Thoughts PLEASE?? Transplant

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Better update - Fri afternoon

Better update - Fri afternoon

Much better news now...

They discovered that what caused this morning's blip was a build up of fluid on Lucy's chest. They have now taken out the chest drains as they had stopped draining it off but the fluid is leaking through one incision and keeps needing cleaning but Bev said at least its coming out somehow.
They aren't putting any more drains back in for now and the doctors are very pleased with her progress still!

She is reacting well to the anti-rejection drugs and has come off the drug they found out was causing her high heart rate those odd times yesterday.

Best bit! Lucy has been out of bed today and sitting up in a chair chatting. She's also eaten 4 spoons of spag bol that she fancied!! Bev says she is extremely weak and can't walk yet but I'm sure that will just take some time and eating as anyone would be weak after that kind of surgery and no food for 5 days!

May hear from Bev again later or if no change it'll probably be tomorrow.

Thankyou for all the support and wishes for the Pearsons!!!

xxx
 
Saturday morning

Saturday morning

Had a text from Bev early this morning but have been lazy and only just got up - sorry!

'All good so far. Sats 98& in air. Hoping the art line will come out today. Is eating small amounts and is being pump fed overnight. Don't know what is causing heart rate too increase at times but blood pressure remains stable throughout. Morphine is being stopped and she is sat out in a chair at the mo. Still can't believe her progress. In total awe of her. Lets hope she continues this path. Has 1st biopsy booked on Monday. Dr Burch (Lucys consultant) is smiling so he must be a very happy man.'

He's like everyone here then who keeps smiling at the updates I'd assume!!! :D

So thats all good. I can only assume the heart rate has had more increases since I spoke with Bev yesterday as they'd then thought it was a med causing it and they took her off that one. But I'll ask later when she rings.
Keeping everything crossed for no signs of rejection at the biopsy on Monday and I have been constantly sending all the love from everyone!
 
All good news again!!!!
Right, let me try and remember all this cos when me and Bev get chatting it can last a while then i forget bits. lol

So...
Arterial line and all drips are out! Drugs are all oral now. She has eaten some more spag bol today and asked for chicken nuggets for tea too!

Her sats are 98% in air and she has no need for oxygen mask any more either!!

Her heart rate does shoot up sometimes for no apparent reason so they are just watching that.

Other than that, she's been up out of bed most of the day and Bev and Steve are obviously in with her all day and only coming out while she sleeps. Everyone is just amazed at her progress and the 'ward' word is being mentioned already! WOW!!!

Bev was also saying how the surgeon said her old heart was 'knackered' and ready for this!! So lucky Lucy got this now as it looks now like she may not have had long with her old heart! Gave me shivers even talking about it with Bev!! And thankgod for GOS putting her on the list and for the wondefully kind donor and their family did what they did!!

Bev sends her love and thanks as always
 
Bev's first words to me this morning... "Things just keep getting better and better!"

Bev and Steve were enroute to find a big cake when they phoned. Lucy has informed them she wants a big cake with 'Get Well Soon' written on it. lol Bless her!! Hope they find it!

Shes soing so well that they are going to try and get her up and walking today then hopefully out onto normal icu unit rather than transplant later today with the plan of going up to the ward tomorrow!!!! YAAAAAAAAAAAAAY!!!

I don't even know what to say - less than a week after transplant and shes doing so well. She was sat up in her room colouring when Bev and Steve went out this morning.

I asked Bev if she was happy in herself and she is. She's told them she 'feels better now'!

Cathetar is coming out today and shes reacting fine to the anti rejection drugs still! Tomorrow the central line should come out too. Thats only staying in tomorrow to get take the blood they need to test for that cmv virus (did i get the letters right this time???).

So all is good!!! More than good in fact!!! The little star is doing brilliantly!!!!

Loads of love
Emma
xxx
 
I just love modern medicine and great stories like Lucy's. I am in constant awe of what can be done.
Emma, thanks for keeping us updated on this wonderful success story.
 
Sunday evening update

Sunday evening update

Lucy is out of the transplant icu now and onto the normal icu unit with the hope on being on Ladybird tomorrow!!

Bev and Steve did find her a big chocolate cake and Lucy has been offering it to all the doctors and nurses today! Bless her!!!

Bev will ring tomorrow evening after the biopsy which is booked for the afternoon so I will update when I hear then.
xxx
 
Had a text from Bev...

'Biopsy at 1.30pm. Not going to the ward today . No beds and a teenager is going in the cubicle she should have had so she has to wait for another to become available.'

Will be thinking of them this afternoon and keeping everything crossed for that biopsy showing no signs of rejection!!

Love Emma
xxx
 
Lucys biopsy went ok. She was gone about an hour. They have been told to expect some signs of rejection as thats common. Lucy is eating and needs the ng tube out now!!

They should get results from the biopsy tomorrow evening or Wednesday morning and theres no more news on her going up to the wards yet unfortunately.

So the little star is still doing brilliantly!!
xxx
 
Just been chatting with Bev...

Lucy has had the biopsy and done really well after it! She was up drinking and talking 10 minutes after coming up from the cath lab and waking up! Star is the only word for her! Results will probably be with them wednesday morning.

The catheter and arterial line are both out and Lucy has been up and walking. They are hoping to try stairs tomorrow.

Bev and Steve have been told not to be surprised or worried if the biopsy today shows rejection at some level but it's fine, they will deal with and its not uncommon!

The doctors and nurses all love working with Lucy and think the whole family is lovely!! Well, we knew that already but its nice to have that recognised by other people too!

And I am going to say this very tentatively and it brought tears to my eyes when Bev said it but the doctors have even mentioned the 'h' word for early next week!! AMAZING isnt it?!!!!!

Bev and Steve are thrilled with the support through all this and say thankyou as always.

Lots of love to them all
Emma
xxx
 
Lucy had an echo and ecg today and has done some more walking.
The biopsy yesterday did show some signs of mild rejection and the doctors are going to speak with Steve and Bev tomorrow to tell them what they plan to do about it.
Best bit of today - ng and all other tubes are now out (only 2 canulas to go now!) and they are up on Ladybird ward!!! YAAAAAAY!!!!

xxx
 
Emma,
Please let us know what they tell Lucy's parents about the mild rejection. I assume this is fairly common, but it worries me none the less.
Mary
 
Mary said:
Emma,
Please let us know what they tell Lucy's parents about the mild rejection. I assume this is fairly common, but it worries me none the less.
Mary
Click to expand...

I'll second that. I had heard that everyone undergoing a major organ transplant will go through bouts of rejection, but that the medications they have now control most.
 
emma,
hope lucy doesn't have too many issues with rejection and that it's easily controllable. otherwise, sounds like this little girl is doing well.
please wish her family all the best. she remains in our prayers.
-sylvia
 
Emma..........

Emma..........

Thanks for keeping us updated. This is faster than checking the heterotaxy group, and I think Jane is getting all of her updates from you anyway. :D I am so grateful to hear that things are continuing to go so well for Lucy and Bev. SEnd our love and prayers. J.
 
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