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Old Feb 18th, 2016, 14:08 PM   51
Mrs G
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Poor baby, I hope she's had a good few days.

It's so important to look after yourself. I'm glad your sessions are helping. We often forget about us when we're trying to hold everyone else together.

Have you had any news today? As lovely as all the staff were I found it was easy to get forgotten if you didn't pester. One day when we kept getting bumped for a surgery slot and Tommy had been nil by mouth for almost 24hrs I just stood in the corridor and asked every single nurse and Dr that walked past when it was our turn! They got the message in the end, probably just to shut me up!!

Xx



 
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Old Feb 18th, 2016, 19:39 PM   52
Bumblebee2408
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No news again.... so I requested a meeting with her surgeons for 8.30 am tomorrow. I've had enough now this was done 10 days ago now we need an answer xx



 
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Old Feb 20th, 2016, 03:55 AM   53
Mrs G
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Hi
Good for you. I hope you get some news. I think you're more than entitled to a little foot stamping!

Xx



 
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Old Feb 21st, 2016, 18:20 PM   54
Bumblebee2408
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I foot stamped.... the surgeon was happy with her pH study results (they came back negative for any problems - however they did the test while on reflux meds!!)

Anyway they've said they want her to have another stretch on Tuesday..... when she's had 4 already at least and in 3 weeks time have a camera put down her throat (for the 3rd time) to look for problems.... they also won't do her gastrostomy in a hurry as she still needs a tube in her throat to help her oesophagus stay open

So we've at least another 3 weeks before they'll even make a decision for her 😦

Sad times but got home to see my big boy this weekend was sooo lovely xxx



 
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Old Feb 23rd, 2016, 16:48 PM   55
Mrs G
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Hey
It's crazy things take so long. What's their reason for waiting?

We're back in hospital, with bronchiolitis. 😓

Xx



 
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Old Feb 28th, 2016, 19:20 PM   56
Bumblebee2408
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Oh no MrsG. Hope little one is OK.

They keep telling us they want to make the right decision and her blue do's were getting less and less so unable to make a decision.... but due to their intensity they've decided theyre doing the aeortopexy...... but story of our lives we'very no set date for surgery yet.

But it's a step forward so fingers crossed xx



 
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Old Mar 4th, 2016, 17:16 PM   57
Mrs G
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Hey happy Friday. Hope you've had an OK week xxx



 
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Old Mar 4th, 2016, 18:43 PM   58
Bumblebee2408
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Hi MrsG,

Small update Jessica's dilatation next week has been postponed til the week after due to her surgeon being off again!! (How many holidays can one women have? )

Still waiting on a date for the aeortopexy. Still at nicu no move to children's as yet.

Ps Happy Mothers day for sunday 😃 I hope you have something nice planned xx



 
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Old Mar 5th, 2016, 02:28 AM   59
sethsmummy
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oh goodness hun it seems they like to do nothing but mess you and your poor girl around! I really hope they pull their fingers out soon!

mrsG sorry to hear your little one was in hospital with Bronch. how are they now? Bronch is blooming horrible xx



 
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Old Mar 5th, 2016, 02:55 AM   60
Mrs G
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Hi
Is there seriously only one surgeon who can do the op?!? Surely if she needs a dilatation, she needs it now??? I'd be livid. Tommy always had the same registrar but 4 different surgeons in the end. A specialist did the original constitution, then he had 2 different on call surgeons for the emergency dilatations and eventually the same guy for the last couple. Surely staff holiday isn't a reason to postpone her surgery?!? You must be climbing the walls Hun.

Tommy's doing ok. Had taken a while to get over the bronchiolitis. Still coughing lots. The tof cough really is something else!! Have had so many people stare when he gets going!! Bought a steam vapouriser while had really helped at night.

Hope you get some positive news very soon.

Xxx



 
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