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?

Thinking of you all, I can't imagine how hard this is for you. I hope his op goes OK and he's on the mend soon.

Glad you've got some time at home before going back in next week.

Gives you all a chance to recoup, rest & get ready for going back in. Take in fave toys, pictures, DVDs, any get well cards + blu-tack!

Accept any practical offers of help, food for freezer, visits in hosp (bearing appropriate gifts of course!), etc.

DS2 had brain surgery to remove a (benign) tumour in 2009, he has done brilliantly ever since. The surgeon was amazing, the consultant & the nurses too, the food was awful!! This was GOSH, ie only for children but honestly you could get chips every day but no pasta all week!

Glad you have got a few days at home to get sorted and that he's now having the treatment he needs.

Practically now you have a little time to get more prepared for going back in, I usually take tracksuit bottoms to wear at night, get some sticker books/colouring books, I have a drawing board (modern etch a sketch type thing) that is handy as he can sit in bed and draw, a portable DVD player would be really handy, I find the hardest time is when he starts to feel a bit better and dosen't want to just sit in bed anymore but you don't want them tearing around making themselves worse or he may not be able to get out of bed, so anything to keep him amused would be good.

Food is our hospital is terrible, so I used to get OH to nip to the canteen, you might find they will provide your meals if you're breastfeeding, although not sure as your DD isn't the patient, but might be worth asking if it looks edible at all.

You have a very good point about child toilet seats, I don't think I have ever seen one in the childrens ward when he's been in.

DOn't forget to take care of yourself as well, will be thinking of you.

Oh and shirts/pj tops with buttons (Primark are good for cheap & cheerful ones) so you aren't pulling things over his head/bandages.

Just thought, snacks which don't need to go in the fridge are handy, things like breadsticks, raisins, fruit, plain biscuits etc.

Our childrens ward are supposed to have fruit available but it is usually either really wrinkled or very unripe, very green bannas etc., so I usually get OH to bring a few bits in.

Oh and shirts/pj tops with buttons (Primark are good for cheap & cheerful ones) so you aren't pulling things over his head/bandages.

Very good point, I did have to cut a PJ top as I couldn't get it past the canula.

Wishing you all the best for next week x

(DS2 was wired up with invasive electrodes for a week pre-op with a 'ponytail' of wirse so couldn't use over the head tops at all)

Not everyone would agree with this but, think about taking photos, even of the bad days. When it's over it will all feel surreal and dreamlike, sometimes it helps to look back at those photos and remind yourself what you & DS have been through.

That's a really good point Justkeepswimming (and a great name). I am just about to go through DS's wardrobe to sift out the things he has grown out of. I bought him loads of button shirts for post-op - what size is your DS Edgar? I can post you stuff if it would fit - I'll be sifting out the age 6-7-8 stuff. Shame I just got rid of loads of PJ bottoms as I would advise disposable everything.

And I absolutely agree about the photos. It will not only help you, but will help him too. I came across one of ours the other day, 6 months later.

thanks for this thread - Dh had a read and agreed that he ought to get away from the ward more/ have more time 'off' (he has been nursing DS almost non-stop whereas i have taken time away to look after DD2)

it is good to hear of other people who have got through it. Especially as he must have been sick a long long time - our HV popped round and told us that if we'd said our toddler was being sick and falling over she'd have told us to sod off and stop being so PFB. His tumour grew very big in that time.

Ok - we have DD1 at my parents house. she has been exposed to chicken pox so we are keeping her away for now thouh i think she's getting a bit scared and unsure about what's going on.

she normally has both off us around most of the day. - Any advice on how to handle this? She is going to nursery as normal. I have visited her and shown her pictures of DS waving at her.

thanks to the joys of the world widweb Ds is being prayed for on three continents :)

Do take photos - it really helps the child to process it later on - take lots - you can weed out the really bad ones. DS often goes over photos of his birth (v prem) and numerous hosp visits and big appts. It helps him to talk it through and gives us a good intro into why he finds certain things difficult or why he has to do things that he doesn't want to (physio etc!)

Good luck.

I dont know if its possible, but when DH was in isolation his work brought in a laptop and we brought 2 webcams so the kids could see him.

I can lend you the 2 webcams if its any help at all?

I agree with the photos. When the nurses asked me if I had taken photos when DS was first ill I thought they were mad but they explained how they can help afterwards and they really have. The photos on the CPAP make me realise how far he has come when having a bad day. DS actually did his first smile when he was in hospital at 10 weeks old and I have a cracking photo of him with his nasal specs still in with a massive smile :)

Hope everything goes well with the future treatment x

I hope your DD1 doesn't end up with cp right at this time. Definitely explain as much as you can to her, we had DS1 who was only 2/3 at the time of DS2's op/lead-up so it was all in simple terms:

DS2 has a poorly bit in his head, the doctors need to take it out and he needs to stay in hospital for a while while the doctors look after him.
Luckily he was happy enough to stay with grand-parents so we didn't have to worry about him.

