First time in hospital for craig

[Unicorn2022]

Craig was taken into hospital on Wednesday last week with pneumonia. He is nil by mouth and has had 3 NG feed tubes fitted and pulled all 3 out and now on his 4th. I “slept” in the chair last night making sure this one stays in. Too poorly for a PEG but looking at other options. Pallative nurse came to see us who kept calling him Clive, so I asked her as she was delivering such devastating news was she sure she had the right person. I am being told different things by different teams and being drip feed information to come to my own conclusion. I have asked questions where the answer can only be yes or no and still they manage to avoid answering me. Let’s see what today brings ☹️

[Helen119]

Love and hugs to you, hope you get some answers today xxx

[kenh1]

My wife was in a similar situation too ill for a peg they fitted an ng tube through her nose with an attachment internally under the bridge of her nose to prevent it being pulled out. That was in 2016 she continued to be fed by tube up to her death last month. But unlike your husband she never attempted to pull it out, she was a model patient and very stoical in her acceptance of her condition which made life easy for the nurses and carers including myself. My prayers are for you at this difficult time. Ken.

[SewBears]

Best of luck for you and Craig today. I know all to well about uncomfortable chairs at the hospital and trying to sleep with one eye open at all times throughout the night. You poor dear, I hope you can sneak a nap in today. The least the staff could do is get his name right for Pete’s sake!

Sending hugs Xoxo

[Unicorn2022 in reply to SewBears]

Thank you. I am not sleeping there tonight so fingers crossed he knows that he can’t pull this one out. They did offer me a bed but I would not have been able to see what he was doing lol xx

[Dadshelper]

Ask the doctor if a PICC line would be of help. Dad had one for a few days after bowel surgery when he couldn't keep food down because the bowel "didn't wake up". It's not the best way to get nutrients but least he'll have some and that will help him get stronger.

Ron

[Yvonneandgeorge]

Thinking about you, sending you much love and prayers, also a massive hug xxxxx

[Katiebow]

Awful situation, I was lucky in that Ben had recorded that he didn't want to be hospitalised to be be kept going and so I never had to face your situation. It was hard not to call the ambulance and get him admitted for treatment but his GP helped in every way she could to keep him comfortable at home.

Sending a big hug and hope you can get more honest answers to your questions in the future, don't think lots of medical staff are well trained in that skill.

Kate xx

[Hiking13]

I am sorry I didn’t reply sooner I have only just seen this you poor things it is so hard being in hospital. Steve also pulled tubes out constantly, he even rolled the whole lot up one day in Critical Care and hid it all under his blanket and point blank refused to let anyone see what was under the blanket until I got there. It took me a long time to get him to show me what he was hiding - there was tons of stuff under there - you have to laugh and wonder what goes through their minds. I hope Craig is improving and that they have the pneumonia under control. Take care of yourself too as hospital is exhausting - which one is he in? Thinking of you and sending you hugs

Love Sarahxxx

[Unicorn2022 in reply to Hiking13]

They are not attempting the tube again so therefore no RIG or anything else. They are stopping blood tests - blood tests were for checking electrolytes for re introduced feeding. It will be feed at risk at home, palliative nurse will be coming again today to discuss. It’s unlikely they will be letting him out before the weekend but possibly early next week once the care package is in place. They will continue to treat him with antibiotics and get him as “well” as they can before he comes home. He is in Heartlands xxx

[Hiking13 in reply to Unicorn2022]

Really push for the care package as ours was a nightmare to sort out, have you been assessed for continuing healthcare at home? That’s how I got 24 hour care in place for Steve but I had to really push to get it all through. There is a really good consultant in the QE who understands PSP without him I would never have got Steve home. Take good care of yourself too as this is hard and if there is anything I can do to help just ask as I really do understand what you are going through. Xxx

[Unicorn2022 in reply to Hiking13]

Thanks Sarah. The palliative nurse is coming tomorrow. Not sure how it works for the 24 hour care but I believe they will be coming 4 times a day. I have all the equipment do the bed will be coming downstairs tomorrow and I will be making it as bedroom like as I can xx

[Hiking13 in reply to Unicorn2022]

I really feel for you take care of yourself too because it’s so hard - you are doing an amazing job and hopefully we can meet up sometime xxx

[doglington]

I know how devastating this stage feels.

It's also been such a quick journey for you - and he is so young. My heart goes out to you. Big hug from Jean x xx

[Unicorn2022 in reply to doglington]

I feel like Craig has been text book PSP, everything you can have he has, mobility, sight,swallowing,incontinence, unable to speak and so quickly. We will do our best to make sure however long he is now with is is filled with love and smiles and laughter xxx

[doglington in reply to Unicorn2022]

It gives me a lot of comfort to remember that I did that with Chris.

Every time anyone here reminded me I went and gave him an extra kiss.

It's the most important thing you can do.

I had excellent palliative care at home from the hospice team. Very skilled nurses.

love from Jean x