Thoughts PLEASE?? Transplant

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Next update...

Next update...

Bev just phoned so I rang her straight back and she had good news!!!

THE HEART IS IN AND WORKING!!!!

They estimate another hour or so in surgery still and think they may not be able to close the chest yet as the heart is a little big for her. But they had been looking for a larger heart as Lucys pressures wouldnt have worked with a child's one so thats fine and the chest being open as Bev knows is pretty common with heart surgery anyway and doesnt worry her.

Lucy is also bleeding out at the moment which is a little worry but the doctors say its no more than they expected and are sorting that now!

So good news I think but not letting anything uncross just yet!!!

xxx
 
11.15am

11.15am

just phoned and hope I remember all this GOOD NEWS!!!!

Ok, so she's out of theatre and they closed the chest!!! She's still bleeding and has 4 chest drains in to help with that but its nothing that is concerning anyone!
She also started to wake up when Steve said hello to her and wave her arms about so they had to settle her and put her back to sleep for now and Bev and Steve are happy outside watching her anyway now she's back in PICU.

They havent encountered ANY of the problems they thought they might with Lucy - so far she is being textbook!!!! YAY!!!!

They have to go out later to buy Lucy a new teddy as she cant have her one now due to infection risks but Bev is happy to have something like that to do I think.

Bev and Steve are a lot happier now and although the next 12 - 24 hours are critical for Lucy they do feel relieved.

AND the best for last - Lucy is PINK!!!!! and sats are 100% (ok shes on a vent but still! PINK!!!). bev looked at her toenails and said she was so pleased to see the colour!!!

AM SOOOO relieved and off to shops quickly now - will update when i speak to Bev later

Loads of love and everything still crossed!
Emma
 
It sounds really good Emma, but I will keep both fingers and toes crossed awhile longer.:)
 
Oh, how wonderful to read! Prayers will, of course, continue. What a blessing!
 
Such wonderful news. I will pray that everthing continues to be textbook good, or set the new standard for textbook good.
 
I am so thankful and relieved that all is going smoothly. I will continue to keep Bev and Lucy and their family in my thoughts and prayers as well as the donor family. I can only imagine the sorrow they're going through with the loss of their loved one, but I'm sure it's tempered by knowing that they have helped save another's life. Emma, thanks for doing such a great job of keeping us posted. We look forward to more GOOD NEWS!:) LINDA
 
Sending prayers for your little friend. Glad to read the good updates ... will continue to watch for more.
 
Praying for Lucy

Praying for Lucy

This is a very exciting and scary time, please let them know that we are praying for lucy!

Jamie
 
Bev phoned and was duly phoned back straight away and had mainly good news..

Heart wise shes ok. The right ventricle isnt pumping as well as they'd like yet but apparently thats not uncommon and Bev isnt too worried about it. Also one doc says her urine output is good and he would possibly consider starting the anti rejection drugs tomorrow but another doc says her urine output is poor and would think about dialysis!! Bloomin docs! But Bev and Steve are taking it one step at a time - they expect these small set backs (not big ones please though Lucy Loo!) and are doing fine!

They can't give her medazalan (sp??) any more as it drops her bp so they can only give her bolus' of morphine to calm her which wear off quite fast and leave her agitated about the vent etc so hopefully they will sort that out soon too.

But all in all they are doing well and Bev is very positive!!

Keep everything crossed please as you have been doing so brilliantly for them!
Thankyou!!
xxx
 
Emma How old is Lucy? you know seeing your kid pink and not boue for the first time is such a moment you don't forget, I remeber thinking Justin had a fever or something since he had pink cheeks and not the usually smurf blue I was so used to.
I will pray that everything goes well and for bev and steve to have patients w/ the docs that don't agree on things that is so frustrating , but all in all what a wonderful day :) Lyn
 
Lynlw said:
Emma How old is Lucy? you know seeing your kid pink and not boue for the first time is such a moment you don't forget, I remeber thinking Justin had a fever or something since he had pink cheeks and not the usually smurf blue I was so used to.
I will pray that everything goes well and for bev and steve to have patients w/ the docs that don't agree on things that is so frustrating , but all in all what a wonderful day :) Lyn
Click to expand...