Is it Tuesday you're going in?
Hope you are having some chilled out days (as much as poss) at home before the madness starts (again).

Thought you might find this helpful reading - well actually DH did when i was telling him about your DS. Depends if you're an info person or not.

Make sure to write down any questions you have before Tues - they should sit down with you beforehand and go through everything so you will probably cross off most of them before they get to the 'have you any questions?' bit.

Make sure you know what to expect afterwards.
DS2 came back up to the ward - but to the bigger room right by the nurses station not the side room we were in before.
He was obv still knocked out for a bit but came round remarkably quickly (we thought) - they had to do obs & tests on him every 15mins i think it was for a few hours. So very hard to relax or rest.

Also of course a big bandage but in our case that was an improvement as he had no wires from inside his skull as he had beforehand.

And very puffed up face.

Hi Edgar, sorry I haven't read all the thread but I know what you are going through. DD was diagnosed with a malignant brain tumor in 2009 when she was 2. DS was 5 months old at the time and fully breastfed. I had to switch Ds to bottles as my supply had dropped through stress and not eating properly but DD then started breastfeeding.

She then needed 13 months of chemotherapy and breastfed twice a day all the way through. It was good for me and her as some days she ate nothing but at least I knew she was getting something.

Feel free to PM me with any questions as I know how difficult and lonely it can be.

I hadn't seen this thread Edgar. So sorry for your poor wee man having to go through this, and for you too. Sending you all lots of positive vibes and best wishes, soon this will be a memory :)

ok, DH is packing camera. Have got him some beach shirts (he is size 3-4 max!)

DD1 has been told DS is sick, and we are taking him to get better. I get the point about 2+2 = 5 - knowing her there is a danger she'd think it was because of sth she'd done. She had a temperature yesterday though so ..no chances taken yet.

DS has a major appetite now - steroid fuelled perhaps. has had a cup of EBM as well as oodles of fish finger sandwiches. He's had diahorreah but isn't dehyrdrated, i just hope some of the food is getting on to his skinny ribs.

DD2 is being very hungry.

my personal OFRS has got -

light clothing
books
laptop complete with mobile network(thank you sister)
washing powder
toys for DD2 and soft toys and books for DS
decent quality wipes

i have resisted the urge to buy lots of stuff for DS that he will be too ill to use, though may succumb when he is out of hospital. One of the Mums on the ward gave him a gold balloon which he's been clinging to since - very kind. will get more balloons after the fact :)

My coping style = cope with today and worry about tomorrow later. Dh has been driving me mad with research..he needs to know the full picture. He knows though.

What age is your DS? With us a portable dvd player for dd was a lifesaver. Also a nintendo ds was handy to have.

Also make sure that you get the nurses to keep the morphine on for at least a day. With dd's first operation they took off the morphine after 3 hours and gave her only capol for the pain. The next operation it was kept on for 24 hours and made such a big difference to her recovery time.

Phone & phone charger - if either of you have an iPhone, stock up on some kids apps beforehand.

Also - 2 days after DS2's op the surgeon said we could go home, yey we thought....he then screamed & shouted & wouldn't sleep for about 48 hours. We rang them & they said it was a reaction to the GA & because he'd been under for so long (much longer than say a tonsil op). Now I know why they sent us home!! Be prepared for this!

Also, the people in the room next door had to come back in as the wound got infected, keep a very close eye on the wound, however squeamish you are.

We also got some photos/printouts of favourite people/tv characters & laminated them. I hole-punched them and took in some string and we decorated his cot with them, he wasn't always in the mood to look or care but we felt it might have helped some of the time.

ANd so fab that you can give him EBM, i had stopped feeding DS2 just a couple of months before his seizures started, really wish i'd carried on, would have been such a help, to us both.

did you want to borrow the 2 webcams?let me know :)

Justkeepswimming - thats a great idea with the pictures. We might have to go abroad for a couple of months for more treatment and have to leave ds with my mum. I think i'll do that for both of them. Thanks

Aww shucks Shirley, thanks :)

DH has just mentioned something i've not seen on here yet - Rescue Remedy, & lots of it.

We both had a spray bottle each and used it liberally. I could tell when it wore off for me as my foot would start that jiggling thing, like when you've been kept waiting too long. Time for more RR :)