"The second operation which is associated with postoperative hypoparathyroidism is total thyroidectomy. This operation is performed for a number of reasons, but because of the close relationship that the thyroid and parathyroid have to one another (including sharing the same blood supply) the parathyroid glands can be injured or removed. This is very rare and occurs in much less than 1% of thyroid operations. "
BOTH of my children are in that 1%. BOTH of my children have low calcium levels meaning that their perfectly NORMAL working parathyroids before this surgery that didn't have ANY disease during the surgery that were REMOVED FOR NO REASON WHATSOEVER during their surgeries (one left in Big B and two left in Sis) were doing just fine and NOW? NOW? My kids have to be on calcium supplements and NOW we have to worry about them being on lifelong supplements if things don't look better in 5 weeks.
1%.... wtf? What are the odds? I mean really? What did I do to piss off some higher ups THAT much? I'm so sick of me and my kids being rare this and rare that. RARE genetic disorder. RARE thyroid cancer. RARE to have all three cancers. RARE 1% chance of this. RARE problems from that.
I want my life back. I want the kicks in the stomach to stop. I want to come here and NOT wonder whether or not I should post the newest screwed up crap because it all just sounds so unreal and screwed up even to me. I want to just come here and post "Hey today we had a normal test result/day and did nothing. That was the highlight of my day". Seriously, I do.
Yesterday the kids' pathology results came back- BOTH of them had medullary cancer. It was THANKFULLY contained to their thyroid and hadn't spread to the lymph nodes so we got it all. I still break down in tears when I think about how close we came. So damn close. I don't know how mamas whose children have full blown cancer do it. I'm just not that strong and they amaze me.
Then we went to the endocrinologist and had all three of us checked out. She read me the pathology on the kids and come to find out they took two of Sis's parathyroid (everyone has four sometimes even five) and THREE of Big B's. NOBODY TOLD ME THIS!!! After their surgeries the surgeon told me that they didn't have to touch the kids' parathyroid and left them alone!!! HE LIED TO ME!!!
If they only left one in Big B then they should have moved it to his forearm that way if anything happens he won't have to have his neck cut again. Instead they have set him up for future neck surgeries.
Today I got the results of their lab tests from yesterday back (I sooooooo need to have them use the lab in town more often! I've never gotten results that fast before!) and BOTH kids are low on calcium and need more supplements.
Oh and just for extra kicks..... I'm developing Cushing's Syndrome and have to have a CT scan on Monday to check for internal bleeding or excessive scar tissue on my kidneys from the adrenalectomy.