My darling boy is in hospital and I am struggling

[maxmissie]

I haven't posted many times before but really need some support and advice at the moment, my world has turned upside down in the last few days.

My 7 month old ds was v poorly on tuesday and gp didn't know what it was so sent him to A&E who also weren't sure and put him in the assessment unit overnight. During the night he had a fit and they thought it was probably meningitis (which has since been confirmed) so were treating him for that. They also did a ct scan which has shown a lump on his brain. They don't know what it is but are doing an mri scan next week to try and get more of an idea what it is.

He has been really poorly these last few days and it is breaking my heart seeing him like this. Everyone says to take one day at a time but all I can think of is what this lump might be and lots of horrible scenarios are running through my head. I am absolutely terrified about what might happen and am so sad that I can't protect him from all that is happening.

I am just about clinging onto normality as we have a 2.5 yr old dd who we are trying to keep life as normal as possible for but sometimes it is all too much.

Also forgot to say that I am back and forth from the hospital so am not always going to be able to reply immediately.

Oh gosh no wonder youre struggling, anyone would be. Sounds like youre doing your best under very difficult circumstances though.

I wish I could say something other than I hope your wee boy makes a full recovery very soon.

Oh, Maxmissie, I'm so sorry to hear about your little boy. I know there is nothing I can say that will make it any better, but you are in my prayers.
Try to hold on to the 'now'.

Z x

bless you - what a horrible situation for you!

I can only offer the comfort of what happened with my niece when she was 21mo - she was diagnosed with a brain tumour (benign) on her cerebellum - but it was blocking vital tubes that allow the CSF to travel around so giving her some grief. Anyway, the operated and removed it fully in a 9hour op (traumatic for my sister!) and she is now a healthy 4yo, soon to be 5.

Good luck and remember that even if it is a tumour diagnosis, they might still be able to remove it successfully.

Very sorry to hear your wee one is ill. Well done you for following your instinct and taking him to A&E when you weren't sure what was wrong. He's in the best place and will think the most important thing is that you're there with him. I hope you have sympathetic doctors, nurses and other staff on duty who will be patient and answer your questions to the best of their abilities. Are you able to ask a friend/neighbour to look after your dd for the odd hour here and there so you're not being run ragged all the time?

If you have such a thing as a thermos flask on your house, my only advice would be to take your own tea for your hospital trips to save on time and money visiting machines that dispense horrible hot beverages.

Hope there's good news for you soon.

Oh I can't begin to understand how stressful and horrendous this is for you BUT you just try to focus on making your ds as comfortable and secure as possible and don't even think about the possibilities other than bringing him home, safe and well.

Sending you tons of sympathy and hugs this must be very traumatic for you.

I'm so sorry to hear your baby is unwell. I completely relate and sympathise, as earlier this year my baby was hospitalised with swine flu and it was just the most horrific situation. She was on a drip, had tubes coming out of here, there and everywhere and had to have a lumbar puncture. Very frightening.

She has made a full recovery now, and I hope and pray your baby will, too.

Do you have help and support? Loved ones looking after your needs while you concentrate on your baby's needs? It helps.

Thinking of you.

God how awful for you and your family, I would be struggling too.

Hope he recovers very soon , keep focusing on the positive , he's being treated and will get better.

You just need to be as strong and positive as possible , and of course having a good cry now and then will help too.

I'm so sorry you are all suffering at the moment. I have some experience with being in hospital with an ill child and trying to keep things normal for the others as DD3 has cystic fibrosis and can be very ill. Its really hard, I wish I could say otherwise, but you do cope and even though you think you can't you honestly will.
We also try to keep things normal for other dds but sometimes its not possible and they do understand in their own little way. DD2 is only 3 but we have realised she needs to know what is going on (to a certain extent)or she worries and this makes it harder as then she starts to misbehave. Understandably in the circumstances!
Sending you lots of hugs and I really hope you have good news soon.

Thanks all for the msgs, am hoping that the scan will show something benign or something that we don't need to worry about but there are no guarantees. Whatever it is doesn't appear to have been affecting him so far but if it hadn't been picked up it may well have done in the future. The meningitis has at least meant they picked the lump up. Am willing him to get over the meningitis and so far the signs are good, he is moving his arms, head, legs and eyes, can still sit up, is drinking milk and trying to play with toys a bit but he is also very calm and not making much noise which is unlike him, am panicking abit about his hearing having been affected but my dh thinks he is reacting to noise so don't know what to think. Am just panicking about every little thing at the moment.

our families all live reasonably close by and have been helping out loads as have some of our friends, cooking meals, looking after dd when we are changing hospital shifts in the evening. This is helping a great deal, don't know what we would have done without them.

