Monday, February 8, 2010

Jax is ok, but serious prayers are still needed!

I didn't mean to scare anyone, Jax is doing amazing. We are hoping to be off the vent totally tomorrow. He was off all day today, and will just be on tonight. I'm hoping we can just go home from PICU, no need to go to the floor. If his oxygen needs are still higher than normal, we can do that from home!
But friends, some serious prayers are needed right now. I have a friend Kelly that I've know for about three years. Her little girl Libby, has multiple heart defects, and has been struggling for about a year now. She had a rough start to life, coding after her first open heart surgery at 5 days old, requiring one full hour of CPR. She's now almost 5, and they've been in Stanford all year, trying to get her better. She had open heart about 5 months ago, and just went in 4 weeks ago for what was supposed to be her final repair for a while. But those lungs of hers are just trashed, even worse than Jax lungs. Her mom texts me updates, and I knew last night they had to put Libs back on the vent. But this is the text I get this morning. "Prayers please, Libs just coded, they are doing CPR, and I'm stuck in another room." So of course I've been dying all day. I just got another text tonight that says she's on echmo and dialysis. They are going back to surgery to try and stent that right pulmonary artery. She's as sick as they get, full life support, and its not looking good. I'm ready to get on a plane right now to be by her side as she fights with her baby girl. Last year we bumped into each other at Disneyland, she was on a Make a wish trip. What are the odds? Out of the millions of people at Disneyland, we see them. I could tell from a mile away it was her with her gorgeous long hair and oxygen on her little face. I love this little girl, and my heart is shattering!
Libby with her blankie.
Her open heart 5 months ago.


A new cute haircut!

20 comments:

Emily said...

Oh... sweet little girl. They've got my prayers.
So glad things are looking up for Jax!

Jessica said...

My heart is breaking for that mama. Prayers are being sent.

So happy for jaxson's progress!

Kristin said...

praying...

Junior said...

We are praying for this beautiful little girl.

glad to hear Jax is doing better, such a fighter.

Maureen C said...

What a sweet little girl. She's got our prayers!

Happy to hear Jaxson is doing better!

The VW's said...

Poor sweet girl! Sounds like her family has been through a lot! I'll be praying!!!

Glad to hear that Jax is doing so well! Praying he continues to do well and that you guys can make it home very soon! Love and Hugs!!!

mandd3 said...

I know you will let her mama know all these people are now praying for her daughter as well as your son. May the Lord walk close with her during this dark hour.

mandd3 said...

Sorry Lacey,
I was so wrapped up in Libby's story I forgot to say that I am so glad that Jax is doing better. It would be great to get discharged straight from PICU. Thanks for getting back to me on the symptoms. Tomas is still holding his own, he has a standing appt. with pulmonary on Thursday so if he isn't sounding any better she may just change up his meds. Take care and may you all be home soon.

Rochelle said...

So glad to hear the news about Jax! Yeah!!!

Will keep praying for him and for Libby! What an awesome thing that you met at Disney...God does work in mysterious ways doesn't he?

Becky said...

WOW-I will definitely keep her and her family in my prayers. Keep us updated. Happy that Jax will be home soon. :)

Heather said...

I know how these other children that you have met along this blogging journey,have become your own,much like Jax has become one of ours.Lacey,you have one of the biggest,kindest hearts and that is why we love you all so.

Praying for Jax,knew he would show us all once again how strong he is.And praying for Libby.

Hope you are whispering in that sweet boys ear that his girlfriend can't wait to see him ... in less then a month!!!

ABandCsMom said...

How sad for this sweet little girl and her family. Poor little gal has been through enough.

I know all about ECMO. It's a scary machine, but it can work. It can be successful. I have an 8 year old to attest to that.

We will be praying for her and for her family. Please keep us updated.

jjpsmommy07 said...

glad Jax is doing better. Will continue prayers for Jax and add Libby in as well.

Sakura said...

Praying :) What a beautiful little girl. And I'm glad Jaxson is doing better

Alicia said...

So glad to hear Jax is doing better. I hope the next update we hear from you is from the comfort of your home.

So sorry to hear about Libby. She sounds like a sweet girl. I will pray that she pulls through this. Keep us updated on her condition, please.

Tausha said...

Glad Jax is doing a bit better. This family will be in our prayers. Praying for both of you.

sturpin said...

oh sweet girl. There is entirely too many wonderful people being called home too soon lately. Her poor Mom. I'll pray

Baylee and Blair's page said...

OMG... that breaks my heart! I will be praying my little heart out that they can save her!

Hugs - Tiffany

Meghann said...

Hi, I follow Jax story and pray for him often. Glad he's doing better. Your strength and love inspire me!

I just wanted to share how Libby's story hit a tender part of my heart and I'll be praying for her.

Becca said...

Oh, what a beautiful little girl. My thoughts are with her and her family. I hope to hear good news soon.
Glad things are better with Jaxson!! I hope you can all go home soon!