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Author Topic: Reece goes away for Christmas. Again.  (Read 400126 times)
The_nun
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« Reply #960 on: September 17, 2009, 03:15:46 PM »

Test revealed what we suspected,the line is no longer working, it has split.

After much ado a surgeon over in Manchester has over ruled the decision to await Antoninos return and wants to attempt to put a new line in in the morning. Stacey is anxious but I am confident as this surgeon has operated on Reece before and made me feel very comfortable way back when Reece was quite poorly. Reece was a mere 12.7 this morning even though he is eating shed loads, he just is not absorbing, hopefully once this new line goes in we will be able to give him the dreaded Lipid, ( Lipid is the liver killer and we have not been able to get it to run through the line in Reece's arm as the vein was not big enough so he has just been having the Vamin). So off he goes to use one of the last 2 veins, not good but what choice have we.

I personally feel that although Antonino is a superb surgeon we have come to a brick wall on the after care, IE getting Reece to absorb more. It always seems like as soon as Reece starts to falter they try to say it is something we are doing wrong, this has to be because the op Antonino did on Reece, the Bianchi, is almost frowned upon, so he has to be seen for it to be successful. We cant be messing around like this, we need to find someone that has had success doing bowel lengthening ops on similar cases to Reece. One minute we are told that Reece is the only one at an older age that he has done it on the next oh no he has done it one another of a similar age, some times we don't know our arses from our tits.

Tomorrow Stacey is going to ask for the medical notes that Boston want to see. They will  take a look and see first if they think there is anything at all that can be done then there will be the desision as to whether we go public and try and raise the crazy amount that it will no doubt be. I remember a while back when Reece was really poorly we got introduced to a lady that raised public awareness by way of magazines, tv etc, not sure if it will still be an option now but lots to look into. All I know is we have to try every avenue we can before he is left with no veins. I recall a long time back being told that once Reece is down to his last vein we will need to start looking towards the double transplant again,trust me , we really do not want to go there.
« Last Edit: September 17, 2009, 03:18:36 PM by The_nun » Logged

The_nun
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« Reply #961 on: September 17, 2009, 03:17:43 PM »


Hope the lad is a little better today Mo - and you.

x

A lot better thanks, well a lot stronger than yesterday if that makes sense.
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« Reply #962 on: September 17, 2009, 03:21:04 PM »

Thinking of you all,sure he will be fine he's a very inspirational young man.Take care
« Last Edit: September 17, 2009, 03:56:24 PM by mondatoo » Logged
tikay
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« Reply #963 on: September 17, 2009, 03:42:17 PM »


Hope the lad is a little better today Mo - and you.

x

A lot better thanks, well a lot stronger than yesterday if that makes sense.

Yes, I understand, I think.

So many dilemmas, & you cannot afford to get one wrong. I don't envy you.

Let's not get ahead of ourselves, but if it ends up being a Boston thing, & money is needed, this - blonde - is the place to brainstorm the problem, & see whether we can find some means to raise the cash.

You'll be astonished to know that I've had a bunch of PM's today from different blondes all offering to help with any fund-raising needed. They can do things, or help raise awareness, in both cases with fund-raising as the goal.

I know a few folks who are not regular blondes who would help, too.

So let's hope you can find a result quickly, & at home, but if Boston is the only, or best answer - well don't be giving up on money grounds. Start here, & lets see where it goes.
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« Reply #964 on: September 17, 2009, 06:53:41 PM »

Thoughts are with brave Reece, he's such a strong willed little soldier. X
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The_nun
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« Reply #965 on: September 18, 2009, 05:03:18 PM »

Ok so today has not gone as planned. On arrival at Manchester hospital Stacey was told oh, we did not know he was coming in. Somewhere along the line communication has broken down, it wont be the first time,far from it in fact. So the hunt then goes on for his results from the tests performed yesterday at Halifax, not arrived it seems, or has the changed plan to operate. So Reece was given food after being starved yet again for no reason, this sure does help his condition. Stacey was then left with no further information as no one , it seems, could get in touch with the Registrar that held the plan. We decided if nothing was being done today he would be far better off at home, so that's it, yet another fk up ( sorry for swearing but am so bloody annoyed). He will once again be starved from midnight tonight with no drinks after 06.30 tomorrow and surgery should take place around midday. As if the lad doesn't go through enough  human error, or is it incompetency? has to add just a little bit more on top.
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« Reply #966 on: September 18, 2009, 05:11:03 PM »