Hi Lyn,
Lucy is 6 - theres only 6 weeks age difference between her and Chloe. I saw her on tv today as they did a small piece on her on local tv live from the hospital and she definately was pink! YAY!!

Actually will try and find the link on here so you can all watch her.
Emma
xxx
 
Spoke to Bev last night but I was in bed and so tired and really sorry I didnt come back to update but this is what she said...

She had phoned over to Lucy's room and she was nice and stable. She was waking up but settles and goes back to sleep. She was told tomorrow (or today now!) would be a busy day!!!

Will update when I hear from them this morning.

Lots of love
Emma
xxx
 
Bev was very cheery this morning having slept last night and eaten.

Lucy had a nice stable night and didnt throw anything at them they werent expecting. Bev said shes getting pinker every time they see her!! Urine output is good now. They dont know if the right ventricle is functionaing any better yet as they've not done an echo yet today but as I said yesterday, its not something anyone is concerned about as its not uncommon for that to happen.
I sent everyones love and thoughts and have told Bev just how many good wishes there are for them on this and other boards. She wants to thank everyone again for the concern and cannot believe how many people are thinking of their little girl! I told her its no more than Lucy deserves but Bev is still overwhelmed by it all.
Bev was going over to Lucy's room when I spoke to her so didnt know the full plan for today yet but there was talk of weening her off sedation slightly and perhaps letting her wake up a bit which would be lovely.
Bleeding has stopped too but theres no sign of chest drains coming out just yet. Its very early days and one drain is still on suction to help her out but thats not an issue - you think how long some of our children have had drains in on a normal heart surgery, let alone a transplant!
So all in all a great update and I'm SOOOO pleased for them!!

As a side note - would just like to point out how selfless (or downright stubborn LOL) Bev and Steve are. Yesterday they got a taxi to Oxford Street to buy some things Lucy needed as everything has to be new for her. They were obviously chatting with the taxi driver about Lucy and when they got out he said he didnt want payment. Most people would have accepted this kind offe, as lets face it, when do you more need support than at times like this and how many kind people are there around anyway?! But Bev and Steve thanked him and paid anyway cos they didnt want to take anything from people!! Just wanted to point out how generally and genuinely lovely they are!

Will update when I speak with Bev later

Lots of love
xxx
 
Thanks for keeping us posted Emma. I'm glad that Lucy continues to do well.
 
Just had a nice long chat with Bev about everyones little star!
Shes really pleased with Lucy as are Steve and all the doctors - nope, strike that - THRILLED with Lucy!! (and trust me, I am saying this whilst touching wood!).

She's doing so well - right ventricle back to working well again after being quite dire yesterday, (doctors told Bev today they were getting worried about it!) but its all ok now.

Urine output is normal and they are even thinking of weaning her off the vent tomorrow if she handles lowered levels of nitrous oxide tonight.
They are also thinking of taking out the chest drains as they have only drained 20mls all day!!! As we know thats good timing for any heart surgery to have drains out, let alone after the bleeding that would occur after a transplant with all the collaterals Lucy had to have cut through too.

There is something called a csx (letters are VERY possibly wrong sorry but i know it began with c!!) virus which could occur in Lucy as she was negative blood group and the donor was positive. If this occurs then Lucy would be more prone to infections such as colds/sore throats etc - especially with her asplenia. So they are testing her blood for that and will give her drugs if that happens. But as Bev and I said, thats nothing compared to what Lucy has been dealing with!

If all goes to plan with the lowering of the nitrous oxide then she may also be started on the big anti rejection drug tomorrow too which can affect kidney function so they will be on the lookout for that if it happens and deal with it then.

Bev says Lucy is reading that textbook and going one better than it at the moment too. She has done nothing the doctors would expect a cardiac child to do after transplant in the way of complications!!!! (Touching wood yet again!)

We even got round to discussing parties for Lucy when she comes home and talked (with tears in my eyes) of the things Lucy will be able to do when she gets home - theme parks etc!!! I am SO excited even just writing about it!!!!

Can't wait to hear how Lucy is waking up tomorrow (fingers crossed!!!!) and looking in the mirror they are going to give her to see how pink she is!!

Think thats everything - I passed on everyones messages and love and support and as always Bev wanted me to thankyou all sincerely!!!!!

Loads of love from an emotional
Emma
xxx
 
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