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.

Wanted to add my thoughts and sympathies, maxmissie....my dd2 was very ill at 4 weeks old in HDU for a week, and I had a (just) 3 yr old dd at home. It was over Christmas, and dd1's birthday, too - very stressful.

I too spent part of each day (usually in the car between home and hospital) in tears, and a lot of it felt so unreal...even though its extraordinary how fast one can get used to hospital life, the swinging between home and hospital is another thing altogether. Do, do take care of yourself as much as you can...eat, sleep, talk to friends when you can. I'm glad your ds is recovering from the meningitis (Nemo balloon very good sign!) and hope the lump turns out to be just a lump needing nothing further.

FWIW, dd1 did need to talk about that time occasionally for a year or so afterwards...but basically coped very well, and didn't suffer any long term effects: and that was without loving GPs around - it was just me and dh. So your dd sounds beautifully well cared for, and I'm sure she'll be fine

wishing you stamina and your ds better soon, xxx

wishing you all well, so hard for you all. x

I have nothing to add, except to remember to look after yourself as well as your DD and DS as much as you can (I'm sure others have said this and I know that it is much easier said than done). You need all your strength

Wishing you well xx

wishing you and your family well.
I hope you turn a corner soon.x

Just wanted to let you all know that ds is recovering really well, I went in yesterday and he greeted me with a smile! He has been playing with his toys, smiling, making baby noises, wriggling and sitting up so is very much getting back to his normal self. There don't appear to be any signs of any damage, he can move all his limbs, can see and we think can hear OK.

Am feeling a lot better but still have to find out what the lump is, hopefully he will have mri scan tomorrow or Thursday plus they are going to give him a brain wave test at some point as well. Am trying desperately not to worry too much about it.

The drs and nurses have all been great, they have run through some of the scenarios that it could be without going into too much detail. All they can say is they think it has been there for a while, it may have been there since before he was born and that it doesn't appear to be growing quickly or causing him any problems at the moment.

My dd has been very upset today tho, my dh brought her to the hospital at lunchtime and she cried all the time. Think she is feeling a bit unwell but is also freaked out by my ds having plasters and bandages on (she doesn't like them) and because she never sees us together at the mo. Am going to start a separate thread to try and get some advice about how people have dealt with their other children in similar situations.

Thanks again for all your support it means a lot to me.

Maxmissie - so glad to hear that your DS is making good progress. Babies are amazing!

I hope all the other tests go smoothly. Thinking of you and the rest of your family (particularly DD) xx

fab news maxi

Fantastic news - well done little maxmissie! Your dd will inevitably be upset & confused &, although it's hard for you & your dh, it's important to let her express those emotions. Even though she's only little, she will understand quite a lot of what has been happening to her brother & will take her cue from you on how to respond. Does she have a teddy that she could put plasters & bandages on? There are some good picture books for siblings too. If you are in a paediatric unit, there should be a play therapist who will be able to help - they're usually wonderful.
Hope everything continues to go well.

thats great news maxi

I second the play therapist - they did wonders with my youngest when my oldest was in hospital.

Thinking of you all for the scan

Maxmissie, I'm struggling to find the words, but just wanted to send you all our best wishes; we've been more or less in your situation and it's hard and will be hard for some time to come

Look after yourself, accept all the help that is offered and don't hesitate to ask for any more help that you need. Be prepared for aftershocks and do keep taking things one day at a time. Give your DD plenty of hugs and find some time to spend together with her. Will they let DS out of hospital for a few hours so you can go out for a bit as a family? My DD (at 2.5) coped much better seeing her sister outside hospital than in - and it was good for all of us to taste some fresh air so to speak

Good luck with the scan later this week, will be thinking of you

Thanks all so much for your support, it has really helped over the last few days.

oricella sorry to hear you've been in a similar situation, it is the hardest thing I've had to deal with and something you can't ever imagine until you are going through it. Not sure we can take ds out as he is attached to an iv for his antibiotics which they are permanently running a small amount of fluid through to keep it open.

Will see if there is a play specialist on the ward tomorrow as well, sounds like they could be really helpful.

Will let you all know about the scan. x

so pleased to hear he is recovnering well from the infection, maxmissie - fingers crossed that the next bit is good news as well.

My sis had an older DD and a baby DD as well at the time of my DNc going in for her operation etc; the older one seemed to do quite well by just treating her sister pretty much as normal, just being careful not to knock her. They spent a lot of time together at the hospital as a family - my sis was on mat leave still and I think my BIL took time off from work (they went into the hospital on the Friday, she had the op on the Monday and I can't remember how long after that she was in for, I think maybe until the Friday again but it might have been less than that). Letting your DD be more part of the scenario now that your DS is on the mend might help, be there as a family if you can - that seemed to help with my DNcs.

