Need a handhold - son in hospital

[HaudYerWheeshtYaWeeBellend]

Took him to A&E yesterday as he fell at the gym and we thought he had broken his wrist (thankfully just a sprain) however during their examinations they were worried about his circulation as his hands and lower arms were going blue and were cold to the touch, they advised we needed to make an appointment with his GP for further investigation.

Managed to get a GP appointment for 3pm today as the hospital suspect he could possibly have Raynaud's syndrome/disease

GP took his blood pressure and it was 177/127 , they thought the machine was faulty so got a another one and it was the same.

We had to take him straight to A&E, they’ve been trying to get bloods for the last 6 hrs but his veins keep collapsing and are unable to obtain his bloods, 2 doctors and 3 nurses have all tried with all sorts of needle sizes/cannulas etc… even with a vein scan machine, he’s been poked and prodded more times than we an count,

They’ve done a serious of tests, ECG, blood pressure cuffs on his arms and lower legs every 60 mins.

His only symptoms are some slight dizziness and some blurred vision, because of this they carried out a test where they turned the lights off and shown a torch in his eye… however the drs body language changed, she went and got her senior doctor to look and they redone the test.

We were then told to wait in the room as they needed to speak to a more senior doctor.

We were then put into a room, nurse came in about 45 mins later and advised he was being admitted, we asked why and she said has no one told you anything and we said no.

Doctor has come in and said DS is being transferred to another hospital, either tonight or tomorrow morning, he needs to see an specialist eye doctor , he also needs a urgent CT scan, possibly MRI and a heart scan as his ECG has shown some concerns and did we know he had a heart murmur.

They also need to get his bloods urgently somehow.

I’m not naive, I know what they are suspecting, I just need to be positive and hopefully the scans show nothing.

Is he on any IVs or anything at the moment? If his obs are staying stable, would make sense if they would let you go home to get a decent night's sleep before further tests tomorrow.

How does he feel about missing his exams?

Don't do this OP. You need to stay in until he's had all the tests. If you're not there they may be delayed and moving him back and forth may raise his BP again. If you're exhausted, take it in turns to sleep there/at home with your DH, but your DS needs to stay in until they've got to the bottom of what is going on with him. It's hell staying on a ward, I know, I had to do it for 12 days straight once. I ended up so exhausted that I could sleep with all the commotion going on after a few nights, but in the meantime, get earplugs (Soundbloc https://www.amazon.co.uk/dp/B07T2FGMMY?ref=nb_sb_ss_w_as-reorder_k0_1_10&amp=&crid=2QVNFR9L054N8&sprefix=sound%2Bbloc&th=1 are the best ones IMO) and a silk eye mask.

If they are concerned enough to keep him
in over the weekend with very regular observations, I think you should stay put. Hours pass slowly in hospital at the time but better safe than sorry

Agree that its wiser to stay in. Earplugs and eye masks work wonders for sleeping in hospitals.

We went in on a Sunday, had very high Troponin levels (showing heart damage - we were told 'too young for a heart attack' but the notes showed later they thought it was) & left on a trolley until Cardiologist arrived 10am Monday. OP in your shoes I'd leave him in. I know it's really hard but if he suddenly worsens you are already there. Best wishes x

I would stay where you are for the moment. He’s in the best place. Hope you get answers soon and get to go home.

Glad to hear his eyes are clear.

DD was allowed out for four hours between obs after she'd been in a week, had had brain and heart cleared, and her bp was in the 150s.

Prior to that she'd been on hourly doppler/manual bp and the furthest she could go was the hospital garden.

If they are monitoring him on 60 min obs they won't let him home.

Stay where you are for now until you get the tests. While you're there they've got the incentive to find out what's wrong.

I agree with the others. I stayed in hospital with my son for 10 months and it isn't pleasant because getting rest on a children's ward is incredibly difficult but as an inpatient, he'll be on a different list for tests etc if it works the same as it did at the hospital my son was at.

Stay put. Its a nightmare being on the wards, especially at the weekends. But it will be a whole different experience on Monday.

Will they let you both go for a walk round the hospital? Have a stroll and get a break from the noise.

It feels absolutely pointless, especially to him, being on a ward when they aren't doing any tests and your child seems stable. They will be reluctant to discharge as his blood pressure might increase again or he might deteriorate. They still dont know why his BP was so high and his circulation poor, and they still don't know the cause and effect of his heart murmur (harsh is something that needs to be checked out as you probably know). If he stays in one more night, they can do more checks tomorrow, keep monitoring him. You can have a proper conversation about going home with the proper consultants tomorrow not the weekend lot!

So please about his eye test results. Please stayin hospital until they decide it us time to go. Things can change in an instance. New symptoms can arise and he could ignore them. The observations athough intrusive really important.

