For Crying Out Loud!!!!

Today… well, and yesterday… has been the most AWFUL I have witnessed Santana to be since he has been home to this new life.  His tone is really high.  Sometimes you can’t even bend him at the knees.  His spine is rotated so he can’t even sit in his wheel chair without his brace because his back doesn’t sit flesh with the chair.  He is stressed out. Agitated.  Any noise that is quick or out of the blue freaks him out and he cries.  He cries and cries.  In this video I am posting from youtube, it is only a short cry.  But ANYTIME being touched today, he cried like this.  He is trembling.  He is breaking out into a sweat.  It hurts. It breaks my heart because he is in severe pain. I have no pain meds.  Motrin doesn’t do a thing. I can’t.  I can’t listen to this.  How can I be a good mommy if I can’t fix it. I don’t know what the deal is.  I can’t help him.  I can’t understand my own son!  I don’t want him to live like this.  It was said that maybe things are waking up and he is starting to feel what was obviously painful to begin with (his hips out of socket).  Great if he is waking up. BUT NONE OF THIS ONE FOOT IN THE DOOR CRAP!  I can’t do this.  It isn’t fair for him.  I ask for you to pray to take the pain away.  To relax him.  His body is so tight and stressed.  I am scared for him.

The only change is his meds.  The neurologist called on Thursday to say his depekote level was 4!!!!!  It needs to be between 65-100 to do it’s job.  2 weeks prior to this blood work, he was 36 which was low.  We had to move the Carefate (used to coat the tummy for his ulcer) 2 hours away from giving him depekote.  That should have brought the level up if that was the problem.  But no… His high dose brought in the number 4!  SO they wanted to raise the dose.  I said NO.  If it isn’t working.  Get him off!  So we are slowly taking it down.  But as we go down we have to go up on his seizure med called Lamictal.  I guess Depekote raises lamictal levels so they have to try and keep a balance.  But I don’t think this is the cause of the seizures.  I think the pain is.

I don’t understand why he does so good and crashes like this.  But I do know I have a God MUCH bigger than this.
I worry.  Deeply worry.  But there is another little girl that has been on my heart today named Trinity.  She is in the hospital due to o2 levels dropping.  She is on a vent right now and her picture on facebook breaks my heart.  She is a doll baby and I ask for you to pray for Trinity and her mom Meredith.  This is what her mom had posted on facebook:

Trini is not doing well at all. Her blood gasses are going up. They should be going down. She is at 87. I think it is supposed to be under 50. High CO2 can cause brain damage. The nurse said we aren’t at the point yet where the Dr. think we might lose her. I’m so scared that we are going to get to that point! Please…everyone pray!!!!!

Thank you for all your prayers and for believing!!!!