Prayers for Aillidh.

[chipmonkey]

Just wanted to start a prayer thread for expat's little girl, Ailidh, who has been very ill with leukaemia. Just wanted to show our support and pray that her treatment works and that she is back in action very, very soon!

Some medics are amazing and love kids. My dh is a GP and consultations with kids make his day! He often comes home and says "I saw X today, they had an ear infection but they were so cute and I got a cuddle!"

Shame actual paediatricians are not the same, sadly!

Expat, do you have visitors tonight? I could pop In, if its any use? Just a friendly face without a white coat....

think she having ct tonight, i offered to come up and expat said not tonight cos having ct.

Keep lurking but little to add. Ailidh is never far from my thoughts

Oke doke giraffes. I am LOL at scary east ender, is that you?

No dahhling I am from the leafy suburbs!

It is another childs Mum she means

ps the pens and paper you brought up are great - I had a wee shot!

You big wean!

any news?

Because of the battleaxe bitch down in CT, Aillidh will no longer comply with them at all. So we're going to have to hang round here all day waiting for a departmental xray as we have to wait till they're quiet since she's neutropaenic.

Still drops her sats at night. Still on oxygen.

They suspect a condition called PCP that is common to those who are immuno-suppressed, but without CT they can't tell for sure.

Bloody bitch.
Has Aillidh seen the play specialist? Ours was lovely and the children adored her. She was such a ray of sunshine in that place.
Personally I dont blame A for non compliance and its a good thing she is taking back some control. It might be helpful for her to work it through with someone nice though.

what happened last night?

Oh no. It just keeps on going :(

Good for Aillidh for standing up to the battleaxe bitch. Obviously not good that you have to wait for the other xray.
Some workers in HC setting really think far too much of themselves. I hope you are writing this all down expat. PALS would surely be interested.
A is an hour and a half post prayers from DDs school. Whole school assembly today.

Ailldih is doing good if she is telling the ct scanner lady what to do! I'm so sorry that there is hope for improvement but as a result of staff being bitches it cannot be seen.
Fingers crossed for you x

Expat, we are in a completely different situation, but I deal with paediatric doctors on a regular basis. Sounds like you got the measure of them pretty damn quick. They travel in packs and don't ask you for your opinion because it's irrelevant. (I'm a parent - not a dr).

They tried that with us, and didn't last long as we set them straight too.

Do what you need to protect your girl. We have said no to numerous procedures for various reasons (sometimes, just because enough is enough - they are children after all). Our regular doctor now respects us and asks our opinions as he knows that he has to work with us, not just medically on our DS.

I hope your consultant is listening to you and A, as much as she is recommending treatments. You are doing what needs to be done for A, and exhausting as it is, you are exactly who A needs to fight her corner. Hope she continues to improve.

CT madam should have read her notes. Aillidh is 100% feisty I trust that is documented therein.

Still thinking of you and Ailidh Expat

Likewise. Hope you are both doing okay (or at least as "okay" as is possible in the circumstances).

Reindeer, you are right about paediatric doctors travelling in packs. I remember being in hospital as a child and feeling quite intimidated by the masses of people that came during the ward rounds. A few months ago I was visiting dd1's friend who had pneumonia, and there were so many doctors on the ward round that they couldn't fit into her room, so nothing has changed.

When I was in hospital recently the ward rounds had at the maximum the consultant, registrar, SHO and assigned nurse, and usually just the reg and nurse. So much less stressful. I know that HCPs need to communicate with each other, but they should always do so sensitively.

Keep fighting for your dd Expat. She sounds like she knows her own mind, just like her Mum. She's still in my prayers.

Still lurking, and doing everything I can, which frustratingly is a big fat nothing, to help

Be up at lunch time ish :)

Hopefully, ailldh is improving. Your all in my prayers still

Well, she started to spike up again quite a bit and her oxygen requirements went up to 10ltr last night. Since then, she's needed more than she was on, although thanks to physio she has brought up sputum samples for analysis.

Discussions between respiratory physicians and A's two doctors has lead them to conclude that Septrin must be used. They have ruled everything out and she is not a good candidate for lavage because of her oxygen dependency.

Sepsis can also be behind her failure to engraft, although Septrin will suppress what little marrow function she has.

Her MMF has been cut to try to jump start engraftment.

She is still 100% donor by blood, bone marrow aspirate and trephine biopsy chimera.

So here we are, still fucking hanging on.

Have now dismissed the play specialist for about the 5th time.

Why? She consistently leaves any visit with A till last.

And has therefore sat in the rooms of EVERY other patient in the unit who is in source isolation (they are placed in this for known infection).

So no, I don't want a 'break' with you sitting with her when I'm trying to eat my dinner or get a shower, which I do in the evenings otherwise I can NO chance of privacy at all whatsoever.

Oh expat :( she is still fighting,she's not going to give up.
You belive in her, the doctors are just trained not to care.