Please please help with my son's never-ending illness

[Twunk]

I honestly think I am losing the plot.

Brief synopsis

DS2 has just turned 4. He was premature and had all sorts of issues in the first 6 months but has been healthy since then. He was breast fed until he was 3 and had normal run of short illnesses.

June 10th he developed a fever. His throat hurt and muscles ached. The fever lasted about 5 days. He recovered but looked pale and tired.

A week and a half later it came back - much worse. I took him to the doctor because he had a lot of pain in his legs and couldn't walk/stand. He had blood tests and I was called and told to take him to hospital, they thought he had leukaemia. Thankfully after a couple of retests they concluded it wasn't. He got better and started walking after 5-7 days.

One week later he got the fever again, but this lasted 48 hours.

Another week and he got it again. Stopped walking and hasn't done since. He fever lasted about 24 hours. This was the weekend before last. However, he's looked much better and been laughing and playing and crawling about. Eating normally too.

This morning he has another fever. I've made an appointment at the doctor but I am just at my wits' end.

His blood tests showed that it is probably a virus. He's anaemic (blood iron fine). Anyone had/heard of this? Please help I'm close to going crazy.

Thanks

Now that's talking...!

McDonalds has major food groups yes?

Are there good food options at the hospital?

I ask that in a practical - hope you are able to feed yourselves well at the hospital, rather than in a nosey blase way. Hope that makes sense.

Anyway, hope you are all asleep now xx

I had a quite palatable meal of chicken and chips, weird fruity salad, bottle of OJ and Greek yogurt with honey and walnuts and it came to €5.85. Bloody bargain. I'm coming here in future

Neither of us is asleep. Thankfully there are 24 hour cartoon channels...

Another hand-holder here Twunk. Spent more time than any mother should have to at GOSH when my DD was an infant.

For your precious boy you will find reserves of strength and calm that you would never have dreamed of.

Hope you both get some sleep soon.

Takeaway I spoke too soon...little sod woke up and for the first day in ages he demanded breakfast!

Is taking it's absence in reasonably good humor though.

Thanks cq - I bloody hate hospitals, though it's surprising how quickly you become institutionalised....

Always the way Twunk!

I have thought of you so much over the last few days. I'm glad you are settled in the new hospital and that it wasn't as scary as you imagined. I hope today brings more answers - once you have the treatment plan things really do get a little easier. It's incredible how quickly you get used to hospitals and all the medical stuff.

FWIW I think you are doing amazingly. If there is anything at all I can do, please just give me a shout. You are not on your own xx

I've joined a Facebook support group which I think will be good in the medium to long term but at the moment it's scaring the living bejesus out of me. Naturally people post when they are facing problems. At the moment I am in need of unbridled optimism.

So I'll not visit until I need it. Today I just need to cope with the visit to theatre.

In the UK do they have specific people employed to play with children? I think it's a bit more involved than that - they're involved in entertainment and development too?

I don't know about elsewhere twunk but there's a charity attached to Joe's ward which stocks the playroom and employs play staff (amongst other things). They play with the children but also take the role of explaining procedures to them through play like having a Hickman line, or an MRI scan etc.

So glad you are settled. It's a frightening time. Hope today goes smoothly.

Thanks MrsDeVere - they asked if they had them in the UK and I had no idea!

Nocake I hope you have a lovely day with DS.

And thank you everyone for your messages - I have read them all, sorry if I don't reply to every one.

God I need to eat.

twunk Before DS's diagnosis I was a terrible "googler" when it came to health matters but I made a conscious decision not to look up anything to do with his condition and only listen to his consultant and the doctors/nurses and trust that they will tell me everything On a need to know basis. Perhaps it's the wrong approach but it is all i can cope with at the moment.

I was doing so well until Sunday when I decided to look at a few sites/blogs. Although most of it was quite positive, the one negative story I read is of course the one that has stuck in my mind. So I am stepping away from the keyboard again, it really doesn't help me at the moment. Like you, I can only cope with unbridled optimism at the moment.

