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

Just coming on to say I am thinking of you all and hoping so hard for positive news for you xx

❤️

Would someone from your ds's school be able to come and spend some time with him? I know I would as his teacher as would any of the lovely TAs I work with.

Sending you all ❤️ and 💪

surrey/ Sussex if I could be of help x

I can’t private message you but if you are in a hospital near me I am happy to come and help you. Even if you just need to hand over a bag of washing.

I’m so sorry you’re all going through this.

Thinking of you OP. Really hope you can get a break and that things start to improve.

Just wanted to send a handhold. You and your family have been very much in my thoughts. I hope he doesn't need more surgery.

Leeds of any help to you x

Leeds here too. Well, nearby. My son is under LGI and spent 300+ days there until early this year. Leeds is our second home now.

Sending love and prayers to you and your boy 💙 x

Sending you much love. Also happy to help if you are near me.

Cheshire here. Happy to help if I can.

If you are at RMCH in Manchester happy to bring what you need x

Was glad to see your update. Although sorry that everything is so tough. Sending positive thoughts.

Near QEUH in Glasgow and would be happy to bring you whatever you need if you’re in this area x

Near Edinburgh , happy to collect laundry take to launderette and return. Happy to go shopping too. It must be so hard … You will get through this - “when you’re in hell, keep going” xx

If you don’t get a MN person to help out, I bet some other parents on the ward would step in. Very sorry to hear about what’s happened, it sounds so hard. I was in for a long time with one of my children, and after about a week there were some familiar faces from the parents kitchen. A lot of them really get it. I was lucky that some school mums stepped up, but I know that I would have helped a mum who didn’t have support, and I would have asked one of the other ward mums for help if I was desperate. I hope you do post which hospital you’re at, so some of us can help. Sending prayers xx

Oh @YourRubyMaker - you’ve been in my thoughts all week and am so relieved to see your boy is out of surgery.

I am sending lots of love to you all and again would be happy to help, whatever you need if you’re nearby. (London)

You must be so so exhausted - maybe a night’s sleep could just help a little. I know it feels impossible but is there anyway you can sleep in the room once your toddler is asleep? And your DH come to the ward?

I really hope the swelling subsides quickly for your boy - Sounds like he’s been so incredibly brave xx

Hope the ct goes well, thinking of you

I’ve been thinking of you, your precious boy and family so much. Never apologise, as PP’s have said, we are here when you need us - you don’t owe anyone anything. You have your boy and we are here to help not add another burden to update anyone. If any of the PP’s are nearby, I would accept the help. It must be so hard shouldering all of this alone. You are a great Mum and your boy is amazing. I am hoping that the CT scan and biopsy results are good news.

I'm really hoping things get easier soon. I've been thinking of you and your son since your first post. I hope the swelling goes down and that he doesn't need another operation. He is an incredibly brave boy. Sending you lots of love xxx

Regarding the individual rooms, they tend to be allocated on the basis of the infection risk a child poses, rather than how poorly they are. But do keep complaining talking to the ward managers about your son's need for peace and quiet so theyre thinking of him when a room does become available.

And you must swap with your dh so you can sleep a bit. You will be better able to advocate for your son and support him if you get at least a little rest.

I live half an hour away from Sheffield Children's Hospital and could easy pop in with whatever if this is where you are.

I’ve been thinking of you every day this week.

So pleased to hear your son’s made such astonishing progress since the op: light physio a few days later! Really hope the swelling’s nothing serious and he doesn’t need another op.

You’re being so strong given you have no family support. It’s really tough when you’re juggling a toddler. Can really understand you want your little one close, but is it possible your DP could drive him to stay with family for just a few days, to give you a bit of a rest? Or could your family stay in Ronald McDonald House to allow your DP to take turns with you at the hospital?

I hope they offer a side room again if your son’s being disturbed on the ward. He’s had such a serious op, and now given the setback, it’s surely warranted.

If you’re in Bch, im happy to help x