Misty breeze wraps about my shoulders, thinly clad. I shiver not, despite the coolness on my skin. Comfort, I now feel. Is it you my precious Angel?

[chipmonkey]

Starting a new thread for our angel babies
Sylvie-Rose 16/8/11 to 4/10/11 too short my love, too short.

rosduk, I am thinking about your darling Thomas
Mias, extra special gifts, evidently much deserved and made with love for a much-loved boy. What a roller coaster of emotions you must be going through.
cafe I hope you can get beyond this sticking point with the counsellor if it has been useful on the whole. Without being rude, perhaps she should do some research into bereaved parents and the catastrophic effects of losing a child.

rosduk thinking of you and Thomas x

SaintVera, I see her for about 50 mins maybe once a month, maybe once every two weeks or sometimes every week. She's usually good but doesn't really pass comment. I just blurb at her and then leave! She never is on this point though, I cried about DD about a month ago and she was staggered! I guess she helped me realise why I feel so guilty about her death, by looking at other stuff I feel guilty about (lots of other deaths as it happens, none of which were my fault) but she did then tell me I have a ''god complex'' and I should stop trying to save everyone with the emergency med that I do. I also related what happened when a man died on my train, I did CPR but he died in the summer and I told her I was feeling very bad that I didn't do 'the thump' before CPR and instead of saying 'er that's fine' as tbh it's not taught, she just said 'well you'll never make a mistake again will you' medical schools eh :p

cafecito, this woman is not geared to helping you, she really isn't! Why on earth was she flabbergasted that you burst into tears about dd's death? ffs, I'm fairly sure that even before I lost Sylvie-Rose, it wouldn't have surprised me at all, if bereaved Mum had done that.

You need someone who specialises in bereavement.

Right, I have obviously pressed the hide button on this thread by mistake! I am going to ask how to reverse it because I'd into Fort Knox more easily than this thread as it is at the moment.

Oh, well, shit, cafecito. I have the equivalent in a first in English from University of Texas at Austin. I'll be 42 in 2 months. So here's my 'counselling', as a bereaved parent. You put that boy where he is loved and cared for. You tell him that, too, and be plain. 'Mama loves you very much, DS (insert name). Remember how I told you about DD? It's okay if you don't.' Then wait. 'Well, DD died, and now Mama is trying to make a new life for you and me, as a doctor, that's why she has to work like this. So for a while you're going to stay with . . . It's because Mama is on her own otherwise and it doesn't mean Mama doesn't love you. It's that Mama has some work for you and her.'

And really, just be plain.

My DS just turned 4 last month, and he's seen an ed psych and that's what she said to do.

She asked a lot about how we spoke to DD2, newly 7, about Aillidh's death.

Now DD2 saw Aillidh on her birthday, 19 June, and Aillidh was already dying. She was on 10 friggin' ltr of O and psuedomonas migrated from her gut through vomitting and HMV had migrated from her throat, both diagnosed via bronchoscope and later again through bronchoscope after ventillation.

As I said, previously, I have two very good friends who are medics and one is a neurosurgeon and one is a trauma doc in Denver who works in the Level I trauma centre there. You have to say they died.

That's what I did with her. She asked where her sister was, and when we'd be going to hospital to see her, and I sat her down and said, 'Remember how you say Aillidh and she was very sick?' She nodded. I said, 'She had two lung infections,' and showed her where our lungs are and explained how they work, and asked her if she understood. She did, because we'd read of fish, and how they have gills. I said, 'A lung infection is known as pneumonia. Can you say pneumonia?' And she repeated it back to me. I said, 'Pneumonia is very serious. And people die of pneumonia. Aillidh died of pneumonia.'

Oh, how her face fell. But apparently, this was the best way to try to put it. Not 'slipped away' 'fell asleep' or what have you. The person died.

Now I don't know how old your DS is, but it appears he is of nursery age and the ed psych has said it's best to be plain with a child that age.

'You're going to stay with Gran/Auntie/Friend for a bit while Mum studies to be a doctor. You will be looked after by Grand/Auntie/Friend but Mum will be around and if you want to you can ring me. Mum loves you, but Mum needs to become a doctor for you and her.'

And well, blunt instrument (no wonder Aillidh's consultant loves me :o)

Rosduk, remembering beautiful Thomas xx

SACK, cafe. Hell, we're doing a better job!

Hell, there was a junior, she was in her 30s and had two children, when Aillidh first came onto the unit, who was better and not even a counsellor. Who took time to converse, about how she'd changed as a doctor, after she had her children.

