Got our GOSH results today, not sure what to think

[bambiandthumper]

We got the results from DTD's biopsy today...they want to preform a radical nephrectomy remove her kidney with the lowest function :(

In a way this is good as they are almost positive it is damaging her 'better' kidney,and so should stop its function declining, but what if it doesn't stop declining, or it stays at the same function?

I know people have kidneys removed the whole time due to transplants ect.. and manage fine but I'm concerned as she already has decreased function in the surviving kidney, and what if it continues to decrease for what ever reason (she is more vulnerable to infection) then what will she do?

I know its GOSH and this is obviously the best decision, but it just seems so...drastic

Am fine thanks but yup fed up of winter here!

I think it may be an idea to do as you're thinking because whilst a New York summer is super hot I believe autumn (ok, ok) fall is lovely.

Thanks minxthemanx, I'm so glad to hear that your DS is fine now, that sounds very scary.

It was hideous, Bambie. A fit, sporty 9 yr old, suddenly in Intensive Care in GOSH with slim chances. I have aged about 50 years. Thank God for GOSH - hope they sort your daughter.

Bambi, I did speak to my dr friend, but he said that the only time he came across this scenario was when kidneys were damage due to infection, so not much help I suppose (and apologies as I forgot to return to this thread to update you)
Good luck!

Oh minxthemax I cant even imagine, that sounds dreadful :(. Sorry if these seems very simple, but how did you discover that his aneuyrsm had ruptured? I hope has recovered now.

Yes nightcat her loss of function is a result of an infection.Thank you very much for asking your friend about DD, thats very kind of you.

sorry, minxthemanx

He had a headache that started 2 days before Christmas and just got worse. GP said it was sinusitis, as over an eye, but antibiotics didn't help, he was in such a lot of pain - took him to A&E, they said migraine, but over next fortnight just got worse and worse, with him collapsing in pain. Then his eye went droopy and sort of 'dropped', bit like a stroke. Nothing showed up on CT scans/MRI/lumber puncture. Deteriorated really badly one night in hospital, so he was put into a coma and blue lighted into GOSH. Took another 2 days of scans etc to detect the aneurysm. Very very rare in kids, and usually fatal. We have been so lucky.

That sounds absolutely awful, I can't think of anything more terrifying. You must be so relieved that GOSH found it, and that your DS is still with you.

DH and I had a long chat with DD's consultant today, and she will have the nephrectomy in 6 weeks. If everything goes to plan her kidney function should plateau, then start to improve (though never to what it should be) as she grows, though this will be a slow process. However they are not 100% about this, and our worst case scenario is that she will continue to loose function till she needs a transplant , but i'm not going to worry about that till it happens, which I hope to God it doesn't.

We now have copies of all her tests, which is good for both our records and our insurances for when we move, and the consultant wanted us to have the means to seek a second opinion if we felt we wanted one. We're not to going to do this as GOSH have already consulted with other hospitals, and we have the upmost trust in them and her consultant.

We are not going to tell DD about her op till a few days before, and as she is going to have to spend about a week in hospital we'll try and ship the others off to Grany's me thinks. GOSH have also offered us pre-op tour and an explanation session for DD with the play specialists when she comes in to do her bloods ect.. before, which I think will be very beneficial for both us.

I thought I would feel very emotional afterwards, but I feel strangely calm, and almost relieved, as it feels like we are finally, hopefully, getting somewhere.

Didn't realise this was so long , but again has been very useful just to write everything down.

Sounds like a plan!

Hope all goes very smoothly.

I hope so :o