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Author Topic: Reece goes away for Christmas. Again.  (Read 400301 times)
The_nun
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« Reply #1110 on: October 06, 2009, 05:24:13 PM »

He's doing Ok. Still vomiting ever day, Antonino still has not called to chat about anything at all, let alone the balls up, this I find very annoying. The local hospital is sending a " nice " letter to Manchester to ask for case notes. We still have not been updated about the notes that Boston want. All very frustrating. Reece weighed in on our Scales Sunday at 14 kilos. Better than we expected, but worried about this vomiting. We asked for his bloods to be done to make sure the new line was not growing anything to cause the sickness and as yet the cultures are clear. Feels a bit stale mate at the moment to be honest. I try and push Stacey but you have to remember if I push too much and anything goes wrong it will fall back on me no doubt, or at least that is the way I feel. She is doing well at the moment, coping and everything, plus doing her college. It is easy to settle into a routine when things are calm but we mustn't forget, time is valuable here, due to his limited veins. A lot of people do not understand how " normal" if i can say that, Reece is. An awful lot of folk say to me , Does he understand you when you talk to him, I have to then go on to explain that Reece is an everyday child with a major underlying illness. It is so hard at times, no actually I will rephrase that, It is easy hardly ever.
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The_nun
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« Reply #1111 on: October 06, 2009, 05:28:08 PM »

And he is coping with full days at school very well indeed, only had to leave early once.
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tikay
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« Reply #1112 on: October 06, 2009, 05:30:32 PM »


Thanks Maureen.

So often you Post I don't know what to say. This is one of those.

Be brave, be strong, we are all here to help if we can.
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Harmony26
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« Reply #1113 on: October 06, 2009, 07:56:51 PM »


Thanks Maureen.

So often you Post I don't know what to say. This is one of those.

Be brave, be strong, we are all here to help if we can.

+2

xoxoxo
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« Reply #1114 on: October 06, 2009, 08:37:30 PM »



Be brave, be strong, we are all here to help if we can.
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« Reply #1115 on: October 06, 2009, 08:46:41 PM »

must be very frustrating not to have heard from Antonino.  Hope you hear something positive soon xx

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« Reply #1116 on: October 07, 2009, 02:15:53 AM »

as of recently i am having a hard time and don't know which way to turn or what to do next, but reading how hard young Reece fights everyday of his young life and how he has battled everyday makes me feel a little small and silly for feeling sorry for myself. The lad and your whole family for dealing with this are a miracle and i don't know if i could muster the strength you all manage everyday.
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The_nun
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« Reply #1117 on: October 12, 2009, 12:29:54 PM »

Still stale mate, still trying to get a referral letter, still being ignored, now been told today the letter has not been started and Antonino has gone away for another week and nothing can be done as he wants to see any letters that leave the hospital.  No second opinions now we are definitely trying to get him moved. Reece is still being sick every day, Antonino did not even bother to converse with Stacey after she called his secretary last week requesting an appointment. All very annoying.
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« Reply #1118 on: October 12, 2009, 12:31:36 PM »

  xx
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The_nun
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« Reply #1119 on: October 12, 2009, 12:34:00 PM »

To think that only last year he was saying we really do not want to be in a position where there is only one vein left, and yet here we are using one of his last 2 and still he has not even bothered to speak to us. GOSH I am mad today.
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tikay
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« Reply #1120 on: October 12, 2009, 12:39:57 PM »


Ugh.

This is getting close to criminal negligence Maureen. They can't keep procrastinating like this.
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« Reply #1121 on: October 12, 2009, 12:44:43 PM »

Been on the phone to PALS this morning, she said the only way now is to go through the local doctor, but once again this will take time, first he has to write to Antonino, then he has to write to Mr Puntis, all records have to be copied, Mr Puntis then has to read them and decide if he is the beest person to take Reece on. All this when we were thinking the ball was rolling along these lines already, but apparently NOT. I also mentioned Boston, to PALS, who said that she will request the notes to be released but once again this won't happen until Antonino and his useless secretary return from leave. Once he gets back next week I bet we are again forgotten about.
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The_nun
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« Reply #1122 on: October 12, 2009, 12:47:01 PM »

I should have done the notes for Kinbo a few weeks ago, but once we got the line in and Reece home it is so easy to try and live a little normal for a while, one just wants to forget how bad it got and move on, then this happens again.
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« Reply #1123 on: October 12, 2009, 01:17:51 PM »

continued strength and best wishes to all of you xx

I know how bloody frustrating it must be having to deal with the NHS, only last week i had an appointment with my consultant (who has gone missing for 8-9 months) they couldn't find my notes for 2 hours then got seen quickly by another consultant who umm and arred a bit and then after giving me my prescription I asked " has the virus cleared up yet?",     

 "oh yes came the reply that would have left your system ages ago"

"ORLY then why have you just prescribed me the medicines required to fight the virus?" durrrrrr

was then sent to hand a appointment letter into the ultrasound dept only to be told it needed to go to the x ray dept,so wobbled over there handed in said form told to take a seat,

1 1/2 hours later nurse asks why i am i here? " i told her and she sheepishly looks away, whispers to her mate then her mate comes over and says sorry you should have handed this letter into ultrasound GRRRRR FFS!!!!!
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tikay
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« Reply #1124 on: October 12, 2009, 01:48:56 PM »

Been on the phone to PALS this morning, she said the only way now is to go through the local doctor, but once again this will take time, first he has to write to Antonino, then he has to write to Mr Puntis, all records have to be copied, Mr Puntis then has to read them and decide if he is the beest person to take Reece on. All this when we were thinking the ball was rolling along these lines already, but apparently NOT. I also mentioned Boston, to PALS, who said that she will request the notes to be released but once again this won't happen until Antonino and his useless secretary return from leave. Once he gets back next week I bet we are again forgotten about.

Maureen,

This is too much.

We have to become a "noisy neighbour", & find some in Authority at the Hossie, demonstrate to them what's happening - what's not happening actually - & poke a few folks in the eye to wake them up. This just can't go on, week after week of them stalling for one reason or another.

Tom has called me about the situation, I said I'll get back to him later today, but for now, can you assemble a sort of resume of the story so far (not for the Forum, for the Hossie), or "cliff notes" as the kids call them, please? Get Dawn or Daniel to help, or give them the griff & they can sort of smarten it up into a sort of presentable document. We need to do that in the next 48 hours.

Once that's done, we need to go & bang on some doors. I'm happy to help with that, though I think Tom would be a better choice as # 1 Door-Banger.

None of this is to suggest you have failed in any way - but there is lots of those buggers, & just you, Stacey & Darren to take them on. A bit of extra muscle won't do any harm.

Can you work with Dawn, or Daniel (or whoever) to assemble the story to date, so that they can ponce it up into a Document we can slap peeps round the chops with?
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