We have all been sentenced to death. Without a doubt, we are all dead men walking. Some people live longer than they want and some people are taken to their sentence before being fully prepared. No one can really be prepared for theirs or their loved ones life to come to an end. This week was my wake up call that Santana’s sentence. We think that our kids will bury us someday… it is only a normal thought, we are much older and we all think we will just die peacefully of old age. But it is not the case. I can walk out this door now and never return to live life on this earth. We don’t know when our time will come to an end. We just know it will. I have come to realize that I spent MANY hours which add up to weeks of research to find the perfect cure for Santana. To find what can make him better. But I now know that I can’t control his time on this earth. I can not be the one who decides how long Santana can be kept alive. I always knew God was in control and thought if he KNEW the desires of my heart, it would be given to me. He man not win this battle but he will win the war. Someday he will see my Jesus face to face and run whole. So now I know I need to enjoy his time on this earth as he is now. He doesn’t have a long time. So with this time I wanna hold him and love him and focus on the family as a whole and not just, WHAT CAN I DO FOR SANTANA?! 
Santana is supposed to be released today. Have not heard yet. A week. A WHOLE WEEK in the hospital. =( Basically this is what we know. Nothing. The end. Okay, seriously. So they wanted to try biPap on him. Which is used for Sleep Apnea and it forces air and oxygen into the lungs to force the lungs open. They were using 4 liters of oxygen and he did great! THE PROBLEM?!?! He had a mask that was WAY to big for his face and it was sticking in his eyes. They found a smaller mask but just over 2 days with that on, he shut himself down. He laid there and did ABSOLUTELY nothing and not even open his eyes. It looked like he slipped away. I hated it. Then they took it off to deep suction and his face was red , worst than when Tyree had his big sun burn. It was horrid. Just then his doctor walked in to see the look on my face and she took him off it. She agreed with me that his quality of life is much better than how he breathes.
She showed me his CT Scan of his chest. The results were horrifying. His spine has everything shoved over into one place. His organs do NOT have room to expand. They will not be able to grow in this little place. His heart is shifted over quite a bit along with his lungs being cut off. Which would bring Orthopedics into the picture. They said they were going to bring an ortho team in and look at him but never did. I think he was too sick to do anything about it now anyway… We have an appointment coming up in the next few weeks. It isn’t an emergency. Nothing is an emergency. But with his air supply being cut off, he is requiring more oxygen. He looks like a fish out of water. He is pulling really hard to breath. But he is ok. To him it is normal. He is MUCH happier with out a mask all up in his face.
So basically our last conversation with Pulmonology was she agrees to keep him at his comfort level. Yes a trache is a possibility. Does she think it will help with all the congestion sounds? Do not know. It could be further up behind the nose. It would make it easier to suction him, but can leave a major opening to major infections. And if they trache him most likely he would be vented with it. The problem… he can become dependent on the vent. So needless to say, he is not going to live on a machine on my watch! If it came down to that, it for sure would be time to let go. Opening up his rip cage with back surgery isn’t going to take away the congestion either, but it may get more oxygen into those lungs. So it has good results… IF the surgery goes good. They said he very well may NOT come out of that surgery alive or without a vent. But if I had to toss the dice, either I do nothing until his organs are so squished he breathes his last breath or I make him comfortable and go for the surgery and hope for the best. Even if he didn’t make it out of surgery, I am not sure it would be a loss. He wins no matter what. More or less… I win if he survives and he wins if he passes to heaven. I can’t imagine life without him. But slowly I am preparing myself for that.
His pulmonary doctor DOES want to do a brochoscopy (however you spell it) to see what kind of blockages are going on. She said she would wet herself if she did it now. I laughed and gave her a WHY look. Apparently you get vented for that procedure. They take the camera down to see what is going on. Then they squirt Saline in the lungs and try to catch the pool of crap a the bottom (not pneumonia… it looks possibly old). They then test it. Sometimes that stuff can cause bacteria and that can cause the fevers. So they will pull out as much as they can after they get the test samples too. He is put completely out for this. Again… he may not wake up and he may not come off the vent. So it is only a test not surgery and it is a life risk for him. But I think it is worth it. I hope and pray they find something simple that can be removed or something and his breathing can improve. It still doesn’t take away what the spine is doing to the lungs. But there are multiple issues going on with his breathing.
I feel bad for him laying in that stinky hospital bed. I feel bad for my boys too. Not only did Santana get robbed of his whole life. But Jett and Tyree got robbed of a child hood. The balance is hard. And the last week I keep running through my head how I can describe to Jett Santana’s death when that time comes. That part is harder than actually losing Santana. I lost Santana a long time ago. Now I just wait for him to truly enjoy the afterlife as now he has one foot in the door and one left here which is not fair for him. Maybe God didn’t take him because I wasn’t ready, I would not have handled it. So now I prepare myself for those final good byes. It stings to to think about it. But I have to get my mindset there. Now I can just enjoy Santana and the family and not worry about going all over the country for the next big thing. I have learned to let go of what is of this world… and grasp the hand of God and trust him with all my heart. Don’t get me wrong.. .this doesn’t make me strong and there isn’t a day that goes by that I don’t cry or think about what is ahead of us. But I know I have the Almighty I can hang on to and walk through this valley that has turned into a cave. I can only pray that Santana is comfortable. Not well, not healed, just comfortable. That is all I want for him.
I am sure I left a lot out, but I am not completely together yet. If you have any unanswered questions, please ask. Gotta go get him to BRING HIM HOME NOW!!!!! WOO HOO!
The question is: How will you live out your death sentence? Are you Alive or are you going to LIVE?
Some Songs that hit home for me today, they are playing in order on his playlist ….
He’s My Son – Mark Schultz
I’m down on my knees again tonight
I’m hoping this prayer will turn out right
See there is a boy that needs Your help
I’ve done all that I can do myself
His mother is tired
I’m sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he’s not just anyone
He’s my son
Sometimes late at night I watch him sleep
I dream of the boy he’d like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He’s so tired and he’s scared
Let him know that You’re there
CHORUS
Can You hear me?
Can You see him?
Please don’t leave him
He’s my son
You’re still God
Masters Commission/Frontline
I know you haven’t left me
But I’m still fighting
My heart has been struck Lord
It’s left my soul crying
But I know,
That your promise says
You prepared a Table
And even in the presence of my enemy
I know…
You’re Still God
You’re Still God
I don’t understand
Why you let this go on so long
All my questions why Lord
I leave them all to you
For I know
That your promise says
You prepared a table
And even in the presence of my enemies,
I know…
You’re Still God
You’re Still God
I’ll let nothing come and seperate and take my love from you
For it’s in you is where I rest
And where I hide
Let your freedom reign in me
Let your freedom reign in me
Let it reign Lord
Let me be free
You’re Still God
You’re Still God
You’re Still God
You’re Still God
And From Mercy Me BRING THE RAIN
Bring The Rain
MercyMe
I can count a million times
People asking me how I
Can praise You with all that
I’ve gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It’s never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there’ll
be days When this life brings me pain
But if that’s what it takes to
praise You Jesus, bring the rain
I am yours regardless of the clouds that may
loom above because you are much greater than
my pain you who made a way for me suffering
your destiny so tell me whats a little rain
[1st Chorus]
Holy, holy, holy
Holy, holy, holy
is the lord God almighty
is the lord God almighty
I’m forever singing
Uncategorized | Santana's Mommy | 
October 9, 2009 7:18 pm | 
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