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.

I have been reading your posts max and I know that you have both been through such a lot recently.I hope that things go well for you.x

Maxmissie

I have also been reading. I don't usually post but I just wanted to say that I'm thinking of you. You're being very strong for your family and you will get through this. x

Thanks for the msgs, am trying to stay strong but sometimes it's all a bit much. Just want this all to go away but know that it won't. Am so angry that this is happening to him, how can something like this happen to such a little boy?

maximissie, so sorry you have had such a stressful time - such a relief that the meningitis has gone, but the worry while they sort out the lump must be immense.

I know several children whohave recovered extremely quickly from surgery to remove lumps in the brain, so my fngers are very much crossd fo you.

Don't worry about the GAs. DS has had 9 now, starting from when he was a baby. They take SO much care of them, and the GA itself isn;t really an issue.

God, it's bloody gruelling being a parent, isn't it?

My thoughts are with you.

It's so unfair. And relentless.

It's just so stresful having it hang over us, just want to know one way or the other so we can prepare for what lies ahead. Trying to reassure myself that it can be treated and as it isn't causing any immediate problems that it can be sorted out. But every now and then these horrible thoughts creep in.

I know the GAs will probably be OK and that he won't be having a very strong one or for very long but it's just frustrating that he has to have them for fairly straightforward procedures just because he's a baby and won't keep still otherwise!

He was seriously ill with the meningitis and he bounced back pretty quickly so hopefully he will be resilient to anything else.

It's just so bloody unfair and thought that 'normal' baby problems wouldn't phase me anymore after this but am still getting stressed about his almost obsession with milk which has started since coming out of hospital and that he is now awake for 2 hours a night when previously he was a good sleeper. It feels like we are being punished for something, nothing is being made easy for us with him at the moment, wish we could be cut some slack!

Am going to bed now, will be back soon!

I'm so sorry, what a trauma!

I'm guessing the biopsy will be able to tell you exactly what it is?

so were it not for the meningitis, they would never have picked up this lump, do they think?

what a rollercoaster you are on.

I agree, if life was fair, somebody would certainly be cutting you slack right now. Your poor baby and poor all of you.

He sounds like a right trooper your lad!

maxmissie I really feel for you and what you're going through. my dd is back in hospital today (she has been in frequently as she has a lifelong condition).

I have been hoping so much this week that the infection she was being treated for would go, but it hasn't so they have scheduled surgery for tomorrow. We have been into hospital every day for over a week but when they phoned this evening to ask us to bring her in because the decision has been made to operate I howled (she was sleeping so didn't hear me) and have been close to tears ever since. It is so so painful to watch your child going through these things. I too just feel she is too young for this and I soooo wish I could make it all go away - I can't even explain to her properly.

It is good to get this out on mumsnet but I hope also that you have friends and possibly family to chat to. After the sudden onset of my daughter's illness, I saw a counsellor and was treated for post-traumatic stress, so if you can get hold of any extra support for yourself, please do.

Also, I hope you find friends in the other parents at the hospital as this has been a great support for us. Other people who have been through similar can really understand.

I wish your little boy all the best and I hope you can get a few days away together as a family once you are through the worst.

Just wanted to add my thoughts to all the others here. So glad your boy has recovered so well. Sending good vibes for the next stages of investigation and hope it turns out well for you all. There is no pain like the emotional pain you feel on behalf of your child. I feel for all of you who are going through it. XX

Thanks for the msgs, have had a nice weekend and have not thought too much about it so am not feeling too bad at the mo!

mummeeee so sorry to hear about your dd, how old is she? How did her operation go? Hope she is OK?

It is so unfair that children have to go through these things, it is what makes me so sad and so angry. My ds is so young so at least he won't remember any of this. Have got family and friends to talk to but sometimes feel like their lives are carrying on and ours is on hold and so sometimes it's hard to talk to them. Had thought about counselling but think am ok at the moment, I might need it as time goes on though. Am hoping that we can go away in June, we haven't booked anything yet and can't do so know until a few days before.

well done you for dealing with all this, whenever it's all too much go and lock yourself in loo and breathe in for 5 and out for 7, do it a few times, close you eyes, it's sounds bollocks, but it really helps, it takes a few minutes I promise.

maxmissie - so very sorry to hear about your brave DS but pleased he recovered from the meningitis well.

I am posting as my DS has had an aggressive and very fast growing brain tumour (went from nothing to size of a golf ball in 2 weeks) and is now 18 months out of treatment and doing okay-ish (in fact, he does better than we do as he's 5 now and doesn't know the half of it). There are of course other types of brain tumours which are slow growing which you've obviously been told.

Have you seen a paediatric oncologist or neurosurgeon yet? Which hospital is he under - if it's Bristol Children's, I can maybe give you a few names of the docs we worked with the make sure our DS got the best care possible in the UK.

Hope he is okay and hope you are too although I feel at the moment you're just getting through each day...and that's all you can do. Do not beat yourself up if the ironing or cleaning doesn't get done. If your friends and family ask if you need help, ask for meals for the freezer and maybe the ironing or something? Or ask them to take your children out to the park so you can have a lie down (and maybe catch up on sleep although again, don't beat yourself up if you cannot sleep).

Ask for help if you feel you can. And do let me know if I can help re: hospitals.

