Pouring my heart out...Very confused day...

I am confused at this point and somewhat disappointed in the whole process. I am emotional, pouring my heart out to GOD to let me know where to next. I think the frustration is I didn't get any questions answered and no issue resolved. I really thought we would have a surgery date today. We see Dr. Preston Phillips on Oct 30 in Tulsa to get his opinion. I will also be looking for a physican referral to St. Louis children's, I will start calling them in the next few days.

It was not a good idea to ride the van. I just thought this way I don't have to get anyone to go with me and we will have a Jeremy and mommy trip. We were fine. Jeremy is a good traveler but he does his own thing, which normally includes lots of music toys but I figured it would drive everyone crazy so I opted for the little cow, pig and duck well the duck has this really LOUD Quack (probably why Mr. OCD kept pushing it a bazillion times). I'm totally accustomed to all of these noises but it drives other people crazy. Then he kept wanting to touch the little boy in front of us, he kept asking me tell Jeremy to quit touching my seat belt, tell Jeremy to quit touching the back of the seat. It got stressful on me because I was trying to keep him from driving everyone crazy, I got cranky, Jeremy got mad and bad situation worse, he was tired, hungry and frustrated.

Jeremy doesn't do well with clinic settings, he would check in one place, see a tech who does your vitals, takes you to X-rays, then sends you back into a room with a nurse to go over Jeremy's medical history, move to another room, see a PA, then an anesesthologist, and then finally a physician, Jeremy thinks when you open the door he is finished time to go. Shriner's in Shreveport is not equipped to handle a complex child like Jeremy, they don't have a cardiologist so Jeremy's cardiac history although he is doing great with his heart scares them. Dr. McCall feels that Shriner's in St. Louis or Chicago would be the best and they would refer us, I was feeling good about that. I asked Dr. McCall about the surgery what they would do and he basically said he needs to have his spine fused, not to hope for any correction at all, the goal would to keep it where it's at so it won't progress any more, I was ok with that. I asked him about the spine rotating in and he said, "it is what it is" and at that point I shut down and it didn't matter what else he had to say and I asked no more questions. When the care coordinator came back in to talk about St. Louis, I was handed the number to St. Louis Children's when she called Shriner's in St. Louis they told her they refer children like that to St. Louis Children's. GOD shut the door to Shriner's in Shreveport and I no longer have to wonder is this the place or is he the physican, because I know that is a big NO.

Continue to pray that GOD gives me wisdom into the situation, the physican, facility, procedure. I am struggling. I keep saying it's not fair, why does Jeremy have to deal with so much medical procedures, tough surgeries, it's not fair. It is tough and it's going to be a tough surgery, recovery on Jeremy, right up there with his major open heart surgery.

Here is a pic of Jeremy playing on a tractor. He had fun playing and was very excited at that point...
...