When my DD was in hospital , just turned 17, they put her in an adult ward. I stayed with her as she has learning difficulties.

Her symptoms who altered or temp etc would shoot back up again. In all we were in for 20 days. It was over Christmas and NY one year but we were in the safest place. Consultants got called out to see her over the entire period.
After being released from ICU (5 nights) we were put on a children's ward which was much easier. The nursing staff had more empathy.
The NHS were amazing.

Wishing him a full and speedy recovery. Take care of yourself too. Gentle hugs.

I think OP and her son are in a side room. Not sure if sharing with others.

I was taken in to a new hospital after an accident, with mostly single occupant rooms. There was also a small corridor leading from my door to the main body of the hospital. I couldn't hear a thing until staff were at my door.
I was told that was the model for any new hospital built.
Then Covid struck.

I don't think going home is possible. You would then be an outpatient.
Appointments, some twice in one day. Travelling, waiting.
Honestly, I wouldn't even ask.
Rather, now you know the problems, you can prepare for them.

As everyone else has said....grit your teeth and say put
By far the best thing to do

Hospitals do allow home leave, including overnight, in certain circumstances. They don't discharge so still an inpatient, and you generally need to live close to the hospital in case you need to come back quickly.

Dd was allowed an overnight when she'd been in ten days - the doctor agreed it would be good for her, we came home after last meds and obs at 9pm, and had to be back by 8am for first meds and obs before morning rounds. We live five minutes drive away.

My child - much much younger - was allowed on home leave last year whilst waiting on MRIs and lumber punctures - it was helpful for me as a single parent I also had other young children at home with no support. The hospital was very supportive of home leave - one less to monitor over night I suppose. We had to be back in every morning for rounds and then would stay all day whilst they did tests and monitoring etc. I was surprised it was allowed given her symptoms (lower limb paralysis)

no harm in asking about home leave but very much depends if his observations suggest stable blood pressure etc - if it’s too high/low they definitely won’t allow it

What sort of OBS regime is he on at the moment? The frequency of that will help indicate whether they'd think home leave was appropriate.

I think personally he's best staying put whilst awaiting tests. There are obviously things they are concerned about or he wouldn't be there.

I send you a hug. One of my sons developed Type 1 diabetes at 7. It was very scary but we learned to manage it.

Then as soon as the first signs of puberty hit his diabetes became incredibly unstable. I estimate he went into hospital in an ambulance roughly every 2 months from 11 to 17. He would get acutely ill. It was awful. Frightening for both of us.

So I know your fear and deeply sympathise.

My story had a happy ending. My son got an insulin pump and a blood sugar implant. It changed everything. He hasn't needed a hospital admission since. He's a grown man now and had the best control in the clinic.

I would absolutely echo this.... your son needs to be within a hospital setting until they have isolated the problem. Do not take the risk of taking him home and something very very serious happens. Sadly I am someone who has had serious family illness drop on them from a great height. Keep in hospital where he is safe.

I agree.

My son was only allowed home leave when they were doing his obs every 8 hours and he was very close to discharge anyway, it was also Christmas day.

I might also add, your son is medically classed as a "Minor", they may inform the Hospital Social Services Department if you push to remove him. If a child is triaged at Accident and Emergency and then the parent removes them "fed up of waiting" etc then the Hospital Social Workers are informed of this. I work at a GP Surgery and have come across this before.

Thank goodness you got him seen!! Sounds like he is good hands and being taken seriously. Which is the most important thing. Hugs and hand hold.

I’ve got sympathy with the sleep deprivation of regular obs. Only time I’ve been in that situation was after a post partum haemorrhage and I really just wanted everyone to bugger off and leave me alone and it was sending me into a bit of delirium being prodded every hour. I didn’t really understand why they were coming in so frequently until a couple of days later when someone mentioned I’d lost a lot of blood and had been quite unwell. If they’re still wanting hourly I can’t see them letting him home quite yet. As much as it’ll be driving him and you bonkers, he’ll be safer there if something deteriorates. It’s good news though that blood pressure has come down though and no problems with eyes so hopefully something good to latch onto.

Same!

I remember on night 1 being so frustrated at 2hrly neuro OBS (which require waking the patient), why were we even there? I should have gone home and brought her back in the morning etc.

By night 2 she was in a different hospital awaiting life saving enormous surgery (happened the following morning). They had declined my offer of driving her to the specialist hospital and they blue lighted her instead
because it was so risky for her to be out of hospital.

It's likely nothing as serious here, but he's being kept in for good reason, and sometimes it's obvious in hindsight you'll be relieved for that. Best case scenario is that he'll be a bit bored. Equally, him staying put could save his life. Be guided by the doctors.