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?

Edgar I'm so sorry to hear this :( It's good that it's been found though and I'm sure he'll get the treatment he needs now.

Stay strong xx

So sorry to hear this, Edgar.
Will be sending good thoughts to you and DS.

x.

Edgar, what dreadful news, I cant begin to imagine what you must all be going through.

Having said that, my DD spent nearly 2 months in the neo natal unit at St Georges so am unfortunately all too familiar with the hospital.

make sure you get the parents parking permit which lasts a week at a time and allows you to park for only a few pound per week rather than the usual exhorbitant prices.

the car park fills up very quickly so if either you or DH are driving in for a visit, try and get in before 10am or over the lunchtime period as you are more likely to find a space

if you run out of cash there is a cashpoint in the student part of the ground floor ie if you were to come in the main entrance keep walking towards the lifts and then straight over the corridor if that makes sense

I don't know if you live locally but if you need a break from the hospital its really not that far to Wimbledon where there is a huge variety of places to eat and drink - the streets around the hospital are woefully lacking in anything! I know it might seem strange thinking about your stomachs at a time like this but sometimes you do just need a break.

DD had surgery at St Georges and we couldn't fault our surgical team. One thing we did find though was that when things were serious the medical teams were very good at keeping us up to date but when DD was 'stable' there could be days go by when we weren't told of any 'plan' and were left very much in the dark. make sure you don't let this happen to you as the not knowing can be very hard to deal with

make sure you get yourself some very good moisturiser as you will be washing your hands several times a day and they will end up raw.

there are expressing machines, sterilised kit, storage bottles and freezers etc if you need to go down the expressing route to keep up your supply.

I think thats about it for now but will joy down any other thoughts if I have them

good luck, I really hope that things have been caught early and everything goes well for your DS

Goodness, I'm so sorry to hear about your poor DS. Take care of yourself, and your family, and try to stay strong. Xx

Oh Edgar. I've just seen this thread . My thoughts and prayers are with you all.

My thoughts and prayers with you all.

I can only reitterate what others have said about hospital stays, make sure you do look after yourself as hard as it can be at these times. Don't be afraid to cry or anything else when it gets to much - I have always found the staff are a great support for parents aswell as the child. I have spent many an hour sat with nurses pouring my heart out - they are used to it!

I always keep a note pad next to my bed for the times (normally in the middle of the night) I think of things I need to ask the staff.

Edgar - I wish you strength to cope, patience to tend lovingly to your child through a difficult time and hope to know that he is being cared for by skilled caring competent professionals.

Edgar so sorry for you and your poorly DS. hope the prognosis sounds scarier than it is and treatment will be swift. lots of great advice above including decent food and drink, earplugs, charger for mobile, lots of change for car park until your permit comes through/coffees/vending machine in the middle of the night/ picking something up from the shop, handcream, taking breaks, getting a parent's parking permit and making sure you have enough entertainment type stuff to keep you all going and distracted. would also second the notepad to write down those questions that always seem to come in the wee hours and to have some little gift/book/magazine to cheer DS up when things are horrid.

also - can't remember if this has been mentioned - one of those evian water spritzer sprays to keep everyone refreshed - it can get so stuffy on the wards, especially if you are in your "own" room.

wishing you, DH and especially your DS well. x

Thinking of you all Edgar xxx

No advice but thinking of you and your little boy.

I'm so sorry to hear about your ds, I sincerely hope he is on the road to recovery soon.

Here are my tips for surviving your hospital stay:

You are your ds's advocate, don't be afraid to get involved and don't leave it all to the medical staff. They will want your input into his day to day condition. See yourself as part of his treatment team.

Keep abreast of ds's treatment plan and any drugs he is prescribed. That way you can chase up if necessary.

Always ask questions if you don't understand or feel you are being fobbed off. You do not need to be medically trained to understand most treatments. The Dr's should be able to give you analogies that help explain. If you understand you feel more in control and more importantly you can question/query them.

Don't be afraid to be pushy (with a smile of course!), you sole interest is your son and his well being.

Keep bf'ing if you want to and there is no need to stop. Nevermind the nutrition, the comfort and normality it will give you both is unmeasurable.

You may receive silly comments/questions about bf'ing: bf'ing again? How much do you think he drank?. Ignore them, most Paed. nurses and docs don't really understand bf'ing.

If ds is having a good day ask the doc's if you can both go for a walk around the hospital or outside. You don't always have to be on the ward and a lot of the time it doesn't occur to the doc's to say 'it's ok to spend some time away from the ward if you want to.'

Take turns for the night shift with your dp. You need to rest too.

Talk and cry with your dh. You will probably find you are both down and up at different times so can support each other. Remember to cuddle and kiss each other.

I think everyone else has covered the practical stuff, so I won't say it all again.

Always have hope and stay positve, no matter how hard it is, how tired you are or how poorly ds may be. Always have hope and take each day at a time. Concentrate on the now, not the tomorrow, it's too exhausting to think about the future.

Sending you all healing and strength vibes xxx

Sorry to hear the news edgar, sending thoughts and prayers (if apprieciated).

edgar - sending best wishes for you and ds xxx

xxx

Thinking of you, Edgar. Getting a diagnosis like this sucks . But I can say that paediatric oncology and haematology wards are usually the nicest places in a hospital. It's like a big family, everyone is so supportive.

Children bounce back so fast from things that would knock an adult off their feet for weeks, both physically and emotionally.

belledechocchipcookie - I would be surprised if it is neuroblastoma with those symptoms. And I hope it is not, but this thread is not the place to go into that. My daughter has been fighting this for almost 2 years now.

Practical help - get a diary just for treatment. Write down every medicine given and what time, any adverse reactions, all appointments etc, ward phone numbers, gp numbers, nhs number etc. Expect all appointments etc to take at least 3 times as long as they should, and make sure you have something to eat and something to do/read etc whilst you're sitting and waiting.

Life changes forever after diagnosis, but not neccessarily for the worse. PM me if I can be of any help Edgar.

So sorry Edgar

Can only echo the excellent advice given by the other posters.

Be kind to yourself

Sending positive vibes/luck/hope for you

Does anyone have any idea how old Edgar's DS is?

Have you any news Edgar? I am still thinking of you and your DS.

Edgar, sending lots of prayers and positive vibes your way x

Buda I think Edgar's son is 2.

Thinking of you Edgar, hope everything is going well, let us know how he is whenever you get a chance.

I've only just caught up with this. So sorry to hear this, but pleased that your son was seen quickly and that treatment has started. My father is currently in hospital with an undiagnosed brain condition, and I know how worrying it can be.

My love and prayers to you and your family, Edgar.

Thanks skydance. Poor wee thing. Fingers crossed it will be sorted quickly and he will be home and well and back kicking that football around.

Edgar - I am sahm and live within easy reach of St George's. Please pm me if I can do anything at all to help you.

So sorry to hear about your ds, thoughts and prayers with you all. xxxx