Prayer request!

[gijanet]

Friday night's update...........

Friday night's update...........

Thanks, Monty, and everyone else. Please keep those prayers flowing. Here is Friday night's update from Chris:

"Stephen's CAT scan showed no abcesses or holes anywhere, so that was good news. He went down to the cath lab around 6 tonight, and is coming back up right now. They embolized a small vessel off the descending aorta, and there's another one that was too small to coil or embolize. His filling pressure is 20, down from 35 two weeks ago. It should be under 10. There is a lot of blood in both lungs, but not in pools that can be suctioned out. He is being put back on dialysis to keep removing fluid. (They had to take him off for all his travels.)

We shall see how much less bleeding there is with this one vessel embolized -
the bleeding seems to be pretty diffuse, which fits in with what we were told
yesterday, that it could be the infections causing the low levels of natural
coagulation. Hopefully, the bleeding will slow and stop as the infections
clear up. The Nova 7 clotting factors they keep giving Stephen can help that too.

Oh, almost forgot - between the CAT scan and cath, Stephen decided to throw a little party in his room. He didn't get to enjoy much of it, though, being asleep and paralyzed while they changed his ET tube very, very quickly. But no one had to run for the crash cart, and I could see the monitor and his SATS never went below 88, so I wasn't terribly worried. That's why all those experts stick close to the CICU. I told them, if we have a little more notice next time, we'll have wine and cheese for everyone."

 

[Kay]

Hi Janet,

My heart goes out to you and to Chris and the other moms out there dealing with such heart-wrenching health challenges with your precious children. The stress you are under 24/7 is more than I can even imagine. I pray for healing for these little ones and for strength and peace for the families. Our God is a God of miracles and He answers prayers, so I am praying and believing, in Jesus' name, for total healing for Stephen and also for Katie.

God bless you.

 

[PapaHappyStar]

As a father of one -- hoping for the best for this little guy

 

[gijanet]

Please stop and pray for Stephen this morning..........

Please stop and pray for Stephen this morning..........

and his family. Stephen has taken a turn for the worse. I have a candle lit, and my heart is in my throat this morning. Will update as soon as I know more. I so hope and pray that it brings better news. This morning's update:

"Things do not look good for our hero.

I didn't make it to bed last night, drove back to the hospital at 1:30.
Stephen's lungs are significantly worse, his vent settings are way up. His
dialysis clotted off and was restarted - maybe that's a good sign, that he's
starting to clot off and the bleeding might slow? I haven't yet talked to the
transplant card, but we might have to make some hard decisions soon.

Chris

 

[MichyB]

I'm sorry things have taken a toll for the worse. I hope things start looking better. Sending good thoughts your way ...

 

[Debrinha GT]

It's really sad!

It's really sad!

Hi again Janet, I've been reading all the updates and I'm so sorry to hear that Stephen has had even more setbacks. Do you think the whole thing's causing him any suffering? I remember that during my first surgery my heart stopped beating twice, my kidneys collapsed for 18 hours and ny blood pressure dropped completely. I recall my mum telling me that if the kidneys hadn't started working again before the 24 hours were up, there would be nothing else to be done and I would've been considered dead. Thank God that after having had another two surgeries after that one, I'm still here and doing quite well. Let's keep our faith up because the battle hasn't been lost yet, and hopefully, it won't be. I've just said my prayers as you asked us to. Take care and give my regards to the boy's family.

Débora from Brazil

 

[Shirley]

I am praying for little Stephen and his family. It has to be so hard to see him in such poor health. Here's to extra strength, healing, and TLC. God bless you all.

Shirley

 

[Christina]

Just needed to post to let you know that my daily prayers will include little Stephen and his family.I feel a profound sadness when it concerns such a young member of our VR.com family.
Chris, you also take care, and give our regards to this young boys family. They must be hurting something terrible to see their child this way, and there is nothing else we can do than pray that all will be well.

Hugs,

 

[gijanet]

My heart is breaking ...........

My heart is breaking ...........

yes, again! Stephen's parents have made the agonizing decision to put in a DNR order. HIs mom Chris amazes me with her strength. Thank you for keeping this family in your prayers as they will need them even more now. Below is Chris's update:


"We've put in a DNR order, and everyone is on their way to say goodbye.
Stephen is sleeping very peacefully, surrounded by his beloved monkeys and Muffins, his stuffed dog who had been through everything with him since the spring of '02.

Meredith (Child Life) is coming to help us talk to Jamie (10), Abby (4) and
Laura (2). We will let the family have some time with him, then send them all
home and Beto and I will spend some time, just the three of us. When we're
ready, we plan to disconnect everything, and let Stephen be a little boy again, not a human pincushion, for however brief a time.

