Unrelated Kidney stone diagnosis after starting PEG feeds

[Guest]

Hi all,
Just wanted to update in case anyone read about the start of my husband Richards PEG feed and issues he was having and are starting themselves, didn't want anyone to worry unduly about their starting feed.

On Thursday after starting feed through his PEG for the first time on Monday, Richard has been taken to hospital.
He was experiencing tummy discomfort and pain in his right side. The doctor was called out on the Wednesday morning and thought it was a urinary infection, We started antibiotics but Thursday during the day it was getting worse. I called out the doctor again and on Thursday evening he was taken to hospital.

Yesterday we were told after scans it was a kidney stone that was passing and possible infection caused by this, also a slight chest infection. The ward he is on is getting his PEG looked at to make sure nothing wrong there, but think this was all coincidence that this has occurred just as we start the feed through PEG.

Today I hope we will find out more and maybe Richard will be transferred to a more appropriate ward. Where he is at the moment knows little about MND and the difficulties of movement and speech and are busy treating everyone else to be able to give immediate attention when required i.e. lifting out of bed for commode or helping clear mucus from throat, they are all very kind but overstretched.

best wishes to all Amanda

[shrew]

Sorry to hear this. Hope hes well soon x

[Dis1960]

Hope Richard gets better from this soon - as you say it’s probably a coincidence it happened so soon after the PEG feeding

[Ellie]

Hi Amanda,

Sorry to hear about Richard's kidney stone and hospital admission.

Thanks for the update, it highlights that we have an increased risk of developing kidney stones.

They take a long time to form, but not getting enough fluids, as well as being bedbound, are 2 risk factors for developing kidney stones, something we need to be aware of. (I'm not saying this is the reason for Richard's)

Hope his hospital stay is brief and he gets good and appropriate care - involve the hospital's Patient Liason Service if you feel his MND needs aren't being met...

Love Ellie.

[Kayleigh]

Hi Amanda,

Sorry to hear about Richard being so unwell. I hope he feels better soon.

I hope it won't be long before he is moved to another ward where, hopefully, he will receive a better standard of care from nursing staff.

I hope you are OK and that you are getting enough time to rest and sleep.

Love and best wishes to you and Richard,

Kayleigh x

[Deb]

Hi Amanda,

Sorry that Richard is poorly. I really hope he feels better soon and that he is moved to a more appropriate ward.

Take care of yourself,
Love Debbie x

[Terry]

Hi Amanda,

Sorry to hear about Richard's troubles. Most hospitals can not provide appropriate care for us and the care would probably be much better in a hospice. They are normally used to Mnd and the problems.

Hope he is soon home.

Love Terry

[Guest]

Hi all, thanks for your replies and good wishes x

Richard has now been moved to a urology ward and is in a side room rather than a bay. This is quieter for him and the difficulty in speaking doesn't become an issue where other patients aren't aware of his condition. He is more comfortable and on pain killers and antibiotics. Also now has a catheter which he doesn't mind and therefore he hasn`t got the issue of needing help to the commode too often.

He is now having his feed through the PEG as they are satisfied that all is well there thank goodness. Still nil by mouth though as they are waiting for speech therapist to check swallow is safe. It was safe before this happened just getting more difficult, but he was having drinks with thickener and soft diet. I think they just want to make sure by the relevant specialists first.

His lovely respiratory nurse and consultant went in today it was good for him to see familiar faces. Also his palliative care consultant.
I emailed the mnd nurse coordinator who let the relevant people know Richard was in hospital and so that has been good in getting them to visit him.
His lung function has deteriorated a bit so he is on the bibap machine, which has been adjusted, a bit more.

I didn't know Ellie, that mnd patients were more prone to kidney stones, so good to make people aware that it is a possibility.

I will let you all know how things are going

love Amanda x

[shrew]

I do hope that Richard is fully recovered and home soon xx

[Ellie]

Hi Amanda,

I hope Richard is continuing to improve and you're getting some rest.

Love Ellie.

[Guest]

Thanks Ellie,
He has definitely improved in that he is not in pain anymore and infection is under control thankfully.
He has been nil by mouth since Thursday last week when he was taken into hospital. They were very concerned about his swallow and organised a videoscopy which was done today. It didn't go too well according to Richard but we have not been given the results officially yet.
There is talk of him potentially coming home tomorrow as the medical crisis is sorted and his respiratory machine adjusted to make sure when he uses it it is correct for him. It caught me a bit by surprise when they said today that he may come home as up to this point it has just been me on my own sorting things. They are sorting carers which I understand will be sorted for when he comes home but it all seems a bit quick to do that, but we will see.
It will be good for him to be home and we will find our way I am sure,
Love Amanda

[Ellie]

Amanda, it's great to hear that the hospital was proactive in treating Richard - too often they are ignorant of MND.

Although it'll be a blow for Richard if the videofluroscopy confirms it's not safe to eat and/or drink orally, he has the feeding tube and can get all his needs through it.

It may be hard for him to accept or, based on the videofluroscopy tests, which I hope he got to see - if anything went down the "wrong way" (aspirate) he'd see it happening on the screen - it actually may be a bit of relief that he won't have to struggle swallowing any longer (probably a bit of both!)

Aspiration can lead to pneumonia. Frequent pneumonia or a bad case of it can prove fatal to us.

And it's good that the BiPAP levels were looked at and adjusted to suit Richard's breathing.

The swallow and BiPAP settings can be reassessed once he's well over the infection and getting enough calories and hydration to see if things have changed.

As for carers, grab every minute he is granted and see how it goes!

Hope he comes home to you today or as soon as things are in place.

Love Ellie.