DS being admitted to Great Ormond Street in 2 weeks

[brandy7]

Hi there,

I havent been on here for aaaggggeeessss!!!!

My toddler was diagnosed with Diabetes Insipidus (hormone problem) by our local hospital, they then tried to withdraw there diagnosis so i asked for a 2nd opinion.

Luckily, after much battling with my local g.ps funding i got a referral to Great Ormond Street. Had an oupatients appointment and they want to admit my son for 5days to redo all the tests plus more.

Im dreading it as i know what the dehydration test involves and its awful for ds and me watching him. Also got to have another mri scan of brain and pituarity gland,3weeks of testerone injections as London discovered both his testicles are undescended (local hospital missed that one), more blood tests to see if his small size is due to another hormone deficiency and i could go on but i cant remember all the other stuff.

I am obviously worried but also im thinking god damn, how can i not wash my hair for a whole week!

Anyone any tips how you get through it?Ive only done 1night with him before and that was local so had visitors. My mums coming up for the mri scan because of the anaesthetic, other than that im on my own with him

When is he being admitted brandy?

There must be a MNer nearby who would be happy to let you use her shower.

It sounds awfully hard, but it is better to get the correct diagnososes. Can you bring a laptop and MN when he is asleep. ?

hi fairy

9th July, 2 weeks tomorow, hope it doesnt drag too much, seems like ages away

'Tis LGJ BTW.

Surely if he is staying in all week they can try and give you a family room. GOSH is so used to children im sure they will try and make it as easy for your son as possible and will be much better than your local hospital has been. Hope it goes well
l

ooo hadnt thought of taking my laptop, but doubt theyd have internet connection on the ward would they?

i wont be able to leave ds as the tests are continuous from what i can gather. praps i can have a wash in a basin somewhere or pretend im camping and just look a mess

hi LGJ! i was gona name change as thought no on would remember me anyway

Lisa, on the ward he will be on they have 3 overnight rooms, so im hoping as were in for the week we will get one. if not they say they MIGHT be able to provide a bed IFNOT you get a comfy chair.

im gona miss my bed

You will be able to use the parents room to freshen up!
good luck

ah thanks for that wishing

I'll keep my fingers crossed for the overnight room for you
Make sure you take plenty of hair ties then, if not gonna be able to wash it.

Hi Brandy -
I haven't stayed overnight in GOSH, but we have had 4 night stays in another big hospital with DS.
Firstly (straight to the priorities!)- I am sure they will have a shower. In Kings there was a shower, and in the day room, a small kitchenette with fridge and tea and coffee-making facilities for parents. Check all this out before you arrive - have you had your admissions letter? there should be a phone number or some way of asking.
Also, we found that cameraderie amongst other parents was strong, people chatted, helped each other by fetching things from the cafe etc.

Are they definitley doing the MRI under GA rather than sedation? I have no idea what a dehydration test involves, but it sounds as if if it is pretty hard going - could your Mum come for that rather than the MRI?

I can only suggest that you take loads of books to read, and things like letters you have been menaing to write and haven't got round to! Maybe you could do your Xmas cards early!

GOSH are fabilous, so hopefully they will get to the bottom of your DS's problems.

Do they not have fold out beds? that's what Kings have. Hardly luxurious, and the din can be incessant. Take ear plugs and an eye mask. I hope you will be lucky and get a family room, but I think they sometimes keep these for v poorly children having big surgery etc. We got one the first couple of times because Ds was under the age of one, and not after that!

thanks lisa

hi blu, yes ive had his admission letter, what ive read about the ward is off the GOSH website. it does say theres a kitchen to heat food, so ive bought a lot of pot noodles and microwave rice dinners.

the scan will def be under GA as when our local hospital tried sedation before, they gave him the most a child of his size could have and it still didnt knock him out,stubborn little so and so so he went to the everlina kids hospital for the scan but we never got the results back off our local hospital hence GOSH wanting to redo it.

the dehydration test is witholding fluid to see if he can concentrate his urine. hes on a drug at the moment that stops his raging thirst so when they stop the drug and hes not allowed to drink he will really suffer badly, think it last about 6hours minimum. without the drug he HAS to drink every half hour to quench his thirst so it will be awful for him and me.

i have asked his father to be at hospital for that test (we not together), so im hoping he can be there to help distract ds

ive already got the ear plugs

Yes, the heat-up simple meals are a good idea - they won't feed you, only DS and cafe food becomes very expensive! take fruit and healthy nibbles, too. Is yours one of the wards where they have bedside internet access for the kids? I took my small cafitiere and some fresh coffee with me as i simply can't manage without!