It is a difficult day, and will get still more difficult. But we are very
peaceful with all our decisions. We have had almost 12 good years, and we don't regret a single decision. We want to remember the mischievous, analytical, argumentative, kind and loving and caring Stephen, not the sick little boy of the past three weeks. The kid who made barnyard sounds whenever he didn't want to answer a question. The one who worried about his sisters choking on small toy pieces. The kid who knew there was a possibility he would never leave the hospital alive, and hated many of the medical procedures, and still was hopeful and cheerful and pleasant. The kid who played "Cruel to be Kind" and "I Wanna be Sedated" on his Ipod before his surgery. The proud boy - "Look, mommy, I can take my pills while running down the hall!" Who could brace his arms and legs on the hall walls and climb up to the ceiling, and jump down. The kid who could bounce on an exercise ball while playing video games, and still beat his dad. Who had so many stuffed animals in his room that he wanted a sign on the door saying "Warning, room contains wild animals". Who was greatly amused when hospital staff would check with the nurses before entering the room. Whose favorite book was The Daily Disaster, with cheerful topics like the Titanic.

I probably won't post again until morning. We know the thoughts and prayers
of so many people surround us during this time, and we really appreciate that."

 

[PapaHappyStar]

My heart just joined yours

 

[Ross]

While everything looks very bad, it's still possible for a miracle turn around. Do not give up hope. I was there myself twice, so I know it's possible. Everyone pray a little harder, but no matter what the outcome, God is in control.

 

[pegne]

Janet

Janet

My heart is broken. But as Ross said God is in control. I will be praying very hard for this boy and his family.

 

[Mary]

This is a hard journey to make. I pray that peace and comfort will accompany Stephen's family as they travel this road. We are all standing nearby.
Mary

 

[Sherry]

My prayers are with the family. Thanks for keeping us posted, Janet.

 

[ericaj]

peace

peace

I also send my prayers and thoughts for Stephen and his family during this truly, truly hard time. God is always in control of his actions and as hard as it may seem for us to understand he has a reason and plan behind everything he does. Vaya Con Dios - Go With God - he is watchinbg, guiding, and always leading us to better places here and beyond.

Do not give up the hope though, God may surprise us and have many many more years ahead for Stephen. It is just not for us to understand.

In my prayers, tears and thoughts.

Erica

 

[Kay]

What an amazing and wonderful kid Stephen must be. No doubt he has had a profound impact on those who know him. Just reading about him has touched my heart immensely. I know the doctors and nurses who have grown to love him are grieving right along with his parents.

My heart and my prayers are with his family as they go through what surely must be the most the most difficult hours of their lives. May God lift them up, comfort them and give them peace that passes all understanding as they say goodbye to their precious little boy.

 

[gijanet]

It is with a very heavy heart.........

It is with a very heavy heart.........

and many tears that I pass on Chris's latest post from this morning:

"Stephen died very peacefully in his dad's arms shortly after 8 last night.
For a little guy, he sure had a big impact on the world. He is always loved
and will be sorely missed.

Love,

Chris, mom to Stephen, (1/11/1993 - 11/13/2004), HLHS transplant times two, James, 10, Abigail Rose, 4, BAV, PDA, multiple small ASDs, and Laura Alice, 2"

Thank you for all of your prayers as this family tries to pick up the pieces and move forward through the grieving process.

 

[Harrybaby666]

and many tears that I pass on Chris's latest post from this morning:

"Stephen died very peacefully in his dad's arms shortly after 8 last night.
For a little guy, he sure had a big impact on the world. He is always loved
and will be sorely missed.

Love,

Chris, mom to Stephen, (1/11/1993 - 11/13/2004), HLHS transplant times two, James, 10, Abigail Rose, 4, BAV, PDA, multiple small ASDs, and Laura Alice, 2"

Thank you for all of your prayers as this family tries to pick up the pieces and move forward through the grieving process.

Hi Janet...
My heart is really feeling heavy at this time of loss for you and for Stephen's family, I guess the prayer that I said for him last night must have turned into a prayer for god to hold Stephen and his family in his loving arms while Stephen went home. I pray now for the comfort of you and Stephen's family while they get through this very sad time, and that I hope you all will heal very quickly while maintaining the wonderful thoughts of Stephen and holding him dear to your hearts...God Bless You All, Harrybaby666

 

[geebee]

Janet,
I am crying after reading these posts. I feel this is for a number of reasons. The world will suffer for the loss of such a brave person as Stephen. The brief stories on this post shows how special he was and I can tell how much he will be missed. I am also crying because I am somewhat relieved for him and his family that he is at peace and, although short term will be extremely painful, long term will focus on remembrance and happiness. As Harry said, all our prayers must have turned into ones for a comfortable passing with his loved ones holding him as he flew away, no longer sick, no longer suffering, to await the reunions to come.
Much love and smiles always to you and Stephen's family,
Gina

 

[momshell7]

I am so very sorry!!

I am so very sorry!!

How incredibly sad to hear of Stephen's passing. I am glad that he passed peacefully. He had been through so much in such a short time. I am crying so hard right now I can barly type. It brings back all the memories of how close I came to losing my older son when he was born. He was not expected to live. I know how hard it is for me to think about that, I can't even begin to imagine the pain that Stephen's family is going through. They are all in my thoughts and prayers.