doctor appt friday for DS (sicky, off-balance, bad ears)

[EdgarAleNPie]

right - he's had an anti-biotic ear spray for two weeks. he has been particularly sick the past week so its doing bugger all

my plan for friday is to ask

-for heavy oral anti-bs to realy kick the infection (if it is bacterial, as if its in the inner ear an exterior spray won't touch it).
-for a referral to a paediatrician (which i can always cancel if he gets better before it coes through)

• anti-emetics/ anti nausea pills? he's been keeping very little food down. quite thin.

how does that sound for a plan?

he already saw audiology, they said 'yes, there's fluid in his ear.' is there any point in seeing them again?

He's now been down with this since November. Gone from running and kicking a ball to staggering around the house and falling over. can't manage more than a few yards without support.

ok, any thoughts?

Sending good vibes and lots of love and luck from here xxx

i think the notebook i borrowed has a webcam but thanks for the offer!

Edgar have pm'd you

So very sorry to hear this. I know exactly how you feel and how worried you will be.

My DS had Medulloblastoma when he was 8. He's now a fit and healthy 23 year old!

He had neurosurgery and radiotherapy (they didn't give chemo for brain tumours back in 1995)and it was a long haul but we got through it as I'm sure you will too.

We lived at the hospital for the 5 weeks DS was an inpatient. He was in for a week before they operated when he had his drain put in and started the steroids. And yes, the appetite the steroids cause is huge! Dexamethasone if memory serves.

Please feel free to PM me if you'd like to ask any questions about DS's treatment. I know the treatment regime in 1995 was probably different but I hope our story reassures you that it really is treatable.

yes it is dexamethasone - he's demanding the same foods non-stop....he just wants fish fingers!

Well I think under the circumstances it should be fish fingers all the way!

DS's ward was next to the restaurant for the whole hospital so it was easy for us to find tasty morsels to try and satisfy his appetite. Cost us a fortune that first week!

At least fish fingers are relatively easy :)

I would say don't stress at all about weight gain whilst on steroids, go with whatever he wants.
DS2 was on steroids for a while but has some weird metabolism/gut so didn't react to them at all (negatively or positively).

DO you think you're all prepared? Are there any questions you have before going in?

Edgar just wanted to send you all lots of positive thoughts, I shall be thinking of you all xx

Lots of positive thoughts and prayers from here too.

Am craving a fishfinger sandwich now!

Edgar - just wanted to say that I'm thinking of you and your family. Have been long term in hospital ourselves with dd and understand the issues around other children. Can't really add much to the fab advice here, Pixie, Blu and MoveIt have pretty much covered it.

Make sure you and dh look after yourselves too - it can be particularly hard if you both cope in completely different ways. Take care x

Edgar, was glad to read your updates. You are coping so well, I think you're doing brilliantly!
Wishing ds a speedy recovery, will be thinking of you xx

DS recovering now - he's doing OK - the hole looks very small and they say they got most of the tumour out apart from a small bit stuck to his brain stem.

very long day - he was out from 9am- 6pm.

fish fingers on standby :)

I'm so glad you are all through it!

Sounds like how it was for DS. He was in theatre for a similar amount of time and they couldn't get all of the tumour cos some bits were attached to the brain stem and they cannot touch it as it controls some really important stuff.

The worst is over. It will take a couple of days until he is back to normal. A GA takes its toll on children and if he has been given morphine that will add to it. My DS didn't tolerate it well. Made him v sick. And they have to cut through some very thick muscles at the back of the head so he will be very sore and grumpy for a good few days.

Relax and breathe. If you can have a glass of wine then have one. You've earned it, I know!

Thinking of you all. x

Glad that bit's over and that it went well :)

Watch out for the 'come down grumps' from him & the weird sort of 'anticlimax' feeling you & DH may have.

Good news. Hope you all got some sleep. And I hope DS gets lots of fishfingers!

I've only just read this.

edgar sending positive vibes to your whole family.

I'm glad DS is doing well and I'll follow your story.

Thinking of you all.

Glad to read that it went well. Well done DS and Edgar xxxxxxxx

Thinking of you x

So pleased the operation is over. Lots of best wishes to you and your son. Hopefully he is now on the way to recovery.

best wishes glad the op went well xx

thanks everyone.
He sat up today and had some pink cake.
Hooray! it's even better than the first time he ate by himself.

and kept it down! he was passing a ball from one hand to another (so hopefully his co-ordination is still ok)..

swelling coming up but we got a ward bed next to the window so he won't roast. Spent morning taking turns with Dh holding hands as he came in and out of consciousness...

oncology won't get back to us before friday soonest. quite worried as i want to know what the future may hold now the immediate danger lessens.

totting seems to be a good place to get curry rather than cake, but he isn't well enough to leave with non-family yet.

Glad he's up and eating. Roll on Friday and fingers crossed for some good weekend news for you all.

Xx

Glad it went well and he is up and eating x