I wonder if it is possible for them to do the dehydration over night? I know hospitals generally put children at the beginning of the day's operation lists so that the starvation can be overnight - is this something you could ask? Poor thing - it does sound tough.

I wonder if any MN-ers work close to GOSH, and could pop in with supplies and for some company? 5 days is a long time - I will never forget the kindness of one of DPs friends who arrived unexpectedly with a fantastic tasty plate of homemade satay chicken and tasty salads!

brandy - one suggestion from an old hand at hossies; take a pillow for yourself, they are generally like gold dust.

Good luck.

thanks blu

dont know about bedside internet access, be good if there was!

the dehydration test involves taking blood/urine/weighing hourly so done during the day

I know that G.O.S.H have fantastic facilities for parents through Ronald Macdonald house (showers, rooms for long term stays for families, assistance with meal vouchers, family support workers etc) The nurses and health care assistants will be really supportive and help you with the home from home comforts you need. Just don't be afraid to ask and the PALS (patient advice and liasion service) will be able to answer any additional queries you have. Make sure you do take your own pillow though- good tip !!! some snacks to keep you going ( although there is plenty of shops nearby and good cafes and a shop in the hospital) and lots of familiar comforters and amusements for your little man .All the very best for you both.

saggermakers and alfie, thanks for reminder about pillow!!! only problem being,going up on the train so space limited,might take sofa cushion as a substitue for my big comfy one

alfie, thanks for all info about support up there, dont feel quite so nervous about it all now.

must bath the monster now, thanks girls

Hello Brandy how are you? It is a long time since we last spoke.

I am glad things seem to be moving on for your son. Great Ormond Street is a wonderful hospital I know some of the nurses there and really you are in the best hands.

My dd went into hospital for tests and then a major op when she was two and although at the time it was hell ti sorted her out.

Part of your problem has always been that no one properly believed you or gave you a diagnosis so at least things are getting sorted now which is a major blessing. Hopefully although this will be hard it will sort some stuff out and at last you are being listened to.

Brandy, a friend of a friend's little boy as exactly the same condition as your ds and was treated at GOSH. He's doing really well now, from what I hear - tGOSH were fantastic.

also, my niece spent a lot of time there as a toddler - will ask my sil for any tips about staying there.

Hi Brandy

I hope all goes well with DSs tests.

Just a thought about no hair washing. Whilst in hospital after a c-section I didn't have the strength to wash my hair...I used Batiste spray. Don't know if you've heard of it but it's a dry shampoo that you spray into your hair. Not ideal I know but takes away the greasy feeling. I bought it at Boots here

is that you C? is this little l we are discussing

Brandy, I am sorry I have not read the whole thread, but I can tell you that GOSH is by far the most outstanding place and even if you have no family there with you you will not be on your own. The staff are wonderful and will do everything in their power to make it as easy for you and your child.
Good luck.

hi glitterfairy ive been too busy on dating sites lately! hope you are all ok and yes it is so nice to be finally listened too.its taken 2 and half years so its quite a relief.

anotherembarasingillness (long name!!), good to hear about another child with the condition because its so unheard ofalthough there was another mner with a little girl with it i think

ange,thanks for tip about dryshampoo, anything is better than nothing, i wash my hair every morning just to feel clean

hiya allie, yep its me, hope you and the kids are ok

thanks for best wishes kimi

i should have posted on here a week back after i was told he was being admitted,id forgotten how supportive you all are