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.

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,


  1. So sorry you are having to deal with this. I will be praying for you guys!


  2. {{{HUG}}} I am so sorry that you are constantly getting the run around. There is nothing worse than to have that happen on top of already being stressed out.

    Hang in there and know that I am praying for all of you!

    Keep fighting!!

    Stef, Ryan, Wyatt and Logan

  3. hey there..i know that words really can't help but know that an invisible 'art friend' is sending you a hug and a paint brush to lean on! Keep writing it down..keep painting it...keep breathing..

  4. Here is the link to the Rastelli info you asked me for.



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