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

Thinking of you and your son. I really hope they move you to a quieter bay or give you a room. You and your son should not have to endure all that noise and disruption. Outrageous . Xx

Another been thinking of you and your dear son. Hope things start to improve, and you get moved to a better quieter ward or room.
it must be so hard.
I would swap with your husband, I know you said that your toddler wouldn’t leave your husband’s side. But it’s important, for you to have that break and I’m sure, after the initial response from your toddler, they would be fine. Sending strength and hope that our best wishes and hope are answered. 🌺😘

Hey. Sending love to you.

Just wanted to say that when I was pregnant with my second daughter I was in hospital for 3 months of it and my then 3 year old also acted differently and distant with me, it was really upsetting but she was just confused by the situation and clinging onto her dad was her normality at that time. It was only temporary xx

@YourRubyMaker
Keep asking if there's a quieter room for you and your son. It seems crazy you are in a shared room with children bouncing around just having tonsils out.

You both deserve more peace and quiet.

If the hospital doesn't have a children's neuro ward, I imagine he has just gone to a general surgical ward which will have children on it who have had minor and major surgeries but they will be used to having children who have come from ICU or at least the surgical ward my son was on was used to it.

Side rooms are limited and on the surgical ward my son was on, was only for children who needed to be isolated as they were infectious and had picked something up in hospital.

Might be worth contacting https://www.sophieslegacy.co.uk/ a fantastic organisation set up by a mother who spent a huge amount of time of time in hospital with her daughter Sophie and now support parents and children in the same situation . Perhaps they are involved at your hospital.

Thinking of you OP. You must be utterly exhausted and probably feeling totally wired all at once.

If he’s on the general ward then they must think he’s strong enough to be there which is great news but you must swap with your husband once you’re in the room with your toddler he will settle Tonight You will be sleeping in the Ronald McDonald house I really hope.

It sounds like he's on a surgical ward which is different from a general ward. My son moved to a surgical ward from intensive care too. I also witnessed children/babies move from intensive care to surgical wards very quickly after having major surgery including heart surgery.

Obviously it could be made up but as someone who has had a child in hospital, including intensive care and not our local hospital. 3 and 4 aren't unbelievable to me.

Op your toddler will get used to it if you swap with your DH for a while. Could your DH take your toddler to stay with your parents for a few days?

Managed to swap and get for a couple of hrs today with toddler and get some washing etc done ,. Absolutely fine so will swap next week for a few nights as they’ve gone home for a couple of nights now to check the house and get stuff done etc , I’m well and truly done with hospital and most of the people in it now tho 😂😂 but was good to get out for a bit , feel like every day brings some kind of scare or drama but suppose that goes hand in hand with this kind of surgery , praying for good news with the biopsy Monday 🤞🏼🤞🏼

Congratulations on getting some time out. Sounds like you’ve got a plan. Hope you’re able to enjoy some of the sunny weather, we’re having.

That's great you've got a plan, you NEED a break so you can be who you need to be when you're with your boy. You're honestly in my head and heart all the time. So many of us willing you on❤️. What an incredible mother you are being, so strong for your boy. Sending love

Thinking of you, especially for good results on Monday. Hang in there. x

It must be so awful waiting for his results. Have they given an indication into their thoughts?

My lovely friend was diagnosed with a brain tumor via an A&E admission and told her staging and what it was likely to be all very quickly.

Thinking of you OP. Fingers crossed you receive good news on Monday.

No they didn’t give a staging or what they think it is at all , they don’t ever really talk about things until they happen I suppose to not cause worry , the surgeon said to me before the op there is so many different kinds of tumours that it’s not worth speculating about until we know ,. Not sure if that’s a indicator in itself or not

I know I don't know you, but just wanted to send lots of love and hope for you, your son and your family xx

I’ve found this with drs, my son had meningitis afew years ago, i remember all my questions were met with let’s cross that bridge if we get to it, we don’t think so, let’s discuss that next week, etc, they don’t want you to worry abit something that may not be the case, and they don’t want you spending your evenings running down rabbit holes on google. It’s hard, really hard because you want to soak up as much information as you can. And one day at a time is hard, you want to know what’s coming and plan. But they are doing it to protect you. Drs would tell me he was having an emergency scan, afterwards told me they thought he had cerebral palsy but it was clear, they don’t don’t want to worry you unnecessarily. Sending you love

You can push against that if you like to have some idea. They should have some idea at this point.

I pushed with my son and they were able to tell me that they believed it was cancer, the staging and also the type of cancer and they were correct.

I agree with this. You may not want to know but they will certainly have a good idea of what it is or isn’t by now. Good luck x

I think until they get the histology and see what kind of tumour it is then have their MDT meeting they won't say much. The MDT meetings are quite something with lots of discussions and opinions. It really is a meeting of minds for the best outcome for your son.
I feel for you and wish you well

I don’t want to guess or anything until it’s facts but I really do feel stressed about it , think it’s been such a hectic week I’ve not had a chance to think but now it’s the weekend I’m just surrounded by thoughts , the swelling also hasn’t improved so that’s adding to my stress