Todays news

Today I brought Skyler to Children's Hospital to have the voltage on her left lead adjusted. The electrophysiologist changed it from 5 to 1.5 in hopes to stop the intermittent diaphragmatic pacing. I'm not to sure if this is the root cause of all her ongoing issues or if it's just another symptom.... or a fluke. The Dr. has no idea either. He showed me her x-rays and pointed out the left lead and how he thinks it must be close to the nerve. He thinks it's being paced directly. Meaning, the lead is hitting or is too close to the nerve rather than the diaphragm being stimulated from the heart itself. (the bottom of the heart rests on the diaphragm.)

He did do a lead test on her though. He turned the voltage up very high to see if he could get her stomach to "bump up and down." But it didn't. Her Dr said, "I don't understand it. I know it happens. I saw it myself (skys video) so I don't understand why it's not doing it when I test the lead." My child is a mystery. Now, knowing the phrenic nerve runs from the diaphragm to the neck area I thought for sure that was what caused her intermittent neck pain, but he didn't think so. He didn't give me a flat out no, but he scrunched up his nose and said he didn't think so. Only time will tell.

I really hope that this fixes all her problems! I also hope that the docs really start listening to me now. We have proof something is going on and it's the first thing I suggested back in Dec when all this shit started happening. Had they just lowered it then, rather than testing it and dismissing me, we wouldn't be dealing with this. Again, I truly understand that they are doing everything that's right... I just wish they would think a little outside the box. Not everything is classic textbook, especially children.

Let the waiting begin