Ok so today has not gone as planned. On arrival at Manchester hospital Stacey was told oh, we did not know he was coming in. Somewhere along the line communication has broken down, it wont be the first time,far from it in fact. So the hunt then goes on for his results from the tests performed yesterday at Halifax, not arrived it seems, or has the changed plan to operate. So Reece was given food after being starved yet again for no reason, this sure does help his condition. Stacey was then left with no further information as no one , it seems, could get in touch with the Registrar that held the plan. We decided if nothing was being done today he would be far better off at home, so that's it, yet another fk up ( sorry for swearing but am so bloody annoyed). He will once again be starved from midnight tonight with no drinks after 06.30 tomorrow and surgery should take place around midday. As if the lad doesn't go through enough  human error, or is it incompetency? has to add just a little bit more on top.

Bear up Mo. He'll sense your (very understandable) angst, you know he will.

Good luck tomorrow, too.
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« Reply #967 on: September 18, 2009, 05:22:12 PM »

And breeeeeathe.  Hang in there Chicka.  I know today was a pain in the arse, but hopefully tomorrow will run better.  Just try to kick back and relax for tonight as there's only so much you can do and you'll need yer wits about ya tomorrow.  xx
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The_nun
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« Reply #968 on: September 18, 2009, 05:43:36 PM »

Ok so today has not gone as planned. On arrival at Manchester hospital Stacey was told oh, we did not know he was coming in. Somewhere along the line communication has broken down, it wont be the first time,far from it in fact. So the hunt then goes on for his results from the tests performed yesterday at Halifax, not arrived it seems, or has the changed plan to operate. So Reece was given food after being starved yet again for no reason, this sure does help his condition. Stacey was then left with no further information as no one , it seems, could get in touch with the Registrar that held the plan. We decided if nothing was being done today he would be far better off at home, so that's it, yet another fk up ( sorry for swearing but am so bloody annoyed). He will once again be starved from midnight tonight with no drinks after 06.30 tomorrow and surgery should take place around midday. As if the lad doesn't go through enough  human error, or is it incompetency? has to add just a little bit more on top.

Bear up Mo. He'll sense your (very understandable) angst, you know he will.

Good luck tomorrow, too.

He is with his mom tonight so he wont pick up on my vibes at least, but has done in the past if I'm honest, he's a clever little fella. Only thursday gone he told me I look at him with " them eyes" when he wont eat his tea. Oops, I don't think they are angry eyes just omg what am i going to get him to eat tonight sort of eyes.
« Last Edit: September 18, 2009, 05:47:32 PM by The_nun » Logged

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« Reply #969 on: September 19, 2009, 12:48:38 PM »

Day 2of starving him in hope he gets a slot. Major case in there now that will be approx 3 hours, then break time then Reece.
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« Reply #970 on: September 19, 2009, 01:41:27 PM »

fingers crossed he gets seen today, and that all goes well xx
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« Reply #971 on: September 19, 2009, 03:31:39 PM »

Very. Grumpy, crying for a drink and food and still no sign of going down yet. 
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« Reply #972 on: September 19, 2009, 03:32:57 PM »

Bugger!
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« Reply #973 on: September 19, 2009, 04:25:49 PM »

If only this was not needed so much I'd have Stacey sign him out.
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« Reply #974 on: September 19, 2009, 06:01:23 PM »

I think if I actually wrote down on here how I am feeling I would get a life ban from the forum.

So without the swearing, it has just been cancelled AGAIN. So, no food since before bed last night, no drink since 06.30 this morning, tears and stress all day trying to explain why he can not drink with out telling him the truth as he fully understands all the ins n outs of theatre. His chosen bed tonight, in the middle of us, his wish is granted. still 12.8 today and doesn't appear to be too dehydrated, no chance of it tomorrow, so home till Monday.

I so want to never take him back to that bloody hospital, I just wish it was my decision and not Staceys, but she must do what she feels right, I cannot try and sway her if it all went wrong I would be reet up shit street. She has too much to think about as it is.


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