can say is that with time, as their health improved, I started to relax again and not flinch every time someone coughed

while they are in hospital, you have to be strong and hold the family together. imo it's once they're at home that you feel safe enough to let go, and then it's your turn to have a bit of a collapse, because now it's safe to iykwim? take time out for yourself and be gentle on yourself. can you get a bit of time to go for a massage? or a coffee with friends? something that is just for you, anyway? talking to people in rl and telling them your fears might be helpful as well.

I;m not sure I have any good advice at all really but wanted you to know I'm thinking of you and have been there and come out the other side

Hello. My DS had pneumonia and was in hospital several times last winter when he was about 9/10 months old. Since then, we've been through testing for CF which was thankfully negative.

I would say my reaction was quite like yours. I was extreemly anxious and upset all the time and panicked every time he was a bit under the weather.

I eventually ended up with ADs from my GP and I've had counselling. When I said to the counsellor that I felt I should be able to cope and that my reaction was wrong, she asked me what I thought was an appropriate reaction to my child being very ill. She got me to realise that it is a very worrying thing to go through and that there is no correct response or appropriate level of worry. In a way, it would be wrong not to be very worried because it will make you do your best for your child.

So don't beat yourself up. If you think you are overreacting, speak to your GP and ask what precautions they advise. My DS's consultant, for example, told us not to take him swimming. That said, he's had suspected swine flu and he was ok with the tamilflu.

The other thing that helped me is to make a kind of medical checklist for DS. We think he is asthmatic and he has asthma meds, but the one time he actually had an attack, which was at night when my DH was away, I really panicked and just felt I couldn't trust my instincts. What I have now is a sheet with emergency contact numbers and the point at which I should get medical help clearly written down, so that I can follow it in an emergency. Knowing what to treat as an emergency reassures me.

Finally, with my DS's chest, we are now ultra cautious and take him to the GP as soon as he is coughing. They have been clear that they are happy for us to do so. We have also made sure that he has been given antibiotics very early on in the few chest infections he has had since last winter. It seems to have stopped anything more serious developing.

I really hope some of that helps. I guess in essence my message is to be as well prepared as you can and not to give yourself a hard time for wanting to protect your son.

Best wishes.

Thanks morocco. I know it takes time as I had similar feelings to this the first time he was in hospital.

I am lucky to have lots of good friends I can talk to its just that none of them have been through anything similar with their children so suppose they can only imagine the stress that comes after.

You are right, when its all happening you are running on adrenalin. After its all over and you are back home, you get time to think about it all and worry about everything.

I suppose I am going to have to go through this stage of worrying/ stressing as part of the process of getting back to normal and getting over it. I feel guilty discussing my feelings as I am not the one who had to go through 2 weeks of pain/ surgery etc, it was my poor little boy.

it's a shame you don't know anyone in rl who has been through something similar - guess that's where the internet comes into its own! you're right - I don't know if my friends in rl who haven't experienced something similar would really 'get' why I was worried - but they might surprise you.

certainly no need to feel guilty. I bet you did an amazing acting job those 2 weeks, reassuring your ds, keeping him calm, keeping him happy, pretending everything was normal. In fact, I would be willing to bet you suffered right alongside him. you need to process all those emotions. it is an awesome responsibility - looking after our babies when they are ill.

strawberrycornetto has some really sound advice about plans and checklists! I'm also a big fan of teatreeoil and now convince myself that carrying it round everywhere ready to wipe down surfaces is bound to stop all known bugs in their tracks

Thanks strawberry for replying. My DS was also tested for CF after his first hospital stint but that was negative, thank god.

The thought of going to the doctors freaks me out as all those people in the waiting room with infections/ viruses etc would make me run a mile from them all.

I suppose its early days still as he only came out last sunday.

Your sheet is a good idea. I ordered a digital ear thermometer earlier this week as find it a nightmare with the underarm one. I find myself constantly feeling his head to see if he is warm, ie. temperature returning.

The first time he was in hospital at 4 weeks, the most stressful bit was that he was not getting better, they had no idea wwhat it was and noone would tell me he was going to get better.

This time was different. We were told he would get better but we had the stress of the surgery which my DH and I found very traumatic, we hadn't prepared ourselves for what he would be like after the surgery, with the oxygen mask, rolling eyes from the anaesthetic, morphine drips, chest drains coming out of his chest. It broke our hearts.

I suppose I just need to keep talking about it, but am also afraid of keep going on about it to my friends as I don't want to bore them over and over especially as they heard it all from me last year when he was in hospital. Am sure they don't mind at all, is just me conscious of not wanting to drone on and on about poor us, poor DS, poor me.

FWIW dc was in hospital a lot as a baby, lots of scars etc, never asked about any of it.
we had a picture up (can't find it now) of dc next to a drip stand which must have about 6 pumps clamped to it and they've never asked a thing!! (generally not too bad at those spot the difference things!!)

has one really big obvious scar again never asked.

it will get better!

b;leurgh to doctors surgeries! I also have a top tip for that (you think you're paranoid lol - hang out with me a while longer ) - you don't need to wait in the surgery, just go and sit in your car and ask the receptionist to phone you nearer the time - or keep popping your head round the corner to see what number is up.

a funny story

dc needed an injection shortly after birth, could have had oral meds instead we were given a choice.

we said get it over and done with and give the injection

I have very vivid recall of the mw saying oh poor dc you don't want to give them an injection they're so young it might hurt etc etc

at the time I remember thinking 'dc has just been born if it was anything like my experience a teeny tiny injection will be neither here nor there'

over three months later after more blood tests than I could remember and multiple operations we left hospital.

last night dp and I were laughing so much we nearly cried at our recollection of what was said in that delivery room

honestly a bit of space and you will even find something about all this that makes you smile

If you are worried about taking your son to the doctor, you could always make an appointment for yourself and not take him (unless you are worried about you infecting him I suppose).