That climbing mate of mine, that Level I trauma doc, he and his wife had first a son, who was born at 28 weeks and he didn't make it, and he has more empathy than this counsellor.

How to man up and deal? I'd say first, explain as I did previously, to your son and then get him with those family attachments. Or friends. Explain, 'This is NOT your fault. I'm going to be a doctor for both of us.'

Then see someone and get that insomnia under control. See more than one if you have to.

Do what you can, with your son. Tell naysayers and haters you don't appreciate their comments.

And find a new counsellor, call Compassionte Friends hotline, always answere by a bereaved parent. Get counsellors who specialise in bereavement.

And keep talking. If I were closer or won the lottery I'd take your son on and you, too. But for now that's how it is.

Rosduk, your Thomas is added to the litany I say every Saturday night, the night my daughter died, to remember those we've lost and to speak their names.

Know, know, that someone says all their names.

expat, thank you. You're absolutely right and thank you for understanding and not thinking I'm a dreadful person

I'd lay it on thick, too, tbh, with any GP I see. I think a lot of us have PTSD.

I saw a professor our consultant called before Aillidh had her transplant. I travelled to Edinburgh to see him. I wore my suit and when he came in I said, 'Thank you so much, Professor Wallace, for meeting me. My name is Expatinscotland,' and held out my hand. He said, 'I'm only Hamish.' Then he took me to his room, alone. I swivelled my head, for it was a while before I saw her consultant alone, and only after she found out I'd sought audience elsewhere for I despise being sat before a bunch of strangers brought to sit in case I behave like a criminal, which I never did.

He said, 'I am an academic here, and (A's consultant) told me you have a level head. I went to school with her, you know, when you were 5 years old.' I am 42 in two months. I turned 5 in 1976.

Oh, did I sit down when he invited me! After saying he'd read all Aillidh's notes he asked, 'How many days did Aillidh spend in hospital.' I answered, '134.' He asked, 'How many in strict or source isolation?' I answered, '127.' 'How many did you spend there?' 124. He gaped. Alone? Yes. 'Dear god, I'd have been sectioned.'

Oh, I understand. If they're okay with him so they are. I'm far from there, but would take him on in a minute, with my own son who is 4 and my daughter who is 7 and wise beyond her years.

It's someone who loves him.

You know what's a dreadful parent? It's a parent who just doesn't give a fat rat's arse. It's someone who wouldn't be up in the night, ruminating about her child and what damage might come of her doing a degree, she or he just wouldn't give a toss or even think to do so. The thought wouldn't even cross his or her mind.

So right there, you're not shit.

I had to forgive myself a lot here. Aillidh's illness, oh, it put me in a bad way. I was there, for nearly every second of it, and at best we got away with 4 hourly obs.

I was sleep deprived and, apart from a friend, alone, as my husband had to stay with our two and Aillidh was much in strict iso, such is the protocol for AML (t 6, 9; mutated FLT 3 - oh, just Google FLT3 AML/paediatric AML FLT 3 and you'll just get a ton of bad news).

I just did the best I could and that's what we all do.

Anyone who says you don't love your son can get knotted because I said, if you didn't, you wouldn't care at all.

wow to that professor! and wow to you. I know what you mean, spending every single day unrelentingly with a deteriorating child and having little ups and huge crashing downs and watching them suffer is just utterly torturous. It's often not acknowledged by the medical profession, They do their shifts, their hours, their ward rounds, their meetings they go home. They often don't stop to think, this parent has been here for weeks, has not been home, can barely leave the ward without worrying, can barely shower, can barely sleep. It is just an awful thing to go through, and then to lose your child at the end of such a torturous journey makes it all the more traumatic.

thanks for that point though expat, I do worry and ruminate rather a lot. I'm in my mid twenties I could be out partying if I didn't care, making the most of child free evenings, but I'm usually at the gym or antigravity yoga and then at home working or MNing I'm SO cool. I hate going out. I just like time to work and worry a bit

FWIW, after that 134 days in hospital, she was re-admitted 1 May 2012. I spent every day and night from then. She went into ICU 26 June 2012. Then I called her father, who sent our two children to Edinburgh and did after that first night, which GiraffesCantDance did, as I was beyond exhausted. By then, Aillidh had taken the following post-transplant: typhilitis, mucositis, sinusitis, blepharitis, human metapneuovirus, psuedomonas (these two ultimately killed her), GVHD, potassium to 7.2, potassium to 1.9.