HTH

You're doing fab - maxmissie; and at least as far as the meningitis is concerned it sounds like you're over the worst. Strange though how quickly you get used to all the spaghetti attached to your DC's...

If I were you I would ask if they can stop running the fluids for a bit - but I guess it depends on how they are feeding in the AB's - if the canulas are dodgy then it may indeed not be possible; my DD had a central line in her groin, and I think they let us out for a bit around day 10 .. it really made a difference to us

By the way - I think your DD will be fine; my oldest doesn't really remember anything about it now and she was a similar age as yours when it all happened. Thankfully though, she never got to see the worst of it as we were 150 miles away for the first week, but it was hard on her to wake up and find my and DD2 gone ... I'm still absolutely impressed by the way she coped with it all. Take care

Maximissie - how are you doing today? Good luck with the MRI

Thinking of you

I am so sorry you are having to go through this. My DD had a brain tumour and it was removed when she was 18 months old. Thankfully it was a benign tumour which she had probably had all her life. It was a very scary time but she is now almost 13 and had her last scan last year. Slow growing lumps are better than fast growing, more likely to be benign - or so my surgeon said at the time after she had her MRI scan and before the op.

I to am thinking of you and your family. It helped us to take it one step at a time and not think past that step - passing it on if it helps

I do hope your DS continues to make improvements and has a positive outcome after all this, Max.

Hi there
Just thought I'd update you on how we're getting on, been a hectic few days so haven't been on mn for a while.

Ds finally had the mri scan on Friday, after one scheduled for Thursday was cancelled. Not much fun to starve him for six hours beforehand only to be told at the last minute it wasn't happening. Anyway it's done now, hopefully going to see consultant tomorrow to find out results. Ds also had an EEG last week where they stuck loads of probes to his head and monitored his brain waves.

No real indication of what the lump maybe but that it could have been there since from before he was born. I was thinking that a slow growing lump is less likely to be an immediate threat than a fast growing one but I keep getting thoughts in my head that it will be inoperable and that they won't be able to do anything. I can't imagine my life without ds in it, he is such a lovely little boy. I know I am speculating but sometimes these horrible thoughts flash through my mind.

Aside from all this, we had a lovely surprise on Friday night when the dr told us we could bring him home as they could administer the antibiotics once a day and his temp, blood pressure etc all seemed OK. It's been great to do this and spend some normal time with him and dd. Dh is at hospital with him at the moment, went yesterday and we were there for nearly 3 hours!

Anyway better go now but will try and post again as soon as I can. xx

thanks for the updatemaxi
great tto hear he is improving enough to be allowed home
that will please your dd

The panicky thoughts are entirely natural and every mum would be thinking the same.

hope the mri scan results are less worrying
will be thinking of you

Another quick update...

Ds was discharged from hospital yesterday as finished antibiotics for meningitis. He seems to have recovered well, just getting back into the swing of things at home! His sleep and eating are a bit all over the place but that's too be expected really! He went back to nursery today and we had a day at home sorting out stuff we've not been able to do over the last few weeks, back to work tomorrow!

Still don't know a great deal more about the lump, the consultant needs to talk to a neurosurgeon and can't speak to him until Friday. All they have said is that it has a lot of blood vessels in, which has implications for possible removal/invasive investigations but also means that it could just be blood vessels and may disappear naturally over time. It's all a bit vague at the mo but he doesn't think that it poses an immediate threat to ds.

Am veering between worrying and feeling almost normal and not thinking about it all.

fab news maxi
so pleased for you

he sounds a strong little chap-am hoping all will be resolved soon for him

So glad to hear that you are both home. That feeling of helplessness when they are hooked up to machines in hospital is horrid (my DD was three months premature) Keep on top of the doctors for tests and results. Asking lots and lots of questions was the key for me. It took a while for the details to sink in but I felt so much better for asking and trying to understand what was happening.

great to hear you are home. I've been thinking about you. Take care and have a wonderful family weekend

Just read your news - so pleased you're home and that your DS has recovered so well from the meningitis. He's a lucky boy! Hope the lump works out all OK too

great news that he is home and doing well. Hope you get good results from scan too

Don't know if anyone is still reading this! Heard from the dr this week, they still don't know what the lump is )although a brain tumour is still high on the list )and so ds has to have another mri scan in the next few weeks, plus they are going to do a lumbar puncture to see if they can work out what it is from the cells in his spinal fluid, although this appears to be a long shot and the chances are he's going to have to have a biopsy .

Have been managing to get on with real life since ds has come out of hospital without thinking too much about what the lump might be but now we've heard from the dr it has brought it all back to the forefront of my mind and made me really worried - lots of horrible scenarios running through my head.

Ds is just his usual self at the mo (apart from drinking stacks of milk and being a nightmare in the night!) and it makes me feel so sick and angry thinking he's got to go through these procedures and have general anaesthetics. He shouldn't have to go through all of this he's only a baby .