Out of my mind with worry part 2

[YourRubyMaker]

for anyone who was on the original thread sorry it’s been a hectic few days . Intensive care was horrific he kept trying to wake up and pull his ventilator out his bp was unreal so they kept having to sedate him ,. Managed to get back onto the ward on Tuesday, weds a blur but yesterday was really positive he got his own wheelchair and managed some light physio,. Today we’ll back to shit really we had planned to leave the ward for the first time and have dinner in the onsite canteen he’s since been sick and his heads swollen,. Waiting to see if he’s gonna get an emergency scan or not , just feel like it’s a rollercoaster and as soon as you think you’re getting somewhere you don’t . Still waiting on biopsy results which won’t be until next week , toddler is so unsettled won’t leave dh alone which is making life really hard as I can’t leave ds but need to go do washing etc , it’s a nightmare

Thank you for the update, I had been thinking of you. You’re an amazing parent, please do try to look after yourself.

Thinking of you all OP. I hope the CT scan went well.

I'm also happy to help with washing, food deliveries, whatever. I'm in the south West.

I have no words of wisdom OP but you are all still in my thoughts x

I'm in Cambridge. Are you at Addenbrookes by any chance and if so, what do you need?

Thank you for finding the time to let us know. You have been in all our thoughts.

Really hope the scan went ok, but remember recovery is never always in a straight line, there will be blips and setbacks along the way. That is normal.

If you said where you are I am sure some Mumsnetters would love to drop off some food or something for you. There’s so little we can do to support you.

Glad to hear he's out of ICU, OP. I hope the ward can offer better support for you to rest a bit, it must be a nightmare dealing with the noise etc when he's still so poorly.

We are all thinking of you. And I doubt you are in Crumlin or Temple St, but on the off chance I'm also happy to help.

I'm Newcastle area if I can be of any help? If you're near I can do a food drop and collect washing 🌺

Adjusting to a normal ward from intensive care is incredibly hard. My son was in intensive care for 7 weeks and it was a difficult transition. It's noisier, the ratio is 1:4 etc but it does get better.

They aren't generally around at the weekend but the play team during the week will happily sit with your son if you want to pop out. healthcare assistants can also do it at times too depending on how busy the ward is.

Swap with your partner, maybe even just for an hour or so at first. It will really help you.

Thinking of you.

Thinking of you all OP. Offering a handhold and hoping the scan has gone well.

I wish I had something useful to say but all I can say is I totally get why you are so frustrated being on the ward. Just keep thinking that every day is a day closer to being able to go home.

a family member whose child was very ill was visited by a charity called Momentum who specialise in supporting families going through cancer or other serious illness. They had volunteers onsite in hospital meaning she could at least grab a shower or sandwich while they sat with her dc. This is in London and I think they might be only south east but if there is anyone like that around?

Been following OP and sending you a massive handhold. Another Geordie in Newcastle offering support if you are up this way.

Oh @YourRubyMaker I am so, so sorry to read your update. Your poor DS and poor you!! Im praying his results from his CT scan are clear and he starts to make an improvement and feel better. You are not alone xx

You have been on my mind all week OP. Thank you for the update. Line everyone else I am happy to help if you are local.

Re noise on the ward - in the past I have spoken to nurses and asked for their help to set quiet time in the evening eg eight pm lights go down, headphones only. I always complain nicely about noisy tablets and conversations, even if it's the nurses themselves who are chattering loudly at midnight in the corridor. Explain that your child is v ill and needs rest, and ask can they help make sure that happens.

Sending you lots of hugs. Unable to help at the moment but sending positive thoughts your way ❤️

So sorry to hear about the latest setback, hope someone is on hand to take charge and ensure everything is done to help your son. This is just torment for you all, am sending so much sympathy.
People want to help, if you can say which hospital you are in there will be MNers close by ready to leap into action with whatever you need. I don't think Frimley Park do children's neurology but if it's there, that person is me.

Thinking of you OP. Just came across your thread and wanted to add another message of love and support for you and your family. Hope there is reassuring news from the scan.

I’ve been thinking about you over the last few days, just want to send some love ❤️
as previous posters have said try and ask others for help, I’m near Newcastle and would be happy to drop things off for you. Do what you can to make things as easy as possible for your family xx

I'm so sorry that you're on a loud busy ward,
that's exactly what you don't need right now. Please talk to the nurses and see if they can get your boy moved to a side room or help keep the noise down on the ward. I don't understand why people are so inconsiderate. Sadly it's all too common.

But it is good news that he's on a ward. He wouldn't have been put there if he needed more specialist care.

I've been thinking about you and your family over the last few days and sending love and strength to you. I hope things start to improve. Like previous posters have said, there's an army of MNers rooting for you. You only have to ask and people will come and help with whatever you need.

I'm near the UHCW, Coventry and more than happy to assist in any way.

Do you want to say where you are?
I'm certain a few who are local can help

So sorry to hear your news, it's really crap that you're on a normal children's ward, your little lad needs peace!

With regards to leaving him, I understand your worry about the nurses being too busy, is there anyone else? We did long stints in hospital through my sons treatment and there was a Mum there who was quite trapped (no one to swap with) and I'm fairly sure the play team used to help out by sitting in with her daughter so she could escape for a bit. Might be worth an ask.

I don't know where you are, but I'm not a million miles away from Southampton if you need anything x

It must feel impossibly hard right now. Any chance dh could take the toddler to a grandparent? Needs must. Your going make yourself ill if you don't get a break. Have you got any sympathetic siblings?

Dh had a bed accident once and was rushed to a major city A&E and I couldn't go as had no one to watch my kids so I kind of know how shit that is. Even when it looked like he was going to die I had no one to ask

On the off-chance you're at the JR in Oxford I'm local and happy to help with deliveries and laundry, can also look up and help you make contact with local voluntary services that can help (I know a few people who are involved in this sort of thing).