Monday 8th April 2024
My daughter had phoned me on 30th March to say Harry was allowed out of hospital on Easter Sunday for the day once the nurses had been round to check him and give him his medication.
She made a suggestion of bringing Harry over to us, so we could spend sometime together and even possibly go and spend some time together on the beach.
Excellent idea!
Sam and Harry arrived just in time for lunch, unfortunately Harry is still not allowed food, he has to put up with the nutritional shakes which he has now been on for 8+ weeks.
After lunch we had a leisurely walk to the beach, where we played games for a while
I had to have a photo opportunity with everyone in the shot.
Me being me had to attempt a photo with my watch…Well I brought a few laughs, as I lay on the beach trying to get everyone in the frame
Love a bit of craziness every now and then!
Harry was beginning to tire, so we headed off for a treat…The ice-cream van!
Today Harry was allowed an ice lolly, nothing spectacular, just a bog standard fruit ice lolly, boy did he enjoy it!
We sat eating our treats, enjoying the fresh air, watching lots of people flying kites.
Ices enjoyed by all, we make our way back home so Harry can chill…don’t want to overdo things.
Last photo before they set off back to Manchester Children’s Hospital.
Keeping everything crossed for them to be discharged soon🤞
Harry being discharged didn’t go ahead as they would have hoped.
Harry has now been transferred to Airedale Hospital in Yorkshire.
The problem Harry has at the moment is getting his INR blood levels stable.
Harrys condition has not been straight forward because of his heart condition, so Manchester decided to transfer him to the hospital where his heart specialist is based.
The transition didn’t go exactly to plan as Manchester had failed to pass important information, so when it came to medication time, they hadn’t got the correct meds on the ward!
The communication between hospitals has been appalling!
Harry would not have been in this situation if the medical professionals spoke to one another months ago!
Apparently the NHS struggle to find info if you move counties!
It was October 2023 when crohn Disease was flagged up, when Harry was taken to Bournemouth Accident and Emergency Hospital, but the diagnosis from Bournemouth, was not followed up because Harry’s NHS care is in Lancashire!
We understand Harrys condition has been quite complex due to the diagnosis of crohns and his ongoing heart condition, but come on! It’s not rocket science to read Harrys medical notes!
This journey has not been an easy one for Harry or Sam, and is now affecting them both deeply.
One thing I don’t think the NHS take into consideration, is the impact on parent and child when undergoing a long stay in hospital, especially when information is not shared or explained. When medical professionals Do Not talk with one another.
The worst thing ever is to mention that you could possibly be going home tomorrow…Then when tomorrow comes you have all hope taken away!
Too Young for Dementia? 
I agree that dashed hopes are the most difficult thing to deal with. I was in the hospital here in the states just before Christmas, and I kept telling them to just give me the facts, no promises or maybe’s. I luckily had one regular nurse who was very direct and matter-of-fact, and also had a good sense of humor. I have always admired your health care system, which I used during my only trip to the UK many decades ago. I am sorry to hear of its current problems. My best to you and your family!
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Thank you 😊
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