Thoughts PLEASE?? Transplant

[Emma]

Have just had a long chat with Bev but firstly Lucy. Was so surprised to hear 'Hello Auntie Emma, I've got a new rocket' - that I almost burst into tears on the spot!!
After establishing that the 'rocket' was in fact her new engine that is enabling her to go like a rocket, we had a very cute chat!! Shes sooooo sweet!!

The reason Lucy spoke was that she is now allowed out of the hospital for short times. She was in the flat with Bev and Steve when we spoke!!! Gobsmacked and overjoyed I think sorta covered what I was thinking - although nowhere near how Bev and Steve are feeling.

The rejection wasn't too bad and the doctors arent worried about it at all.

Down side to recovery after transplant means Bev and Steve have been told Lucy can't have visitors for 3 months and although upsetting for those who would like to visit (Chloe for one!), I would hate to see Lucy set back by an infection passed onto her so I'm sure everyone will understand that.

She is just doing SO well - and HOME will be more than likely next Monday but could be Tuesday!

Lucy is eating loads now and not even needing to come home on any protein shakes or anything either!!!

Am over the moon to be posting this!!
Loads of love
Emma
xxx

PS - yep Janet, Bev is updating me each day and I'm updating others who are updating others if you get what I mean! hehehe

 

[Emma]

Lucy photo 9 days post transplant!!!

Lucy photo 9 days post transplant!!!

 

[Emma]

She is PINK for the first time in her life!!!!!

 

[Karlynn]

Such wonderful wonderful news. Please tell the family that there are lots of caring strangers that feel like family now.

 

[Lynlw]

Oh how wonderful and she looks great. Actually I know of another little girl getting a heart right now in CAL, I hope she does as well as Lucy has, Lyn

 

[Gnusgal]

Where did the picture go? I wanted to see it!

Please tell the family that I have been following Lucy's journey with avid attention. It gives me hope for when my time comes...

 

[catwoman]

Emma:

Sounds like Lucy is doing great!

Re: the organ rejection
I've seen a couple of programs on the Discovery Health channel with Dr. Mehmet Oz, cardiothoracic surgeon at Columbia University New York Presbyterian Hospital in New York City. Some of these patients have had transplants & had traces of rejection noted, but the doctors got the patients past those hurdles OK.

 

[Emma]

Been on the phone to Bev for one of our lovely long chats - it was like old times with a relaxed Bev! Something that really did cheer me up (although I didnt tell bev) was that she was obviously feeling relaxed and happy enough with Lucy to be able to think of other things now - like home - and talk about them too. Was so nice to hear!

Lucy will be going to the flats with Bev and Steve for the weekend and home Monday to Alice and Ben and the rest of the family!!!

She's eating lots and is going to an Italian restaurant for lunch tomorrow although it has to be at a quiet time to avoid any infection risks.
Lucy now has to have a very healthy diet to decrease any risks of coronary heart disease later, as this is a major cause of the new heart failing later down the line and cannot eat grapefruit or anything with grapefruit in it as it interferes with her big anti-rejection drug and can cause kidney failure so theres no grapefruit in the Pearson household any more.

Bev and Steve are fine with the medication regime - but then why wouldnt they be. Lucy has always been on drugs and they're always given them very ably (sp?) so Lucy has the best possible people looking after her - the best mummy and daddy she could have!!!

They have been told all sorts of little bits and bobs to watch with Lucy and been told to possibly expects little blips along the way but Lucy is doing so so well that she will handle anything else with no problem at all I'm sure!!!!

Sending love to the little pink star!!!!
Emma
xxx

 

[geebee]

Great news Emma. I hope things just get better and better and Lucy lives to be 103.

 

[Emma]

Just had a lovely call from a very perky Lucy. Chloe also spoke to her briefly too after leaping up at me to grab the phone! lol

She sounds so happy and giggly and was busy looking through the Argos book to see what present she wanted from her mum and dad for being so brave!!
Although Lucy being Lucy was more worried about getting Ben and Alice something so they wouldn't feel left out! She is just the sweetest little girl!!!!

All is fine and they are discharged from the ward now to the flat and only have to go back 10.30 Monday morning before going home!!! YAAAAAAAY!!!
There is a possibility they may go home on Sunday now too but any time is fine as shes doing just so well now!
Then Lucy is back in clinic on 30th August for a checkup and beginning of October for her next biopsy.

Bev and Steve were just off to take Lucy to the Italian for lunch when we finished speaking and I'm sure she will eat lots as her new appetite is just huge apparently - lovely to hear!!

Cannot wait to get the 'We are home' call!!!!

xxx

 

[Emma]

Lucy is doing really well still - all obs were fine this morning... Sats of 100% and bp fine too.

She has been bought a nintendo ds as her present for being brave but refused to have one unless Ben and Alice could too as she felt that wouldnt have been fair! BLESS HER!!! So Bev said it was lucky Father Christmas has saved a bit of money already and was able to get them one too! lol

Something quite interesting though is that Southampton had Lucy down as 'hypertrophic cardiomyopathy' which Bev had always had referred to as 'heart failure' due to Lucys complex chd. Bev questionned it at GOS when she saw it on the dicharge paper and was told thats right and it shouldnt have been referred to as heart failure. Strange?!

But all is well, they've been out a little bit, had lunch out and still home Monday as long as little Miss Pearson behaves as I have no doubt she will!!!

xxx