As you pointed out, naturally people mainly post when they are having problems so you don't really get a balanced picture. And once you have read something, you can't unread it. One suggestion I read in a help booklet, is that if you feel the need to look up stuff, get a friend to do it for you, that way they can shift through the information and edit anything 'unhelpful'.

Thinking of you and Alex.

You say there is a Ronald Macdonald house - they are lovely and if you can get a room your dh and other child would be able to stay too. You will be able to cook yourself a meal too, if you feel the need. It also gives you somewhere to go away from the ward which you may need for your own sanity!! Alex will need you to be strong for him so please look after yourself too.
And the ones here in the UK have internal phones to the hospital so you could be called back if needed.

just read the whole thread and wanted to add my support to you all.
i know how tiring scary and frustrating it is to have a child ill.

x

Hi Twunk,

Re staff in uk hospitals - as well as staff lots of other organisations go in to do special events. One if the theatre companies I work with do week long residential and include siblings too. They might do that too? Might be particularly good for M?

If you need anything googling just ask me, you know I'm always attached to Internet via at least two devices at any moment.

Thinking of you today. As others have said once you have treatment plan you know what's ahead and can start to take a breath. Xxx

Hi twunk. Hoping it goes ok for Alex today. Make sure you look after yourself as well. Xxx

yes they had play specialists at GOSH. they also had 'school' for the children who were long-term sick there, or needed to stay in for a long period of time. So kids who should have been in school in 'normal life' would be doing the curriculum at GOSH - with teachers going into the rooms to do regular stuff like math/english etc, I guess to make sure they don't fall behind or don't fall behind too much.

Obviously when DS was there, he was there for 2 weeks and even so, he wasn't in school yet, so what we ended up doing was going to 'nursery' which was set up so they had activities every hour - like craft, cooking demo etcetc. It was quite good as we had a structure to work round when we were waiting for the various appointments. The nurses were also good in that they would text my husband or myself whenever the dr wanted to see us, so we could always rush back upstairs.

(((((Nocake)))))) sorry but had to give you a hug just there.

He's gone in, much earlier than expected. I just about held it together when he was awake, but seeing him slump onto the table was just too much.

I'm waiting now for him to wake up. I'll get a call to go to recovery.

Oh Twunk, that must be so so scary and horrid. Best wishes for your little dude.

All hugs gratefully received!

It's awful isn't it. I held it together until the surgeon said "don't worry, I'll take good care of him". That just about finished me off. But before I knew it, the bleeper went and he was back in recovery, a little groggy but fine.

Alex will be back with you before long demanding a happy meal!

(DS's op to remove the tumour will be 6-8 hours I think - not looking forward to that )

I play 'worder' on my iPhone to kill time. It's a word game with 9 letters and you have to find all the words in it. It's not timed and there are no high scores so it's just relaxing and non-stressy.

I always think they should offer the parents a GA too....

6-8 hours is very long. I hope it's at the shorter rather than longer end.

He's here next to me and asleep in recovery. He needs to stay flat until 1.15 so the longer he sleeps the better. It's currently 12.55 here.

Just been given an ice lolly because I've not eaten.

And now we wait for the results

God I need the loo

Twunk just a post to offer thoughts and support. I think you are in a better place now you have a diagnosis. I know that sounds mad but the uncertainty of knowing your child is ill,bringing them to doctors endlessly is truly a hell on earth.
I have been there but our case turned out to be a very serious and complex pneumonia.
I know the diagnosis you got was not what anyone would want and there are no words which can describe the fear you must feel.

But your baby is getting treated now,instead of lurching from one bout of illness to a worse bout.

I am thinking of you and Alex and sending all the good vibes possible. You sound like a remarkable human being and your beautiful baby is lucky to have you to see him through this x.