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Old Nov 23rd, 2015, 02:11 AM   11
Mrs G
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Hi
Which hospital are you in? We were in Southampton nicu at princess Anne and then he's been in the general hospital for the dilatations.

The signs I've noticed before he needs dilatation are not burping after a bottle, getting slower at feeding, the rattley sound in the throat (although he gets that after the op too and if they've tried to put an ng tube down) and then the last sign is gasping for breath and the blue episodes, id telly after a feed.

Are they feeding her with a tube as well as bottle? What have they suggested about upping her feeds?

It's such a stressful time isn't it? Especially trying to juggle another lo at home.

Xx



 
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Old Nov 25th, 2015, 19:22 PM   12
Bumblebee2408
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We're not a million miles away we're at a hospital in Bristol.

She has an TAT tube in for feeds but they allow her to try small anounts to see how shes getting on. She's thrown a scary bluey today and they had to give her oxygen. She's also picked up an infection so she's not even been allowed the 5mls between feeds today.

They have said they won't up her feeds until SALT team are happy. However whenever they've come to assess she's either been poorly so not drinking or she's been asleep so they couldn't see her feed 😞

She does seem to me to need another dilatation as she seems to be struggling more with her breathing, sounding rattly especially after any type of feed and she's coughing when swallowing her own saliva. However no mention from surgeons about this. I'm going to speak to them tomorrow and see what they say.

She's just not herself lately but unsure if that's to do with her infection she's very pale as well.

It is stressful we're very lucky we're able to split our time between Jessica and Jack. We spend weekdays here with her and weekends home with Jack. He's a good boy and we miss him tonnes. We could move him into the funded accommodation we're staying in but there's not many things he can do; or parks etc to take him to and he gets so fed up here. We're lucky my husbands family are really close with him and he settles easily with them and they're happy to have him xx

How's your LO doing? Xx



 
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Old Nov 26th, 2015, 14:43 PM   13
Mrs G
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Hi, how are you doing today?
What a nightmare dealing with infection as well as the tof. Are they giving you any indication of how long the process will be? When Tommy struggles with his saliva they put in a replogal tube which basically sucks it all out for him, has Jessica had that? It's not nice to put in but really helps when they're struggling.

We're back in for dilatation tomorrow, but (fingers crossed) looks like we've got as far an actual scheduled appointment this week, rather than having to go in as an emergency. Tommys had very few signs this week so I'm really hopeful they'll say there's minimal closing tomorrow.

I feel so guilty when I'm not at home but Lily's old enough to kind of get it but she breaks my heart when I'm away with Tommy and she asks if I'm coming home.

Keeping everything crossed for some good news for you.

Kath xx



 
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Old Dec 1st, 2015, 09:30 AM   14
LaughOutLoud
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Just thinking of you and your heart babies x



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Old Dec 3rd, 2015, 14:12 PM   15
Bumblebee2408
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Sorry I've not been in for a few days.... right we have a list of things for you today Jessica is due a dilatation next week.... She's getting very bubbley (the nurses help with this by suctioning it all away as and when needed). However still choking on 5mls of milk..... So next week they're looking at doing a gastrostomy - this is where they make a surgical opening through the abdomen into the stomach. A feeding device is inserted through this opening. This allows her to be fed directly into her stomach, bypassing the mouth and throat.

Then on top of that they are wanting to do a fundoplication at the same time - Fundoplication is a type of surgery to prevent stomach contents from returning to the esophagus. This is achieved by wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus..... However I need to chat with the surgeons about this as I've read up on it and itcam cause so many issues after surgery... Stomach problems, loosing the ability to burp which can cause build ups of air in the stomach which I can imagine would be painful.... As far as I know she's been Ok and doing well on her reflux medications so I'm not sure why they're thinking of doing this.

Anyway sorry for rambling on and hopefully that all makes sense.

Did you know there's a TOF website with lots of info and advice as well..... www.tofs.org

Hope your little one is doing well.

Thank you for thinking of us xx



 
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Old Dec 4th, 2015, 08:30 AM   16
Mrs G
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Hi, hope you're doing ok.

Wow, you've got so much going on. How is she doing? Which reflux meds is she on? It's so hard to decide what's best to do. You don't want to put them thru operations and you just have to trust the Drs.

We're in again today for dilatation. This is his 5th one but they've said they might wait and see what happens rather than booking in any more. Bit scary with Xmas coming up.

Xx



 
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Old Dec 6th, 2015, 18:23 PM   17
Bumblebee2408
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Yeh we have lots going on but we just plod along :-)

We've not had a good few days sounds like we're going to be in the hospital til mid January. She's had 3 blue do's yesterday and then at least 1 today and she is back on high flow to help her breathing.

Waiting for a date on her dilatation. Then the other op from there. Hope Tommy's Dilatation goes well for you xxx



 
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Old Dec 6th, 2015, 18:26 PM   18
Bumblebee2408
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Oooh and she's on ranitadine and domperidon for her acid reflux



 
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Old Dec 13th, 2015, 01:43 AM   19
Mrs G
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Hi. Hope you and little lady are ok. Xx



 
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Old Dec 15th, 2015, 18:24 PM   20
Bumblebee2408
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Yes sorry it's been a while again!

This time we have good news.... She had her dilatation last Thursday and was taken off high flow yesterday and since yesterday has also been allowed to try 5ml feeds...... And she has had 7 feeds in total in the last 48 hours (via bottle) and managed it without so much as a cough..... The rest of her feeds have been done down her tubes. SALT team are hoping to come down in the next few days to assess and see where we go from here xxx



 
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