Post cardiac electrophysiologist!

So before i get started. Some of you might be scratching your head trying to figure out what kind of cardiac doc she went to. She went to one that deals with the electric in the heart. Your sa node is the body's natural pacemaker and it creates the electricity that you have to pump it with. ;) So breif review there.
Well her ekg was as good. So was the bp, temp, and hr. We would have liked to see it higher but she has to show her doctor that she can perform for him at anytime. So dr P came in and said she looks beautiful. He asked her if he could listen to her heart. She said NO! MY HEART! He said well can i listen to your juice? NO MY JUICE. Then he said can i tickle your belly. She said NO MY BELLY HURTS! Lets just say.. she was not into letting him touch her. He listened to her ticker finally after she gets to put the stethescope on her heart. Said it sounded good. A smidge different but nothing crazy! So yeah. Then we sit and have the talk. She is devloping on an amzing level. But unfortunately her brain HATES communicating to the rest of the body. Her highway gets blocked too much. lol. Your brain needs to send the message to the sa node so you can have a beating heart. So if you dont get that message then you dont get that. So he then discussed pacemakers. I have always known since she has been diagnosed that this might be an option for her. My husband and I have thouroughly discussed this also. He said we can do a trial and error. The hard part is kenadie has a rare disease that might not even have a true label for now. With all her bloodwork going ape nuts. So if it gets deemed mitocondrial then she can not get the pacemaker because then it would be a fight with the cells and the machine.One accomplishment we made today is the doctor agreed that kenadie is passing out from her hr going from 140bpm to 40. I know i am n ot crazy just wish people would listen.
If it is her immunodefiencey disease then we can get one. However she is not eligible unless it gets really bad or we can keep status quo until she turns 3. She can not get one right now because they will have to recrack her chest open put the drain tubes and all that stuff in. Her body can't handle that right now. When she turns 3 they can put it in through the artery. So we obviously would prefer that. We now have to do heart monitoring every 3 months for 1 month long. So we can make sure we dont have any deteriation going on that we dont know about.
So much relies on the bloodwork and the testing that is going to be performed in the next couple of weeks. There are some very hard decisions that will be made. I pray for the strength and the comfort and pray for my support system. Being a mother to a special needs child where there is not even 15 in the us like your child is so hard. I will try to type more tomorrow after the pedi.. I am just so tired and emotionally drained.