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Regattah

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Fingers crossed for the sinus rhythm to kick in then. It is still early days.

 

Yes Life can be like that unfortunately .......these all or nothing times! Nobody's been ill for months and months and then everyone gets something. Or nothing goes wrong with household equipment for years and then three things pack up at once!! Very annoying!!

 

Anyway still thinking of you and your family and glad ENB DD got some joy last week!!

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Oh Regattah, I feel for you! Life never seems to throw just one curve ball. It throws several. I pray you young daughter's sinus rhythm kicks in without needing a pacemaker and your son recovers quickly too. Hugs and love to you all. x

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Have not commented before but have been reading and keeping up! Hope everything works out! I have a son with a life limiting condition and a DD and know how difficult it can be and know exactly what u r going through! My DD starts at Ballet Theatre UK school in September and has been very hard over the years! Wish u all the best and private message me if u want to off load! x x

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Have not commented before but have been reading and keeping up! Hope everything works out! I have a son with a life limiting condition and a DD and know how difficult it can be and know exactly what u r going through! My DD starts at Ballet Theatre UK school in September and has been very hard over the years! Wish u all the best and private message me if u want to off load! x x

Oh sblick, I am so,so sorry to hear about your son. I am extremely fortunate that both my son and myself have good health,and we do not know know anybody with a serious medical condition. How lucky we are.! We should treasure our lives,as indeed they are precious.

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Thank you sblick! It's funny how you just find resources to keep going, isn't it? I try to take one day at a time which is the only way I could handle everything.

 

Congrats on your DD's place. She's done really well. I am looking forward to hearing everyone's reports on the school from September as it's sixth form audition year for older DD next year!

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I had a request on PM for an update, so here goes!

 

Little DD is recovering well in herself. She's been off morphine for a few days and has been completely off oxygen now for a couple of days. She's up and about the ward, even though she has to carry not one but three monitoring boxes around with her. Wires and stickers everywhere!

 

We are still waiting to see if her heart will go into sinus rhythm without fitting an internal pacemaker and we've been told we have 4 more days for it to change. If she does need a pacemaker it will probably be put in next Friday and will unfortunately need to be a bigger op than a typical pacemaker op would be. Due to her bizarre anatomy they would have to go in from below and it would have to be open-heart surgery, so recovery time would be longer.

 

We have now moved from the High-Care bay into our own side room, so have lost crying babies and gained a TV and an en-suite! I don't know how long it will last though; if a teenager or anyone needing isolation care comes along we will be turfed out! I think DD has only been assigned it at the moment as she is the oldest here for the time-being.

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  • 4 weeks later...

Hi everyone

 

Just to give you an update on my little one, it's now a month since the op and she's doing so well. She looks great (pink!) and has so much more breath. When she had a clinic appointment a couple of weeks ago her ECG showed her heart in sinus. Obviously that's just a snapshot and we don't know if it stays that way all the time, but her doctors are really thrilled with her.

 

She's desperate to start ballet again and complains constantly because she can't do cartwheels for 12 weeks post-surgery!

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Very happy to read your update. I have been wondering about your dd. We are travelling and have limited wifi, so haven't done much that wasn't super urgent - but really kept meaning to ask about her.

 

Best wishes

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