It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Friday, 26 March 2010

Well, looks like the 2ND email worked

(fingers crossed behind my back!)

The CLN has just rang, seemed like they knew I knew I was being fobbed off..

they are admitting Ethan MONDAY to the local ward for IV antibiotics, and surgery at the end of the week barring any emergencies - which I honestly wouldn't hold against them!

8am Monday morning at Treetops for us then.

keep your fingers crossed x

Wednesday, 24 March 2010

Spoke to soon :( Welcome to the flippin NHS

Ethan was spiking a temperature over the weekend and turned out he had an ear infection. We took him to the out of hours gp who said his ear was dull & prescribed us a very wrong dose of amoxicillin (1500mg per day! :-0 !)) Got it checked and he is to have 125mg x 3 daily.

So of course I had to ring and check it with the Freeman and they said they wouldn't take him in with an infection. But I was to ring today and tell them how he was.

It had helped & he was 10 times better Tuesday and today, but they wont take him in for his IV antibiotics while he he is still on these oral antibiotics!! how backwards is that?!

I mean this will be his THIRD course of the same antibiotic, so as far as I can see it - he needs these IV antibiotics to clear his bad chest that he has had since November!

For starters we don't know how long he is to take them for, so I rang treetops the local kids ward and they said they would be happy with him just having 5 days with an ear infection especially as he is clearly much happier. They couldn't understand why the Freeman wouldn't take him in for his IV antibiotics.

The CLN rang back and said they wont discuss him again until next Wednesday at the planning meeting.

I wasn't happy, if they were planning on taking him in then I don't see why they need to wait a whole week just to discuss him again.

Anyone else starting to think they are taking the micky, and they never intended to take him in in the first place!! I cant ring them again cos I will seriously lose the plot.

Would the secretary know whats going on? I'm so tempted to ring and ask if they had a date in the first place!

I am soooooo angry with them ..I just feel like they keep moving the goal posts.

Oh and Deans mum & dad go on holiday 24th April for 2 weeks so I'm quite literally stuck if we aren't in and out by then. SO by my workings we need to be in by the 1st April to give them the 3 weeks they said. Or I have no one to look after Josh (my family live a 2 hour drive away, but would gladly have him).

I explained this to the cln and she just replied they have no facility for siblings... well tough he will have to come.

Wednesday, 17 March 2010

We got the go ahead!!

We saw the respiritory registrar today, she said his chest was clear - I still disagree.

I had a melt down on the clns (in the middle of outpatients!) and got told off - but they did give me some news.

we are to go in at the end of next week for IV Antibiotics & surgery the week after.

They said my diary just showed everything that is normal for a child like ethan prior to surgery - I feel better knowing that they understand and obviously that I got my go ahead! I suppose that I felt fobbed off as I had lost my trust in them and thought that as they werent giving us a date we werent going to be in for ages and that it was as if they didnt beleive me,.... she wanted to pinch my sats monitor! but seriously she said I am making myself ill - which I know so I am going to make the effort not to panic all the time, breathe more and paint lol x

Thanks for your help and prayers, and if anyone knows a way of updating blogger via mobile I would appreciate some instructions so I can keep you all updated!! ... x

Sunday, 14 March 2010

No Further Forward

I am going to end up having a nervous breakdown I can see it coming. I rang on Friday. Jacqui (the cardiac liaison nurse that told me to ring her on Friday) wasn't in. So I rang Paddy (the other cln)and she said that she didn't know why I was told to ring back Friday. Anyway she said its going to be weeks & weeks!

She also said they wont touch him while he has a bad chest - I flipped as he has had it since November that's why he is having 4 days iv antibiotics before the op. what the hell else am I supposed to do.

Apparently they are re-locating ward 23 to ward 18 while they do refurb, Mr Hasan is away part weeks for the next 3 weeks and they are seriously taking the mick.

Paddy got an earful, for which I rang her back and apologised but I think she knows I'm at the end of my tether.. I'm just sick .. honestly I've had enough.....

Ethan has eaten eaten a packet of crisps and his cereal all day has no appetite, his cough is worse as is his chest even with two weeks high high dose antibiotics. 500mg per day (targeted) - its even worse today!

Oh, and the community nurse tells me to go through the GP when we have open access... sorry don't mean to rant!! x He has black hard poo today?? what is that all about??

To top it off, I took Josh to the GP re his constipation today and he has referred us to the paediatrician. I had decided I was going to speak to the gp and try get some tablets or something so tried to explain how I am and he said make an appointment of your own.. 2 weeks wait for me, to which I will probably end up cancelling as I don't have time - fgs I have been for other issues let alone anything else!

I just want to cry constantly x AND BREATHE!

Paddy left it, she was going to speak to Dr Spencer (respiratory) and Dr O'Sullivan (cardiologist) and ring me on Tuesday. SO lets see what they say then,

Thursday, 4 March 2010


Firstly, I wanted to say thank you to those of you that are keeping us in your thoughts. I find I am writing more and more - its quite theraputic.

I found this quote yesterday - " Finds her strength in her son's laugh, her happiness in his hugs & kisses and all the faith she needs to keep her going in his beautiful eyes." its so beautiful.

Ethan is so tired. He needs his op soon before he ends up as an emergency.

I don't pray. generally. But last night I got so worked up I felt the need to.. I don't know whether its just that I released my tension or divine intervention but I feel lots better, stronger today.

I left it as long as I could before I rang the cardiac liaison nurse this afternoon. Mr Hasan (the surgeon) is away until next Thursday so I'm to ring on Friday and hopefully we should get some idea of when he can go for his surgery.

I mentioned about his heart looking huge on his xray and she said it was and that he is urgent. Now I must trust that she is being honest in what she says and not fobbing us off!! Please keep your fingers crossed

Monday, 1 March 2010

Test Results Back..

Oh I feel sick, Im sick of this waiting. I rang today to find out if anything grew from the samples of yuck (lol) they took. They have grown the same bugs that he has struggled with before H-Influenza and Strepptacocus Pnemonae. Not sure of the spelling tho!

So here we go again with another high dose of antibiotics, amoxicilin. They are still planning to admit him for IV antibiotics for 5 days before the operation.

The cardiac liason nurse is going to speak to them on Wednesday at the meeting to hopefully get a date.

He is tired now, knackered. He NEEDS this operation but I still feel like a train is hurtling towards us and there is nothing we can do to stop it.

And its not even as if this will be it - one last op. to 'fix' him. We have to endure this again 2 or 3 more times before he is 20 according to the surgeon.

Sorry, I don't mean to feel so sorry for myself!! I just feel as if we get on an even keel then here comes the damn train again - Im so angry. Im so sad. Im so angry with life. I love my son - I dont want to hand him over to anyone.

Update on AlexaPlease pray for Alexa she now has complete heartblock and needs more surgery tomorrow to give her a pacemaker.