Prayer request!

[gijanet]

I try not to overburden y'all with prayer requests for our heart kids, except in really urgent cases with kids I have grown particularly close to. And this is a really urgent case and you guys are so good about praying.

Stephen is in dire need of your prayers. He was diagnosed with hypoplastic left heart syndrome shortly after birth and underwent a heart transplant as an infant. Stephen had a great 11 years with few problems...........until he went into CHF last year. He was re-listed for a second heart transplant and has been in Children's Hospital of Philadelphia since last MARCH!!! He finally got his heart October 6th, but has suffered numerous complications (rejection, infections, kidneys not working and on dialysis, lungs bleeding) ever since.

His mom was told tonight that the next 48 hours are critical. This poor family has struggled through way too much to lose the battle now. There are so many things going on with Stephen; just please pray that his body stops rejecting his new heart and for Stephen to make a full recovery. Please also pray for courage and strength for his parents, Chris and Beto.


Thank you guys so much. I truly think there is strength in numbers.

 

[MarkU]

We will pray for Stephen and his family.
Mark

 

[Ross]

Count me in.

 

[Mary]

You got em.
Mary

 

[Karlynn]

Thank you for asking. Prayers already started.

 

[Glenda]

Prayers are going up right now for this precious family.

 

[bvdr]

Count me in, too.

 

[Harrybaby666]

You Have Mine!!!!

You Have Mine!!!!

Hi Janet,
My prayers go in for him and his family go in on a nightly basis, and I will make sure they have an extra strong punch to them. Harrybaby666

 

[catwoman]

Janet:

Count me in... Will be praying for his entire family.

 

[pegne]

I will start praying right now.

 

[Debrinha GT]

Any update?

Any update?

So young and has been through so much already! It's only fair that he makes it, and if it's up to the VR members, he will!! Any apdate since you last posted? BTW, I used to have an uncle whose nickname was also Beto, which is short for Roberto here in Brazil. I'll pray for the whole family and everybody involved.

Débora

 

[gijanet]

Stephen update as of noon.........

Stephen update as of noon.........

Thank you all so much. I just knew I could count on you guys. Please, please keep the prayers up as things are still not looking good. This is so heart-wrenching. Here is an update from Chris as of noon:

"Ugh, I hate these meetings [with head card]. Didn't learn anything I didn't already know, and hearing all the dismal news at once is incredibly difficult. Short story -
we need about 48 hours to get the infections under control. The bleeding HAS to stop soon - hopefully getting the infections under control will also stem the bleeding. Stephen's right lung looks slightly worse on x-ray today, which is not good news. If he has a lung hemorrhage, there will be nothing we can do, he can't tolerate the heparin required to put him on ECMO.

If he makes it through the next 48 hours, he faces a long and difficult
recovery, dialysis for weeks while his kidneys recover, and probably vent support for an extended period of time (with a trach) while his lungs recover. Lots of rehab. But Stephen still has lots of fight left in him, and no one is giving up on him yet."

 

[Debrinha GT]

What a fighter!

What a fighter!

This little guy deserves his life! Where there's life there's hope so, more than ever now he needs our prayers, and that's what he'll get here!!Thanks for the update.

Débora

 

[ericaj]

prayers

prayers

In my Thoughts and Prayers .. tonight, tomorrow and every day there out ..

Erica

 

[Abbanabba]

I'm adding my best wishes and positive thoughts to everyone else's.

Anna

 

[gijanet]

Stephen update - Thursday 9PM

Stephen update - Thursday 9PM

Thank you guys again so much for joining me on this emotional roller coaster and for the prayers for Stephen. Please keep them up as I think we are finally starting to get God's attention. Stephen is starting to show signs of slight improvement. I so hope and pray that this is just the first step of many in the right direction.

Thursday 9 PM update from Stephen's mom Chris:

"Well, I think he's looking better than this morning. They have hardly suctioned anything out of his vent tube, his nose hasn't bled since before our meeting, and he is warmer. It really looks like there is less edema. He is only negative about 40 ccs, but his BP is up, and that would fit in with fluid moving back from his tissues into his bloodstream.

He was awake a lot of the afternoon, and more alert than yesterday. We upped his meds again so he will get some sleep tonight.

So, we'll see what comes in the next few hours, days..........."

 

[Karlynn]

Janet, thank you for keeping us posted. Stephen and his parents continue to be in my prayers.

 

[Harrybaby666]

He's In Mine Too!!!

He's In Mine Too!!!

Hi Janet,
I am continuing to keep the good prayers and thoughts going!!! Harrybaby666

 

[gijanet]

Stephen update - Friday AM

Stephen update - Friday AM

I hate to sound like a broken record, but thanks again for all of the prayers. Please keep them up. Below is this AM's update from Stephen's mom. She usually gives a late evening update and I will post that when it comes in. I do hope it brings better news. Thanks so much again.

"I guess it's a mixed update. Stephen's oxygen is down and his sats are up, so I was encouraged by that. But his peak pressure is high. His nurse last night thought there is a clot in the tube, but they haven't been able to get it out by suctioning. One of the docs (not the transplant card) thinks it's because of the "rapidly worsening lung disease over the past two days". uuugggggghhhhh!!! But, if it's that, why was the peak pressure better until about three hours ago? The chest x-ray looks about the same as yesterday. Yesterday we were told the right lung was "wet", which made sense as Stephen's got a lot of extra fluid on him. This doc said today that it was bleeding in the right lung too. I'm going with the clot theory until proven otherwise, myself.

He's negative about a half liter of fluid for yesterday, and we expect to get even more off him today. Blood cultures drawn Tuesday are still negative - hopefully will continue that way!

So, we want negative cultures, lots of fluid removed by dialysis, and a chest x-ray that looks better tomorrow............."

 

[Monty]

We are praying!!