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

You never need to feel the need to apologise to people here for not updating. Use MN as a resource for when you have the time and when you can benefit from communicating here.

That's brilliant that you are out of ICU and that your DS has been able to have some time off the ward using the wheelchair. I think it's so valuable to have a change of scenery when you can.

I can only start to imagine everything you've been through. I'll echo my message on my first thread. Do what you can to look after yourself a bit. Ask friends to help. I had close friends/family come and sit with DD so I could get away for a bit. I'd thought DD would miss me but she enjoyed fresh company too at times. I know it's really hard to peel yourself away though.

Sending all the positivity possible in your direction. Keep plodding on 💐

So sorry to read that you are still having a really difficult time, OP. I hope that things start to pick up for your DS, for you and your family. Fingers crossed for the biopsy results. 💐

OP you're amazing and I wish your son a full recovery. Hopefully the worst is now behind you x

I don’t have anyone to come sit with him as my parents don’t drive and we’re really far . We live 100 miles fr them anyway and this is 100 miles from our house and there’s ,I’m just stuck I can’t even go to the shops cos I don’t trust the nurses to be there quick enough there’s too many kids

Dear YourRubyMaker, I have been thinking of you, your son and family every day. You are strong, you are because you have to be. When in hell keep putting one foot in front of the other. Your darling boy will improve day by day and week by week. You are all on a tough and difficult road but keep walking, keep going. Sending you and your beloved boy my very best wishes.

Oh OP 😞 I'm sure this is unhelpful advice but any way you could order deliveries to the hospital?

I’ve been thinking of you and your son OP. Glad to hear your son is out of surgery. Hoping for good news for you soon - I can’t imagine how hard things are for you at the moment 💕

So pleased to hear that you are back on the ward-hopefully it willbe a lot quieter than before! x

@YourRubyMaker

I've been thinking of you and your family all week.

I remember a thread a while ago where a mumsnetter was in hospital with her really poorly child and a couple of mumsnetters that lived nearby came to the rescue and helped to take washing and bring food and things in the mum and dc needed.

Would that be something you would consider?

If you're in my area I'd be more than happy to help in any way that I possibly can and I'm sure I won't be the only one here to offer.

Accept some help if anyone is nearby op

We are all here rooting for you x

So waiting for a emergency ct scan and nil by mouth incase he needs an emergency op after 😭 I literally feel like I can’t take it anymore , his heads really swollen today and he’s started seeing things

Would your parents travel on public transport and stay in a hotel? If this was my daughter and grandson I’d be there like a shot.

I second the PP’s idea - if you’re willing to say which hospital you’re in, there may well be a MNer nearby who can help. I definitely would if you were near me (nearest big hospital to me is the JR, Oxford).

You have been in the thoughts of many over the last few days and will continue to be so. I’m sorry that the post operative recovery has been traumatic for you, can only imagine the pressure you’re under. Will keep everything crossed for both today’s scan and the biopsy results.

Congratulations on getting through the last few days, and I'm sorry that things are rough. Brain surgery is really really tough 😢

His team will be very experienced at dealing with post op complications, and if he goes in for more surgery you'll get through that too. When you're home again you'll wonder how the hell you coped.

If you able to have a room at Ronald McDonald throughout your stay that might be sensible, teaching it in turns to look after your toddler, bring the other person food, swap to wash, nap, do laundry etc. We stayed in ours for a couple of months and I'm not sure how we'd have managed otherwise. We were even able to bring our daughter from the ward to the room a few times to have a bit of normality, when the situation allowed.

Do you know when the biopsy results are due back?

Thank you for coming back to update us. I hope things calm down soon x

Hi op. So lovely to hear from you! Do you
feel
comfortable sharing where you are in the uk? I may have some charities to help (I used to be a specialist paediatric oncology nurse)
are you on a general ward or specialised ward?

Just wanted to send you a big hug, I've been thinking about you both and I really hope things start to get easier soon. I spent a lot of time in hospital with my dd and it's so stressful and frustrating. You will get through it.

We’re just on a children’s ward which I’m also struggling with cos I’ve got kids here that are having the bloody tonsils out and the parents just don’t care about the behaviour and are are loud all night and it’s starting to enrage me if I’m honest cos I don’t think people understand how hard it is for him and me and we’re not like them , I know this is because of the situation but it’s how I feel atm , it’s been 8 days and I’m just done , so my partner is staying at Ronald McDonald with the toddler and the plan was to swap but toddler literally won’t leave dh side gone really funny with me and can’t be on the ward more than 10 mins cos he’s a menace even after going to the park or whatever for a hour before

It sounds like such an impossible situation. I have no advice I'm afraid but do take all the help that's offered. If there are people here who are near you and are offering to help do let them, even if it is only to do a load of washing or bring you some food.

I can't believe that you are expected to share a room with others who are up and doing when your poor boy is so ill. You are such a warrior. He couldn't have a better mum than you.

Can your husband bringing you food at least?

I'm surprised you are on a regular kids ward and can see why that would be frustrating. Having other parents who are going through a similar level of hell can be a help.

How is your son in himself? It's a very hard age to go through this, it must be very difficult for him, and for you to be a strong support.

Thinking of you OP. This sounds impossibly hard. Sending love and strength and seconding that I'm sure lots of people on here would be more than willing to give any practical help you need if you felt comfortable with that xx

Thinking of you all

I'm so so sorry and sad you're going through such hell just now. It's beyond imagining unless it happens to you. Sending you both such love. There are no words for this OP, I'm so sorry xx

Oh my, I simply can’t imagine the turmoil you are enduring right now, all of you. It is absolutely beyond comprehension until you are there in it.

You absolutely will get through this; battered and bruised no doubt, but you will. Just keep going, as best you can.

The toddler situation is another layer of stress I know, but totally understandable under the circumstances; their little world is also not as it was before so they will be clingy, but they will be fine. It’s ok.

Hard to do, but keep reminding yourself that you are in absolutely the best place you can be right now. The team around your son will be doing everything they can to fix this for you. Trust them, and if you need to get five minutes away from the ward, know that they will be taking the very best care of him.

Look after yourself, and your DH too; to help everyone else, you need to be as well as you can be. Nap when you can, eat as well as you can, go for a bit of a walk in the fresh air. Hour by hour, step by step. You can do this, you’re going to be ok.

Hand holds and courage being sent from one mum to another.

I've been through this, though minus the toddler. In all honesty, I would encourage you to take a break from being the one at hospital and swap with your husband even if it's for a night. You must be wiped out from stress and exhaustion. I'm so sorry you're going through this.

Thinking of you all OP. I’m sorry if it’s so busy that you can’t get a quieter room. Would it help if you could do shorter swaps with your DH to reassure your toddler and spend some time with them, and to give you a change of scenery? Or when things are quieter can you step outside for a few minutes and get some air on your own. Hospitals can be very all encompassing/overwhelming.

Thank you for updating us. I’m sorry things are so difficult right now. Could you take your toddler to the park for a couple of hours? Hopefully that would distract them from dad not being there and would give you some fresh air.
I echo those who offer to help if you are nearby.
Stay strong x