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Sky pretending to be an Electrophysiologist. Her dolls pacemaker is being tested.

Skyler enjoying the snow. Two thumbs up for a great day!

I hope I am not cursing myself by updating such great news prematurely. Fingers crossed I am not. Yesterday was such an emotional day for me. We had a scheduled appointment with the cardiologist and electrophysiologist at Children's Hospital to figure out what was going on with Sky. The results from her holter monitor didn't offer any clues. It showed her heart and pacemaker to be working nicely together. There was nothing abnormal in the results. Her Xray and ekg were also normal. They kept telling me they think it's just post-op pain and we should give it a little longer. I explained my reasons for not thinking that was the cause... she is suddenly choking on food, has pains only when sitting up, only while at rest, never when up and running around, she complains the muscle in her neck suddenly hurting, her pacer area will suddenly burn, and her chest will feel like it's squeezing followed by an ache. Again they said it could be post-op crap.

I asked them if it's possible the pacemaker is pacing the surrounding muscles (including the diaphragm, which explains the sudden choking). They didn't think it was. They were right in assuming as much. See, they have a way to test that. They change the settings on the pacemaker for just a minute and increase the output. If she had pain then they would know the surrounding muscles were being paced. She had no pain. BUT then Dr. ***** said something that made me question the results. She said the muscles would contract during the test... then she looked away in thought and said, " unless it has to do with the position she is in..."

Ahhhhh the position! Did I mention it's only when she is sitting? So I did what every good mother would do... I got all teary eyed and asked, "why can't we just turn the PM off for the day? If she has pain then I will know, without a doubt, that it's not the PM. I just don't think I am asking for much!" And so they turned it off. Happily. I mean they were great about it. I literally said to Dr. *******, "I am sorry I am acting crazy. I just need to know for sure before I can let it go. Please just humor me with this." Know what he said? He told me it's not humorous at all and that I am not being crazy. He agreed with me and off it went. So guess what?

For the first time since Dec 6th Sky has not complained of pain. She went from having at least 10 episodes of chest pain a day to none in the last 24 hours.

I am still not convinced yet. The big test will be tomorrow when she goes to school, but man, I am happy.