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How's your little one Mrs G? xxx
Anyone else with a TOF baby??
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LaughOutLoud
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How are things and your little one? Hope it's getting better each day X
Mrs G
Lily and Tommy's mummy
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Hi
What a nightmare hun. I remember Tommy pulled his tube out early on and I had to leave the room when they put it back in. They really don't like it do they, poor things. One of tommys last ops took ages and when they came back they said it had taken them 45 mins to get a line in him. Theirs little veins just can't cope with it.
I hope she's doing ok today, you guys are alway in my thoughts. I can't imagine what it must be like. Have they managed to do her op yet?
We're on, starting to think about weaning. The consultant said to start sooner rather than later and take it slow. Bit scary how he'll cope with it.
Xxx
What a nightmare hun. I remember Tommy pulled his tube out early on and I had to leave the room when they put it back in. They really don't like it do they, poor things. One of tommys last ops took ages and when they came back they said it had taken them 45 mins to get a line in him. Theirs little veins just can't cope with it.
I hope she's doing ok today, you guys are alway in my thoughts. I can't imagine what it must be like. Have they managed to do her op yet?
We're on, starting to think about weaning. The consultant said to start sooner rather than later and take it slow. Bit scary how he'll cope with it.
Xxx
sethsmummy
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hey hun sorry ive not popped in in a while 
so sorry to see your no closer to home yet
I really hope they managed to do the surgery little one needed. Cannulas are awful things to get into little babies. They struggle to get them into Rohan when theyre needed and now tend to use a foot because hes had that many in his hands the viens just shut down as soon as they try to get one in.
so sorry to see your no closer to home yet
I really hope they managed to do the surgery little one needed. Cannulas are awful things to get into little babies. They struggle to get them into Rohan when theyre needed and now tend to use a foot because hes had that many in his hands the viens just shut down as soon as they try to get one in.
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She's had her pH study done. We're still waiting on results at the moment.
Hopefully though plans for surgery should be made from then. Just want to get on and get her home
So we're still just waiting but lets see what tomorrow brings. Thank you for thinking of us
Hopefully though plans for surgery should be made from then. Just want to get on and get her home
So we're still just waiting but lets see what tomorrow brings. Thank you for thinking of us
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I'm trying to come online more often to update. Well not much change today.
Surgeons came for rounds and...... still no pH study results.
If they're not back tomorrow you may hear that I've stamped my feet like a 2 year old at her drs and surgeons.
On another front I've been seeing the hospital psychologist as finding it all a bit hard. I've been given meditation exercises which seem to be helping calm me down. So that's a positive for me xx
Surgeons came for rounds and...... still no pH study results.
If they're not back tomorrow you may hear that I've stamped my feet like a 2 year old at her drs and surgeons.
On another front I've been seeing the hospital psychologist as finding it all a bit hard. I've been given meditation exercises which seem to be helping calm me down. So that's a positive for me xx
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It also seems Jessica's skin has an issue with surgical tape they stick her tube on with it goes red and blistered whenever it comes off she had the tube swopped nostril on Saturday (I believe) and today the cheek it was taped to originally us still red sore and dry. Poor girly xx
sethsmummy
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I'm sorry they're taking ages Hun. Hopefully they will
Have the results for you today. I'm glad the meditation seems to be helping and thank you for thinking of coming in for more updates 
I hate the hospital tape. I'm
Not sure what it's called but with Rohan the nurse put like a little gel patch thing on his face so the tape didn't stick to his skin quite so much because he was really hairy with being prem and it kept ripping the hair and top layer of skin off. Ask them
Not to use it and to use something else. Surely they must have something incase someone is allergic to that specific tape. Blistering doesn't sound normal. Rohan just got really red from it abraiding his skin. Never any blisters xx
Have the results for you today. I'm glad the meditation seems to be helping
and thank you for thinking of coming in for more updates I hate the hospital tape. I'm
Not sure what it's called but with Rohan the nurse put like a little gel patch thing on his face so the tape didn't stick to his skin quite so much because he was really hairy with being prem and it kept ripping the hair and top layer of skin off. Ask them
Not to use it and to use something else. Surely they must have something incase someone is allergic to that specific tape. Blistering doesn't sound normal. Rohan just got really red from it abraiding his skin. Never any blisters xx
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Yeah we've tried with and without comfeel (gel pads) but yeah no change. Poor baby we've tried alsorts.
Still no answers as yet. Again hopefully we'll hear from her surgeons tomorrow *sigh* if not I'm afraid I might have a tantrum to rival a child
Hope these messages are reaching you all well xx
Still no answers as yet. Again hopefully we'll hear from her surgeons tomorrow *sigh* if not I'm afraid I might have a tantrum to rival a child
Hope these messages are reaching you all well xx
LaughOutLoud
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It's horrid when they already going through so much an then the little things also hurt them...it makes me feel so bad because enough is enough! I remember my DD nasal tube kept coming out and they put so much pressure on it that it was leaving red marks and pressure on her forehead but I didn't know what to say or do because the oxygen was obviously important. She had a mark for a long time after we got her home.
I hope things hurry along for you X
I hope things hurry along for you X
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
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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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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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
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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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
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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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
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
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
mrsG sorry to hear your little one was in hospital with Bronch. how are they now? Bronch is blooming horrible xx
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
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
