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

I did a formal complaint against my GP and had to write to them.
In my case we went back and forth for years before ‘the penny dropped’ and they realised the problem. They apologised but nothing ever changes. Every bad story starts the same with people having to keep going back time and time again.

Yet another stranger actually in tears, reading your updates.
I'm so happy for you and your family.

I’m so relieved to hear your news. My son had planned brain surgery for epilepsy 3 weeks ago tomorrow. Nothing like your experience but it did feel so odd, on a neurology ward one day, home the next to get on with it.
My son has bounced back incredibly quickly and is 99% recovered - he ran 3 miles yesterday!

Your son will take longer but neuroplasticity is amazing- the brain can reroute itself successfully in most cases. We were warned of potential damage to speech and gross motor - both were fine after a couple of days. Short term memory took a little longer. Take it easy, one day at a time. You all need to recover physically and mentally.

Absolutely thrilled to hear that the tumour was benign and you're home. I appreciate that this is now something you will all live with, and how hard that will be, but goodness, what a relief overall. Best of luck with the healing journey.

Bloody hell OP, I am SO pleased for you! I completely get that your utter relief must be a bit tempered by the results and always having to be watching from now on but I'm so pleased for you all. Give yourself and DH some grace, this is probably (hopefully!) the most stressful thing you'll ever have to go through and you need some time to recover too x

Oh @YourRubyMaker I am so pleased to hear you are both home! I’ve been without internet for a week but have thought of you all often.
Great news that tumour is benign, I know it’s only part of the journey but you have your darling boy home.
Please accept any support or help that is available including counselling. This has been, and will continue to be, a really really tough time - I can’t imagine it tbh - and you have been brilliant. Thank goodness you pushed.
Sending love to you all.
PS I’m sure your toddler will settle to the new routines, they must have missed you both so much.

Wonderful news OP, wishing your little boy a full recovery and hope you get all the support you need and are entitled too xx

Oh my goodness - the post I've been waiting for. Such a relief. I absolutely get that it's still a rocky road to navigate but you sound like such a solid team (apart from toddler being a toddler, bless them) that I have a feeling you'll all smash it - especially your son who sounds like a complete superstar. As you've already mentioned brain surgery is changing by the day and so hopefully in the future he won't need such invasive surgery. In the meantime, Carpe Diem x

Sending love and have been thinking of you. So happy that there is some good news x

Yes I would definitely make a claim against the GP. They have insurance for negligence which is for exactly this kind of thing. If negligence is found you should get a decent pay out which will help your son with all the things he needs as a result of this and also compensate for your lost earnings.

Use a solicitor to do it. You can also complain to the GMC

Just another message to say I'm so pleased to hear it's benign. I've been thinking of you and your family all week. Wishing you all the best for the road ahead, as I know there's still a lot to navigate.

So pleased to hear that it's benign. You have been amazing throughout, and I hope you will give yourself some time and space to process what has been an incredibly traumatic couple of weeks.

Children's brains can be incredible in the way they heal and adapt.

Wishing you all continued love and strength as you continue to navigate this. You are one fantastic mum xx

So happy to hear you are home and it’s come back benign.

Fantastic news!

Am so glad you are home.

@YourRubyMaker That is the best news today!! praying that your son copes well with physio and gets all things as back to normal as they can be! good luck and love to your family xx

So glad you're all home @YourRubyMaker . My DS had a metastasized, malignant brain tumour and although he came out of surgery relatively unscathed, compared to some, he lost all his fine motor skills, couldn't walk and the surgery itself caused long-term brain damage and physical disabilities.

Don't underestimate how fatigued surgery of any sort, let alone brain surgery can make a person. Celebrate early wins e.g. DS sat up for half an hour on his first day home (the rest of the time he needed to lay down), a couple of days later he sat up for an hour. If he can't walk, start with very basic things which work on strength and trying to get his brain/muscles to remember how to do things e.g. when he has the strength, sit upright in a chair and slowly stand up from a seated position, then sit back down in a controlled way (i.e. don't just fall down back into the chair). Build things up slowly by e.g. walking from the bedroom door to the bed, holding onto you. Don't be afraid to ask the hospital for a wheelchair, even if temporarily, if your child needs it.

Help your child do physical exercise in a way that doesn't feel like work, and remember that 'exercise' to someone who's just had brain surgery is very different to exercise for a healthy person. Put a puzzle on the floor and make your child reach for the pieces themselves rather than you handing them to him. This gets them stretching without realising it, their arms moving, the muscles in their back moving etc., and putting the pieces togeher helps improve fine motor skills and the thought process behind seeing 'that piece has a hole in the top so this piece must fit there'.

Do different things to keep the brain engaged and healing e.g. do some reading, some colouring, some watching tv, some playing computer games, some physical activity etc., as they all require different types of physical and mental skills.

Take it one day at a time, or even an hour at a time, if you need to. Wishing you well. x

What a relief OP, I’m so glad to hear this, but what an awful time you’ve had. I hope you have some support now that you’re back at home. Your boy is lucky to have such an amazing mum, but make sure you look after yourself too.