I sat for every single one of these, and I can't tell you, how much it fucked me up. On top of the fact of dealing with three consultants in PICU whom, well, I'm pretty hard, I'll admit that. But some cold part of me hopes that maybe they meet with another brick wall, preferably at high speed, because, well, I've known and even seen people die, climbing, including Brian Hermelee, age 23, who bled to death in front of us, and can't imagine being how they are.

DD spent much of her time in iso too because she had transplants so she was on heavy immunosuppression. AML is awful- just a side question, but did Aillidh understand her illness? so unfair

what were the consultants like? arrogant clueless insensitive twunts? I'd really like to specialise as a consultant paediatric intensivist one day, I think, but I hope to have none of those qualities

I'm good with empathy, of course, but I have become TOTALLY hardened to death already. I just don't flinch at all now if a patient dies. I am like a robot. I think it's something that can happen in medical professionals who encounter lots of death but it should never ever be a feature in paeds, they should be sensitive at all times and also should maintain and open dialogue with you as the parent - there's that duty of candour thing in the pipeline- but yeah I worry actually that I'm going to be a cold stony heartless dr.

the absence of sadness talks about how it's common to become 'dehumanised' it's already happened with me

try again - I thin I might do the unthinkable and attempt to go to bed [!] I'm aiming for spinning torture in the morning (been comfort eating of late, backside has doubled in size) - wish me luck! I'm going to read some pharmacology receptor mechanism stuff that should send me to sleep really quickly

Hamish Wallace, *cafecito, that's his name. He's a father of three and grandfather and, like A's consultant, why retire? He's at the top of his game, as she is. Professor Brenda Gibson, that was Aillidh's consultant. Oh, when Aillidh was dying, I went to get her, as that Richard was on in PICU.

Have you gone through pneumothoraxes yet? They are quite distinct. You can touch your patient's skin and it feels springy and crinkly. The respiratory docs will tell you it feels like bubble wrap, but you can feel it before that, up above the sternum. It is crinkly. You don't need to listen to their chest. If the patient is on CPAP or BiPAP it might be surgical emphysema, if they are vented it's a sign of much worse.

And never, EVER understimate the parent who has been with his or her child through long-term illness of any sort or cancer. I can assure you, they know. They just do, and are likely far more educated than all but a consultant like Brenda Gibson about their child's condition.

Anyhow, Richard wanted to have a little discussion, before she threw the pneumothorax, about how piss poor her condition was, as if I didn't already know, being obviously stupider than all are to him.

Let's just say I was already known for being less than entertaining of all but three consultants in there at that point, and that I'd already heard very poorly concealed (I have worked in the legal field for 20 years, really, these people need to develop some discretion) discussion of my loyalty and that of others, to Professor Gibson. Oh, well, no shit. Who makes the final call? The lead consultant.

Already had it with a junior. Aillidh was written up for Ribovirin, courtesy of her cons and the cons there, that David person up from Birmingham, whatever god there is then god rot him. The S-whatever came in, to converse with the nurse, about how it how to be written on cardex. Nurse was balking. Silly junior was waffling. I said, 'What are you, Patricia? You have orders! I can tell you where they came from because all your little rumours are true, I'm her bitch and always have been and always will be. Do you want me to get the two of them? Or her? Or (her close associate)? I'll have the nurses in Schehallion page them. You are a doctor. You have your orders. Don't be stupid or I'll get them. Your boss ordered it, you make her do it or here is some rope.'

I felt that pneumothorax myself.

I went down to see Brenda and told her I felt it and that Aillidh was going to die, but that I had one wish and that it was that she did not die on Richard's watch.

So she did not.

Don't stop being a doctor, cafecito. But remember your DD and remember you, and be a very good one.

Don't be afraid. Don't listen to people who say you are fucking up your son, either.

'what were the consultants like? arrogant clueless insensitive twunts? '

No, not the Hamish Wallaces, Christopher Kidstons and Brenda Gibsons of this world.

AMAZING people, able to be consultants AND human beings.

Aillidh did not understand the gravity of her form of AML. She presented with two genetic mutations, and if you get the chance and do your haemo rotation, google them. The first was t 6;9. The second is far more damning and rarer in children, presenting in only 12% of paediatric AMLs and, if you're interested in genetics, a real palaver, for it outwits all chemo known to treat AML: it is a mutated FLT3.

Aillidh had the worldwide protocol for induction chemo in AML. It is called ADE. Atoposide, Daunarubicin, Etoposide. It made her bone marrow go from 60-3% AML. This, as you know, is morphological remission. Guess what? The fucking FLT3 mutation was still there.

It was knocked out with FLAG-Ida (fludarabine (aka AIDS in a bottle), atoposide, GSCF, high dose cytarabine, idarubacin), and then it was a race to keep her in remission, for many such AMLs relapse quickly.