We're having a nightmare 24 hrs - ds started badly wheezing last night just as we got a phone call from the hospital asking us to take him in this morning for a lumbar puncture. Bit last minute but fortunately I was on leave today. Anyhow his wheeze didn't improve so once at hospital drs decided not to do lumbar puncture as ds wasn't well enough for a general. Lumbar puncture (and hopefully mri) rescheduled for next week. So take him home and get drs appointment about awful wheezing, dr takes one look and says I need to take him to hospital!

So back to A&E where he's given some oxygen and a nebuliser, which helps alot with his breathing and now he's been admitted for obs over night so dh is there with him now whilst I'm at home with dd. It seems to just be a bad virus but at the moment it another thing we could really do without! Fingers crossed he can come home tomorrow.

wheredidmyoldlifego thanks for the info, ds is under a paediatric oncologist at the mo but he has been talking to the neurosurgeon as well (the dr that is not ds!) He's being treated at Queens Medical Centre in Nottingham, they have a specialist children's brain tumour centre and also have a children's cancer ward so fortunately we appear to be in the right place and won't have to change to a different hospital.

Have been making good use of friends and family for meals, washing and ironing and babysitting dd, am so grateful live close to family.

masmissie - so sorry to hear you and your DS are having a bad time of it. Funnily enough my DH always does the hospital nightshift too although the times I do, I am pleased I do it although couldn't do day and night there even though I'd like to!

please you're at Queen's - they've a great reputation and you sound like you're on top of things and talking to the right people. Hope once the MRI and lumbar puncture are done, you'll be able to get rid of the oncologist as you won't need them eh? have you in my thoughts and do update about MRI lumbar puncture results.

Pleased your family are around you. So important to have help and support at this time.

maxmissie - just checking back in to see how he's doing. Hope he's now been discharged again and you are home together. Really glad you are finding some consultant doctors you can trust. Over time we have built up relationships with ours and it has helped.

My dd is 22 months - had surgery Easter Sunday and then again last night. Last night's didn't go well. It revealed problems for the future, although for the time being we have a working central line (similar to a Hickman line) which my dd needs to survive. The worry about the future is so intense I have spent much of the last 24 hours crying, but I feel I need to do that in order to start putting it in the right place in my head; so I can start living for the day again.

My dh also stays over at the hospital with her at the moment. I am 39 weeks pregnant with dc2, so all is very worrying. We had a good few months at the end of last year and I was really hoping dd's health would be stable around the baby's due date.

Fortunately, the sun is shining and we are hoping our dd will be able to be discharged today. The next few weeks are critical and the future after that is uncertain but she is smiling and so we are too.

keep going - you're doing well.

mummeeee - sorry to hear that you have found out more problems for your dd, hopefully she has been discharged and is feeling OK? You must be exhausted both physically and mentally at the moment, it's tough enough for me and I'm not pregnant so can't imagine what it must be like for you at the moment, you must have very contrasting feelings of excitement about the new baby and worry about your dd.

Hope everything goes well with the birth and that your dd is excited about the arrival of a sibling, do you know what yo are having?

Ds is recovering well from the wheezing and his lumbar puncture and mri scan are scheduled for next week although at the mo are going to be on different days which is frustrating as it means two lots of starving him and two lots of generals. Hopefully the hospital can get them on the same day but I'm not holding out much hope!

My heart goes out to you and all the other Mums on here whose DC have health problems.

I have experience of hospitalisation with DD, for much less serious illnesses, it is so worrying. I can't imagine how you are feeling but you are in my prayers and positive thoughts.

maxmissie - well done for being so brave. you sound like a wonderful mum, and your children must be pretty tough cookies too.

keep thinking positively . sending happy blessings to you and your family

also wanted to add that you are doing an amazing job, looking after a poorly 7 month old, AND another child and spending all this time at the hospital AND working! Have you given yourself a pat on the back? because most mums are pretty worn out with just looking after a 7 month old baby - I know I was.

You are clearly very strong, brave, capable, resilient and a real fighter and that will surely have passed through your genes to your little one !

Maxmissie - thanks for the update. My DS had another MRI under a general last Friday and we find the starving times really useful whereby if he's having a general in the afternoon and has to be at the hospital for 12pm, it means no milk or food past 7am so we wake him up early to give him as much milk and food as possible.

If it's an early general anaesthetic, then we again semi-wake him 2am-3am-ish to give him milk otherwise he is a nightmare. It's far easier to do this than not have him have anything in his tummy at all!!

They will usually do the young ones first on the list - plus I hate to say it but they're unlikely to do the two on the same day and even if they do, the MRI is likely to be done in one part of the hospital (down at Xray / MRI) where they'll have their own anaesthetic room. The lumbar puncture will usually be done in another part of the hospital (clean / sterile op theatre or procedure room), so it's more likely your DS will need two general anaesthetics.

kalo 12 am not sure how I'm managing at the mo, just clinging on and not having much time to myself!! And having a fantastic dh...

wheredidmyoldlifego ds is due at hospital at 8am so will give him a last feed about 2am tomorrow morning, at least that will get him through the night and then we only have a short time to distract him! Not sure what they're doing about the generals, was wondering myself how it would work with the mri place being the opposite side of the hospital from the children's ward.

Maxmissie Ds had an Mri at the same hospital they have their own anaesthetic room in the mri department so we were taken from the ward down to the department then in the aneasthetic cubical.
Have been reading your thread and keeping things crossed for you x

maxmissee, mummeee - thinking of you both x

maxmissie - thinking of you today and hope all goes well. Hope the scan comes back clear.