Wednesday 16 May 2007

Wednesday and tired

Hello my lovely peeps

Well we are back from London - oh and what a faff! LOL I like that word - well it's hard to explain but it was like getting blood out of a stone talking to those doctors! It really annoys me - they seem to hold info back or they dont know what they are talking about.

The upshot is that Sam IS growth hormone deficient and apparently I was supposed to have had a letter to tell me that officially - I never did get that!

Anyway, then she says that when Sam had his first lot of tests he was supposed to have had a primer or something (Jeannette what does that mean?).  Anyway, it was some sort of tablet he was supposed to have and he didnt which meant the tests werent accurate or something - didnt really understand as the doctor was not speaking good English - and was very quite in her voice - mumbled alot! Anyway, I got all confused - but then Mr Stanhope (the consultant) came in and he explained to me that Sam's pituatry gland is fine (cant spell that), and I said then why is he growth hormone deficient and he said that it can just happen. (You see Joe's pituatry gland is abnormal).  Anyway bit complicated to explain but Joe's is more complex than Sam. So Sam's growth hormone is ordered and she said - you go to the GP for the growth hormone and I said what all of it and she said yes and I said I dont think so. She looked confused - and I said No I only get the growth hormone from the GP - I said dont you have to sign Sam up with the pharmaceutical company so they can send a nurse out.  She said oh yes I think I do - flaming hell - she should be telling me that!! Now if I didnt already have a child who was growth hormone deficient I wouldnt have known would I!!!   Then she said to me that Sam will have growth hormone til he is 16 so I said right so he will only have it for two years - I said surely thats not long enough then she says oh no it will be 18 - she had meant the bone age - blimey they just dont explain stuff!!  I feel a bit in limbo now - Im not sure if they will contact the nurse.   Oh this will make you all laugh - she said to Sam - how would you like to inject yourself - well how the hell would he know!!!! That made me cross - when Joe was diagnosed we saw a nurse and she explained all the possibilities - showed us all the pens and the injections - she didnt do that with Sam.  So I said well Im used to the pen that Joe has and she said to Sam will that be ok Sam - and I said how would he know he isnt Joe!!! OH dear sorry I went off on one then didnt I! It probably doesnt make any sense at all!  I might phone up Mr Stanhope and talk to him about it - the growth hormone will be available at the GP in three weeks time - I dont know if the doctor will contact me or not and also I need to get the nurse from Ferring (the pharmaceutical company) to come along when the hormones are ready so she can show Sam what to do. She also needs to bring the pen and all the stuff that comes with it.  Blimey think I will need a bigger fridge with all that growth hormone!

Phew sorry had to get that all out it probably dont make sense!!!

 

9 comments:

Anonymous said...

wow what a confused and very backward hospital.

Anonymous said...

Oh dear Laine,

You don`t need all these complications on top of everything else. You would expect a qualified doctor to know what he/she is talking about. If you hadn`t dealt with this problem with Joe you`d have been none the wiser after the consultation. Take care my dear.

Love Sandra xxxx

Anonymous said...

Jeez what a nightmare of a day ~ like you said it's a good job you knew what was going on.  

Jenny

Anonymous said...

I think they give a primer to stimulate the pituitary gland or something, not quite sure though! Sorry you didn't have much joy at the hospital today, let's hope they can get the treatment up and running for Sam. Jeannette xx  http://journals.aol.co.uk/jlocorriere05/Welcometomytravels/

Anonymous said...

Watch out you are going to grow massively enourmous men!  Linda

Anonymous said...

oh it is pain when you get kind of service......

Anonymous said...

Blimey Laine, I wouldn't trust anything until you get it checked out properly.  In a way at least you know what has to be done but what if you didn't?  This is your boy's health and it needs to be carefully monitored that all is correct.  I'd phone the consultant back and check out exactly what the game plan is.  I think its disgraceful that they are being so flippant and inprecise, especially where growth hormone treatment is concerned.  Hugs, Terry x

Anonymous said...

This must have been very frustrating for you its a good job you knew abit about it your self ,otherwise you would have come away,with all the wrong information ...love Jan xx

Anonymous said...

Faff... :o)  
How annoying though, that you seem to know more about all of this than the experts do!!  
Made perfect sense.
Sara   x