Digital ear thermometer is a godsend, so much better. We are now on second because my poor sickly boy (ha!)put the first one in the toilet!!

Re the checklists, put down numbers for your out of hours doctor and nhs direct - you will forget if you are panicking and its helpful to have them to hand. I would also say, expect to worry lots next time he has a temperature and don't worry about phoning for reasssurance. Health professionals are extremely supportive when it comes to little ones who have been poorly in my experience.

I hope your son has turned a corner now. Looking at mine today, he may have a dodgy chest (asthma attack in the night) but he's so full of life and mischief that in a way you'd never know what he went through last winter.

To be honest I think I would bypass the out of hours doc and local hospital and take him straight to the children's hospital A and E if he gets poorly again, god forbid.

They are in a different league there. The local hospital missed the pneumonia on a chest xray 2 days before he was admitted and discharged him after a few hours observation.

Is he likely to develop asthma from this then as not had it prior to illness?

Thanks for all the advice and good wishes.

I had out of hours doctor's number too because I needed to speak to someone during swine flu crisis and nhs direct were not calling back. Its not always ideal to go to A&E in the middle of night if you aren't sure. I have both numbers so can speak to whoever is quickest. My experience of out of hours gp hasn't been great though - at one point I was told I should check symptoms on the internet because it was a 5 hour wait for a callback!

We don't know for sure if DS has asthma or if he has a viral wheeze and is prone to chest infections, but its being treated in the same way. He has had food allergies and eczema so asthma isn't unlikely sadly. However, not sure that it was "caused" by the pneumonia, more likely that he had underlying asthma which is why he couldn't shake off the bronciolitis.

We also had a bad experience with our hospital. Although he had pneumonia, he was discharged after less than 24 hours with no follow up arranged because he seemed "cheerful" when the doctor did his ward round. We didn't really understand at the time so didn't argue. He was then back in twice more because it didn't clear properly and it turns out his lung had collapsed but the doctor didn't review his records properly. The one thing I have learned from all this is to trust my instincts and not be afraid to push the doctors if you aren't happy.

time hopefully is the answer..... We have nearly lost DD on a couple of occasions when she had Meningitis, she also had to have surgery to have a shunt put in her head to drain the fluid from her brain, then suffered a big seizure a few years later

I was awful as I panicked about everything

But it does ease with time

Unfortuantly with the big seizure she had to go on a life suport machine again , I ened up having counselling and on anti depressents need to chat with some one

xxx

sorry, the end of my post went funny!!

I was just saying if it doesnt get easier for you over time you may need to talk with some one

Also dont feel guilty as you are not the one that went through it. You DID go through it. Thankfully your son will likely not even remember his experiences in Hospital, but its you that will, its a parent worst nightmare watching their child be so ill

Hope you will start feeling happier soon xx

and my next thought for the day . . . .

I just remembered talking to ds1 about his experience of hospital. he really had fun apparently . he remembers the clown, the thomas tank train with food on it, everyone bringing him toys. meanwhile I'm in trauma about the whole thing . kids hey! so another reason not to bother with the whole guilt thing! (ds1 did actually have a horrible time with lots of unpleasant interventions and is still needle phobic but it pales in comparison to the type of toys and dvds there were, the sticker he got for being brave etc - those doctors and nurses do the most amazing job)

I think medical crises are so much worse for the family watching helplessly from the side lines than for the patient who is involved in it all.

As an adult I nearly died froma nasty combination of problems, very sudden onset, and I can remember little about the first few days when I was in intensive care etc. Bits of what happened later were not nice, but I kind of got on with it.

However, it was terribly distressing for my DH and for my parents, there was nothing they could do and it took them longer to come to terms with it than I did. They also felt guilty (quite without any cause) about whether there was anything they could have done to realise I needed urgent medical help sooner.

Please give yourself the time to recover from what has been an awful experience for you as well as your DS.

Oh Riven that is so sad to read, I don't know what to say to you. I am so sorry to hear that.

Posts like yours do put some perspective on the whole situation and make me realise yes it was very traumatic and stressful and yes I do feel down and stressed and paranoid but what I am going through is nothing compared to what you must go through knowing that.

Anniebear, I hope your DD is ok now. Sounds absolutely horrendous what she has been through and you alongside her.

Every day DS seems better than the day before and it is so good to see him eating again as he lots so much weight but little things like tonight he wouldn't drink his milk really freak me out as he wouldn't touch it when he was poorly and I panic thinking is he poorly again but really if I think about it logically its because he had his tea really late so was probably too full up to have it.

Thanks again for the replies. Really helps me so thanks for taking the time.

DD2 was in and out of hospital for the first six months of her life, had lots of operations from 3 days old including emergency heart surgery, colostomy bag etc. I remember feeling exactly like you, I wanted to wrap her in cotton wool, she was so vulnerable and my instinct was to protect her. I rarely went out, apart from hospital appointments. I took loads of photos of the whole thing and sometimes look over them now and realise how awful it all was. Everybody told me she won't remember any of it so I've got the photos to show her when she gets older. I also ended up on AD's, I kept it together for so long but ended up falling apart when it was all over.

Feel what you're feeling, be kind to yourself, you have been through a trauma. My GP said it's hard enough with lo's when they're 'normal', let alone when they're ill!