I know it's been a while since I last updated. As quickly as things were going good it seems they went bad. What makes it most frustrating is that it is dejavu from two years ago. Two years ago I saw a lot of symptoms that were unexplained. When I went to the very people who were suppose to help us (doctors), to find a cause even if they couldn't fix it, we were ignored. They did the patronizing appointments and gave us opinions that were as good as the average Joe who is NOT a doctor. We finally found someone who was willing to help and found the cause. A cause I might add I already knew it was but no one would believe me. That is until she ran tests and came up with undeniable evidence. But as always no one is cautious with my child. And so here we are. After Eli's surgery after Thanksgiving, no one ran tests to check the bloodflow in his arteries that go to his brain. This should have been a given. But no one did anything. In March Eli could not straighten his neck. It was stuck. If I knew how, I would post the video of him complaining it was stuck (being technologically challenged stinks to say the least). Anyway, a couple weeks later he started complaining of pain at the incision site where they did the surgery. He wasn't just complaining a little, he was complaining a LOT. So I thought it best to get him checked out. The general surgeon who helped with his last surgery ordered it. While the graft area looked great, his left vertebral artery is now missing. The surgeons did NOT expect this. The general surgeon then called the adult surgeon who did the surgery. He gave an explanation of what he thought could have happened, which he said the steal was so great the artery clotted itself off. Meaning he has a massive clot it his vertebral artery. But then proceeded to tell me that it was okay. Um NO!! So we got another doctor to order a test to check the left vertebral artery. As always that doctor had no idea what he was doing (or talking about) and told us he needed a different test and we should go back to neurology. Our question is WHY IS NEUROLOGY NOT FOLLOWING MY CHILD ALL THE TIME!!! While the symptoms directly relating to the Subclavian Steal truely are gone, he now (ever since the neck got stuck) has recurrent headaches (none resulting in vomiting, sensitivity to sound or light, etc.), sporatic slurred speech, dizziness, lack of focus, etc. Every single person has a different answer for what it is. Ninety percent attempt to give a simple answer.
I am angry and completely discouraged. I really could get to the place of acceptance with his medical situation if a doctor was following him (someone besides the pediatrician and cardiologist), being cautious, not blowing us off because of an inaccurate opinion. I could get the place of acceptance even if it's something that cannot be fixed. Even if the answer is "I don't know". At least he would be followed. And to be completely honest, I'm angry with God for not giving us the doctor who is going to follow him.
I could type so much more, but no one really knows what it's like to be in the position of watching your child and have them be in some sort of pain nearly EVERY DAY of their life. No explanations, no help, NOTHING. Everyone says to just go to a different doctor. I so wish the answer was that simple. But we have reached out to dozens of doctors with NO HELP. I'm angry.