Alfie Evans

[IcySlippy]

www.liverpoolecho.co.uk/news/liverpool-news/alfie-evans-parents-plead-sons-14231597

Anyone following this?

there's a new photo now showing the inside of Alfies bottom lip. I would imagine the constant seizures may cause him to bite his lips, or being ventilated causes extreme dryness. This child cannot eat or drink orally so his mouth will be affected.
I know how if feels to have parents watching and questioning your every move, when all you're trying to do is care for their sick child.
I agree it must extremely tense in that room

My son has been in PICU 5 times this winter, ventilated (due to respiratory infections which he can't cope with due to chronic lung disease). One on occasion he got an awful pressure sore on one of his ears due to being lain prone (on his front). I was upset about the ear as it was very angry and painful looking during healing- plastics team has to come review it daily to assess whether ear was regaining shape etc. BUT in spite of being upset about the ear the bigger picture,which was more important to me, was that, thanks to the dedication of staff, my son was still alive! Not for a moment did I think that the injury arose due to lack of care for him- it is just, as previous posters have said, a risk associated with the sort of intensive care he was receiving.

The snot bubbles / secretions coming out of the nose - have had that too. It doesn't look nice but you can't hover over a patient with a suction catheter 24/7 to hoover them up the second they appear. In addition to which, suction is invasive and distressing, so you have to balance the frequency of doing it against the condition / clinical status of the patient.

I agree those pictures don’t look great but when you only have one side of the story you can’t really judge. The cries of ‘call the police’ and ‘the papers’ is just hysterical. It has been said a few times that Alfie has seizures on touch, it may be that he had had a bad day that day so they didn’t want to trigger another seizure by suctioning him. The secretions don’t look great but are not harmful.

You can tell Dad is getting more and more frantic by the hour. It's so so sad that he hasn't got someone telling him to stop now. Those photos show the perfectly normal reactions of a child needing a huge amount of medical support and given that the Judge ruled that Alfie needed dignity and privacy, he's going too far over the line now

But surely given the publicity, the staff would be extra careful. The pictures are horrible but I'm not an expert.

some of the comments on the fb page are absolutely awful (in fact most of them are) one saying 'you should smack the nurses' and calling them **nts
I'm gobsmacked

derxa those pictures are all old. I agree they don’t look great but all explainable by means other than the nurses are evil and neglectful.

I agree the Dad seems almost desperate now, as soon as the comments slow down he posts something else almost to keep the attention going

One of them looks like a bed sore, i.e. a graze caused by lying in the same position for too long. Sadly, on an unhealthy person, they take much longer to heal.

It must be so hard for all the dedicated staff to tend to Alfie knowing that everything they are doing is being filmed or commented on by his family, the family should be grateful that they are still willing to care and treat their son, after all, they have been doing this for such a long time now. Lots of staff in different jobs down tools when the going gets tough or they feel harassed, these people wouldn't dream of it and shouldn't have to be subjected to the vitriol that has been aimed at them. They must dread going into work, the trauma of losing any child you have been caring for must be horrendous, when you have worked so hard to keep a child alive to be accused of abusing or maltreating him must hurt so much, I admire them so much for all they do, and for not turning around and telling the family where to go, they are better people than I will ever be! Such a sad and sorry situation for all concerned.

I agree the Dad seems almost desperate now, as soon as the comments slow down he posts something else almost to keep the attention going But he is desperate. I would be too. I would never rest.

Are nurses / Doctors allowed to refuse to treat certain patients if they're worried about potential accusations? I'm sorry, but I wouldn't want to have to deal with those parents and the problems they're bringing.

Dexra surely not to the detriment of the teams of people caring for the poor child though no matter what? There have been so many heartbreaking posts on here about parents faced with similar situations who have faced the inevitable outcome with dignity and fortitude - it doesn't have to be like this.

Agree that TE is stepping way over the line now.

I've just donated to Alder Hey and sent a message of support, thinking of all the other patients there at the moment too, I know there were a couple of other posters on the deleted thread who had children in there last week and really hope everyone is ok.

TE says on the FB feed that they've not shared these photos before outside of court so presumably in the court discussions Alder Hay were able to explain to Judge's satisfaction that they were not signs of systemic neglect in care? I would have thought that if the Judges felt any concerns over care they would have challenged Alder Hay regarding practice but also not praised the staff in their judgements.

I caveat all of that with - have no medical or legal training. And of course the main important caveat that these are two young, vulnerable parents facing the worst possible scenario and trying to find "an explanation" however (un)realistic this may be.

Just getting worse. The photos are awful but the comments that keep coming with them.. It's just getting the 'army' more and more fired up. Feel for what they're going through and facing but no doubt staff feel so on edge.

Sad irony is that many parents will lose their child tonight, tomorrow and going forward.

No publicity, no ranting and raving from any armies.

They also deserve quiet and respect in their journey and should not be exposed to this kind of hyperbole from hangers on.

I accept the Dad is bereft, and Mum too no doubt. But I have doubts about Dad's ability to accept the situation, as many other parents have had to do quietly and in tears of grief too.

TE will not listen to reason now. I feel for the family but he really isn’t helping Alfie anymore.

Trumpdump as far as I know, nurses can't choose not to care for a patient. You just have to bite your tongue and care for the patient to the best of your abilities.

Just so sad.

Most hospital trusts don't allow photos / videos to be taken on Trust premises by patients or staff. It can be a sacking offence for staff. I can only assume these photos are taken covertly, as it is a clear invasion of the patient-Alfie's privacy & dignity.

ET tubes bleed. They dislodge and repeated reinsertions result in swelling and trauma to the vocal cords. Ventilation traumatises and damages the lungs. Ventilated lungs damaged by barotrauma can also bleed. Suctioning to clear secretions is also traumatic and sometimes causes bleeding (and in Alfie's case seizures). There is a good reason why suctioning is carried out by nurses and not by a machine. It's a medical procedure with side effects and risks.

Added to this his entire body is mulfunctioning on a profound level. His brain has degenerated to the point that it can not send signals telling his body to breathe - it would not be surprising to find out that his other organs are also struggling and failing. His tissues may not be able to cope with normal environmental stressors (let alone ITU), he may not be able to heal properly, he may not be able to clot his blood etc.

Usernom my DD was in GOSH recently in a side room, I could and did take photographs of her, only for relatives obvs but no-one would have seen me as in the room on our own for a lot of the time.

Shrimpi so unbearable to read but you will be right of course.

I think people do not understand how grim the reality is. It must be very difficult for staff to be essentially forced to carry out harmful and traumatic procedures to keep Alfie alive, only to be criticised for "abusing" him when the injuries caused by these procedures inevitably occur.

It's right to find the thought of him bleeding from his lungs and mouth and his skin breaking down really upsetting, because it is. It's undignified and cruel and also his only foreseeable future as long as extreme measures are used to keep him alive.

It is horrific that's all I can say and yes I agree, undignified and absolutely cruel. The parents have lost their way in caring for him .