Haven't needed a thermos flask yet as there is a kitchen with a kettle and teabags on the ward!

what an awful situation for you. just wanted to add my support during this dreadful time. my ds2 was hospitalised and extremely ill for a week over christmas (we were abroad at the time too) and my overriding memory of that time is of the feeling (i had never experienced previously) of just simply not knowing what to do with my fear and panic and sheer distress at seeing my little baby so ill. it was extremely overwhelming and difficult to manage at times. just thinking about it now takes my breath away.

keep on checking in here, i (and am sure many others) will be looking out for your updates. wishing you all the luck in the world for a speedy recovery for your little one and for the strength to get through it for you.

I really feel for you, it is an awful thing for a child to go through and an awful thing for a mother to go through.

I hope you manage to cope with the day to day. If I were to give you any advice, not that I am qualified or anything, I would advise you to have a little time to yourself each day, maybe in the bath or on a walk to really cry and mope and let it all out. Then, as you enter back into your daily activities, you may feel a little better having really 'felt' how you are feeling.

You have every right and it is totally understandable to feel completely and utterly devastated with the situation, but, as others have said - hope and positive attitude go a long way.

I hope with all my might that your little angel is well soon.

Oh Maxmissie, I have just been in hopsital with my DS (18 months) for 9 days, although for something far less serious

None the less, I was worried sick, and can relate to the pain and worry of having a baby in hospital. I struggled to, and had a sob or two in the parents' room and toilet. It really was a case of taking one day at a time. If this helps then do it ! Because we were in for such a long time, the nurse became quite friendly, and were so kind to us. I took all the time off work that I needed (I appreciate that I have a very understanding employer, and am lucky to have a female boss), but also came home for the night every 2 or 3 days. You need a break to recharge you strength for your DC.

And make the docs speak to you like a normal, intelligent human being! Once they have a good diagnosis, ask them about a treatment plan and prognosis etc.

sorry to hear your news about ds hope hes on the mend soon

he sounds like a brave wee soul so i'm sure he'll weather this.... no matter what, you can always come here to let off some steam if things get too much. x

so sorry to hear what you are going through.

my little one had meningitis at one month old and i have to say that it was the most horrific experience of my life. she is fine now but the memory of it still makes me feel physically sick.

just take it day to day and you will get through it. XX

Oh my. Sending lots of good wishes for your little boy's recovery.

My advice comes from the perspective of having been in hospital seriously ill myself and seeing the strain it put my family under (have not gone through it with my own DC thank goodness) - do look after yourself, take advantage of all offers of help and take some time off. It is really draining looking after/regularly visiting a hospital patient and you do need to keep up your own strength - as the saying goes, put your lifejacket on first before helping others.

Just want to add my best wishes for your son as well.

It is just awful to see one's children really ill and helpless having to go through tests they find distressing .
I very much hope that the scan will give some encouraging news.

Do look after yourself, you'll be of more 'use' to him is you are well rested and fed and watered.

Very very best of luck .

Thanks again for all your msgs, have just got back from the hospital, it's dh's turn there tonight. He was mostly asleep whilst I was there but has been OK whilst dh was there this afternoon, watching and playing with his nemo balloon!

Thankfully our families and close friends have been great, am taking all offers of help of looking after dd and have asked for meals etc to go in freezer to ensure if nothing else we all have something to eat.

It's really hard to keep a semblance of normality for dd as the house is so quiet when just the two of us are here. She's super excited most of the time as she's seeing loads more of her grandparents and aunties/uncles than usual and is only playing up a tiny bit, no more than I'd normally expect! She's been to see her brother but is a bit put off by his plasters tho!

Have spent at least one part of every day in tears, am fearing the worst whenever I think too much about it. The worst times are when i'm by myself, driving to and from the hospital or walking to and from the car, it all runs through my mind.

Thanks once again to you all, it really helps to know you are all out there! x

aww maximissie , it must be hard leaving him there and hard spending so much time there without your dd. What a stressful time.
Good that you have family close by.

I hope he has made an improvement when you see him tomorow.

couldn't read this and not say anything, i am also praying and sending positive vibes

its good to know that he's slowly getting over the meningitis, remember how tough and resiliant babies can be x

Maximissie - I sympathise. My son recently got diagnosed with a brain malformation (Chiari) that will affect him for the rest of his life. He was 4. He's just turned 5.

When I first found out, I was beside myself, but I am now starting to find my feet. I recognise what I felt as a process of grieving. I still am, but I am getting to the later stages.

I'm hoping whatever is showing on your son's scan turns out benign. If it doesn't, then there will be hundreds of hands reaching out to hold yours on here.

Can only post briefly for various reasons sorry but just wanted to say 2 things
firstly take it one day at a time try not to spend loads of emotional energy worrying about what may be, put it to one side and think about the hear and now. You have enough to do to get through today and you can worry about the rest if it happens.

the second is along the lines of just hang onto the thought that one day soon he will come home and you will be back to normal and this illness will pass into your family 'folklore' or 'this too will pass' as others say

good thing you got it so quick it sounds like he is doing really well

fingers crossed for you all