In terms of what your child will be able to do, it depends which consultant you ask. DS's neurosurgeon said he should never do anything like trampolining every again. His neurooncologist said she recommends the opposite, as trampolining (even just standing still and bouncing up and down) is great for improving balance and building core strength.

Obviously, check everything with your own child's Drs, and some things they will need to wait a while before doing, but they should be able to do whatever they want to, within reason. So, yes, they can still:

• go swimming;
• go to an amusement park but personally, I wouldn't let them go on a rollercoaster or, if you do, don't let them go without a Drs (preferably your neurosurgeon's) approval first;
• travel and go on an aeroplane;
• play with their mates
• go to school
• ride a bike etc

I hope you get the support you neec post op from the hospital and GP but if not it may be worth looking at your local children hospice as nowadays they offer a fantastic range of services such as play or art or talking therapy as an outpatient service for your son to help him process what has happened and family counselling etc. They help a range of children but often people think they don't qualify because they have had the "good news" you have had.

The brain injury trust charity may have some good pointers for extra help and support ideas as well - they have a great website.

If you do decide to pursue a claim ( I understand your anger at the one GP and the system) then Thompsons solicitors specialise in med neg and brain injury cases and can give you an honest opinion. When you have had a good sleep try and write down as much as you can remember in case you need it and keep a record of all the extra money you are spending, such as hospital car park charges, extra petrol, special diet, taxis, extra toddler child care etc. You will need this info if you do make a claim at some point - when you have had time to come to terms with the shock of it all.

Finally, hope you were able to cancel the holiday - I was able to get a refund via insurance on the strength of a consultant's letter.

@YourRubyMaker , if it helps, my dd had a benign brain tumour on her brain stem and spinal cord. After the op she was unable to use her left leg and arm, over time this recovered and she had to learn to walk again - she was 18 months so younger than your ds. They were unable remove all the tumour but thankfully it never grew back. We had MRI scans for ten years. She was left with some weakness on her left side and her surgeon said she would never run a marathon. She hasn’t, but did do a 75km hike in the Andes to Machu Pichu and is currently travelling in the far east.
My elder dd struggled after the op, as did we all - you will all need time to heal from this so be gentle on yourselves and take time.
It took a year from when I first noticed symptoms until my dd was diagnosed, no one took me seriously.

I’m so glad it’s benign. And that he’s home. What a superstar you are. You’ve got some wonderful advice already, none of which I can add to, but we’ll all be still here when and if you need us on this journey x

YourRubyMaker, you’re one brave, strong and determined woman and mother. I salute you 🫡. You never stopped fighting.

And your son clearly takes after you ❤️

This is the best news! You’re home and it’s benign!! I’ve been sending good vibes every day. You’re right: medical and surgical advances are happening all the time, so there may be improved ways of dealing with it in the long term.

You’ve all had months of anxiety and then a couple of weeks of serious trauma. Go very easy on yourselves. Don’t be alarmed if any of you have wobbles or really tough days. It’s natural. Ask everyone you trust for as much help as possible. I’m sure lots of people (school parents, neighbours, workmates, local friends) would love to support you by dropping off meals and shopping, watching the DC for a couple of hours at home while you have a lie down in bed or taking you each out for healthy lunch while the other is at home. Could a family member stay for a few days to help look after you all?

Agree therapy for you all is very important to help process and let everything out in a safe and professional space. Ask your son’s school, who may be able to arrange it for free. Or your GP could request an urgent referral (least they can do, given their failure to take you seriously led to stress over a prolonged period). Over 5 years later, I realise how traumatised I still am from spending two weeks in hospital with my son before and after a life-saving op.

And once you’ve settled into a routine, if you have a birthday coming up, suggest you ask for vouchers for treatments for yourself: massage, pedicure etc. Anything to pamper you in a calm environment. Gentle yoga classes may also help you carve out a little, calming time for yourself later down the line. Yoga’s so good for anxiety. You deserve a stay at a health spa!

Finally, isn’t our NHS wonderful at times like these! Amazing surgeons and medical teams. Can’t imagine how much your son’s op would’ve cost if you’d been required to pay. I hope everyone who’s followed your thread wants to defend it and see more of our taxes going into it. After COVID, NHS staff (from consultants to porters) should have a big pay rise and less stressful working conditions. Facilities and support, for patients and relatives, certainly need much more resource.

Sending strength and love to you all as you recover at home xx

Oh gosh. I'm so relieved. Yet also very aware that this is just the beginning of a complicated road for you all.

I'd also consider making a complaint, or at least ask for an explanation for the delay.

Different situation and outcome, but I lost my husband due to a GP misdiagnosing something that, in hindsight, was really obvious. We didn't complain because the only way to cope with the journey we were on, was to shut the misdiagnosis out, and focus on where we were. We didn't have the headspace for anything else.
Our MacMillan nurse did report back from a multi-disciplinary meeting where assistant the lead GP in the practice said "we let this man down badly" though. So at least I know that it was recognised and maybe wouldn't happen again.

But in your situation, yes, I'd want an explanation.

What a terrifying time for you all. Be good to yourselves.

So glad you are back home. In terms of whether it grows back and future complications it's just pointless thinking about it at the moment take it as it comes and you will deal with it like a champ again. I hope your son if feeling more comfortable