Thoughts PLEASE?? Transplant

[Lynlw]

Glad everything is going so well
I passed the link to the tv on to some of my chd groups may i have permission to pass your updates as I ask for prayers?
also i am thinking it is CMV virus, since that is one fo the things they test blood for and give cmv neg blood to mbabies and people w/ compromised immune systems, Lyn

 

[Emma]

Glad everything is going so well
I passed the link to the tv on to some of my chd groups may i have permission to pass your updates as I ask for prayers?
also i am thinking it is CMV virus, since that is one fo the things they test blood for and give cmv neg blood to mbabies and people w/ compromised immune systems, Lyn

Hi Lyn,
Yes of course pass it on wherever you think prayers and thoughts will be given - all counts and is appreciated!!

And yep thankyou it was cmv virus - couldnt think of the initials earlier - lol

Thankyou for your message and concern!
Love Emma
xxx

 

[Lynlw]

Hi Lyn,
Yes of course pass it on wherever you think prayers and thoughts will be given - all counts and is appreciated!!

And yep thankyou it was cmv virus - couldnt think of the initials earlier - lol

Thankyou for your message and concern!
Love Emma
xxx

No problem, you know when you are a heart parent ALL heart kids are yours I did change your post alittle just the cmv part so there are a ton of replies saying cmv lol
please let them know another hundred or so families are praying for Lucy and we ALL are waiting to see the video of Lucy in the bouncy house.

 

[Emma]

Tues 11pm teeny update

Tues 11pm teeny update

Lucy is fine this evening...
Her adrenalin is coming off tonight and nitrous will go tomorrow now and they will still probably try and wake her up tomorrow!!

GO LUCY!!!

xxx

 

[Andrew'sMom]

GOOOO LUCY!!

sending out lots of prayers & hugs!!!!!

 

[gijanet]

Yahooooo!!!

Yahooooo!!!

Am just now catching up, Emma! Thanks so much for posting this. I am absolutely thrilled for Bev and Lucy. I know this last year has been so hard on them........probably Bev more than Lucy. Give em our love, and we will be praying that Lucy's recovery continues to go smoothly. Many hugs. J.

 

[Emma]

Wednesday morning update

Wednesday morning update

The gorgeous textbook style Lucy has had a nice stable night, they have upped her adrenalin a bit but thats not unusual at this stage and she is off the nitrous oxide!! YAY!!! They are hoping to get the vent out this afternoon and get her waking up which would be lovely!!

Bev and Steve will obviously be in with Lucy near on constantly once she's awake and alert so I dont expect very regular updates and have told Bev not to worry about that but to concentrate on where she needs to be (bless her she worries). I will update as soon as I hear anything from them each day or let someone else know if I'm out.

Thankyou as always for the support which is so much appreciated by them all up there!!!

Loads of love
Emma
xxx

 

[Emma]

So tonight - more GOOD NEWS!!!!!!!

Lucy came off the vent at 7.45pm tonight and is very angry!! She wants a drink!!! Poor lamb - at least shes showing her strength! She's awake and alert now which is nice and has been looking at some balloons she's been sent (which incidentally, Bev found out came from Gemma with Aimee and Lucy loves!).

Shes had a settled afternoon all in all. Has puffy eyelids but thats what happens with morphine anyway. Shes on a frusemide IV to help her wee a bit more and now the vent is out I'm sure she'll start feeling a lot happier about things.

Bev has thanked Mike Burch for putting Lucy on the list in the first place and giving her this chance and he in turn thanked them for raising awareness for organ donation which was nice to hear too!

Bev's gone back in to be with Lucy for the night now so I will probably have another update for you all some time tomorrow.

YAY LUCY!!!!

xxx

 

[Emma]

MORE GOOD NEWS!!

Shes still of the vent and waking up. She has an oxygen mask on and is still cross cos she wants a drink. She will hopefully have the chest drains out today and maybe get walking!!!

LUCY you are a STAR!!!!!!

 

[Andrew'sMom]

HOORAY LUCY!!!

what wonderful news to read!!!!

prayers continue for her complete recovery!!

 

[pipersmith]

WOW - thank you for sharing. Prayers her way. Best wishes for a healthy recovery - and years of love for that new Teddy!!!

 

[catwoman]

Emma:

What wonderful news! Am praying the rest of her recovery goes well.
Years ago, one of our employees here at the newspaper I work for had a heart transplant, at the Texas Heart Institute in Houston. Don't remember the situation that required the transplant, but he had been an extremely heavy smoker.
He quit smoking cold turkey, got a new heart and did well.

 

[Emma]

Thursday evening update

Thursday evening update

Have spoken to both Steve and Bev tonight - both of whom said Lucy has not had such a great day today.
But its not drastically bad by any means either!!

She's had a pulmonary artery line out and had medazalam (sp?) for that which makes her incredibly (in their words!) 'crabby'! And while she is getting annoyed and crabby her sats drop and pressures go all over the place!

She has also had 2 episodes of very increased heart rate (174bpm) and they don't know why yet so are watching that carefully.
They havent managed to get her up or get the chest drains out as it was left till late in the afternoon before anything was done with her today.

But shes ok and these arent major setbacks by any means - just Lucy letting everyone know she's here and in charge I think!!

Keep fighting little star!!
Lots of love to you!!!
xxx

 

[Karlynn]

Thank you for the update. Will continue to keep her in my prayers.

 

[Emma]

Thursday 11pm update

Thursday 11pm update

Just had another chat with Bev before bed.

Lucy is still a grump bless her. Think I would be too to be honest after all that! Bev and Steve have been told its the morphine that does it plus the big anti-rejection drug she started on today
Speaking of which, shes not showing the side effect of interrupted kidney function with that drug yet so YAY for that!!

The plan for tomorrow is to get those chest drains out in the morning and so get the morphine off, then get Lucy up and walking or at least sitting in a chair.

The doctors arent worried about these increases in heart rate now cos they say that if anyone had a heart monitor on during their sleep they could see increase like this sometimes too.

Lucy has also been started on pump feeds as she's quite small and the doctors feel she needs quite a bit of building up before she goes home too so its good to see something being done about that as well!

Think that was about it - Bev sounded tired tonight but we had a nice chat, I sent everyones love and told her of the continuing support and we managed a few giggles so that can't be bad either!

Will update more on our little star in the morning when I hear
Night night
Emma
xxx

 

[temp69]

good luck! sending prayers your way.

 

[Andrew'sMom]

sending smiles to lucy for a wonderful day tomorrow with lots more of those forward steps!

 

[gijanet]

Still sounding really wonderful!

Still sounding really wonderful!

Not the pain, of course, but the rest sounds pretty darn good. Thanks for the updates. Jane is keeping the heterotaxy group updated as well. Still in our prayers. Hugs. J.

 

[Emma]

Not so great Friday morning update

Not so great Friday morning update

Lucy not had such a good day so far, sats keep dropping even with increased Oxygen, also dumping lots out of chest drains, breath sounds quiet on left side. Working Harder to breath. Lucy has just had chest x-ray, Drs are with her now..

Keeping everything crossed this is just a teeny blip and nothing more!!

Love Emma
xxx

 

[pipersmith]

Just said a prayer for little Lucy and her parents - bless their hearts!!