And let me tell you, it's the ultimate puzzle for any geneticist.

Her FLT3 was held in check by a drug called Sorafanib, made by Bayer, orginally produced to treat kidney cancer. It is an inhibitor. But it, like high-dose cytarbine, is known from clinicals not to hold too long.

What is needed is targeted gene therapy. There are two drugs, one is being designed by Novartis and another through a grant from CRUK, to target the FLT3 mutation, the most common in adult AML. The two previous to these failed at stage III.

People have sent me news, of B-cell ALL's treated in clinicals with a manipulated form of HIV. All I can say is that little to no progress has been made in the past 30 years on A's form of cancer.

And that she was harvested, 500mL, of bone marrow fluid, cancer-free, and this was donated to medical research.

Her only legacy. You put that shit in a petri dish and it will almost instantly show you a very aggressive form of AML.

It doesn't make her any less dead.

I found that all the doctors just view parents as idiots. I gave a talk recently at a patient safety day for junior doctors. I said that parents know what they ar talking about and that they must not make such sweeping generalisations that anyone except a clinician is an ignoramus. I'm working with a safety forum that's launching a speak up campaign next year but I fully believe there shold be somethig for relatives, carers, parents as well as HCPs. The parents of a child are the ones who know something is wrong and often know more about the medical condition than the doctors do and they can be overruled and ignored time and time again (as I was) and if they weren't, things could be picked up sooner and deaths could be prevented.

DD was on cpap, bipap, ventilation and then before she died she was on an oscillator.

I've not done pneumothorax in my syllabus but outside of med school I have done it in emergency medicine, I had to decompress a man's tension pneumothorax and a haemothorax, but those are the main ones in the kind of trauma accidents I deal with. But I did not know that about the sternum and what it feels like.

I just hope that that harvest can come to some good, and I made a mistake, the A in that acronym at Ara-C, cytarabine, not Atoposide, there is no such thing. The FLAG-Ida is such a high dose of cytarbine that the patient has to have eye drops, every two hours, for days after the round has finished.

And I made a mistake. Ara-C, the A in the acromyn, is the chemo drug cytarabine. During FLAG-Ida, the drug is at a dosage such that the patient has to have eye drops every two hours, even for a week after the round has finished.

It's inspiring to hear there are good consultants out there. Tbh DD's neuro cons was excellent. The only one who was genuinely frank and honest with me. She sent me a card after DD died. And one consultant in PICU was wonderful but only did nights and was only greta because she realised I understood, and also she had a child the exact same age. The rest of them though were hopeless. I hope I can be a good doctor one day. It will take years (another reason I'm told I'm a bad parent and 'selfish' for leaving a well paid job with stability and pensions and a nice corner office) but I think it's the right thing to do under the circumstances. None of them will ever understand because they've never been through what we have.

I would be interested to look into the FLT3 mutation - do you know which centres are studying it?

(clearly my sleeping is not happening!)

I'm sure it will help, expat. I don't know where half of DD's organs are. I think various livers have been turned into slides and they retained all of her brain at GOSH I doubt much can come of it, it seems goulish to me because it would only be a bit of a freak show looking at all the damage they did (!) but with Aillidh they have a real cell sample there that can be cultured and worked with for a long long time. I'm sure her legacy will be to help many, many patients in the future. I really believe that, not that it makes any of it any better at all in fact it makes it all the more unfair in a way.

FWIW, cafe, the haemothoax as you know is very acute, and associated with tumbling sats. Aillidh threw one, two days before she died, during physio.

But the pneumothorax in the oscillating vent is more insidious. It is usually a bi-product of ventillation and respiratory failure. You can feel it in the patient, though, on touch around the sternum. It's the same feel, crinkly. The ICU docs will show you oedema, spreading down from the sternum into the thorax and even the arms.

It is a very bad way to die, according to my trauma doc and neurosurgeon friends. There is only one solution for it, and that, of course, is the turn down or off the vent, and if the patient is already in kidney or other organ failure, it's game over.

But leave it and what will happen is first the patient's heart rate will increase rapidly with the air pressure on the organ. Despite sedation, the patient will waken, in much distress as the pressure increases on his or her vital organs. But he or she will still die.

A pneumothorax in an oscillating vented patient means the lungs have failed. The cause of death is what hers was: respiratory failure.

(i) respiratory failure
(ii) intersititial pneumonia/pneumonitis
(iii) acute myeloid leukaemia

As the trauma doc, my friend, said, don't let your oscillating vent patient die of pneumothorax! It's not pretty.