What a rollercoaster ride this year has been! From pancreatitis in March, to rejection in July, then crazy steroids, ER in August and October, more pancreatitis inpatient in October, followed by EBV/mono inpatient at the end of October, and finally an admission Black Friday into December for fainting and low magnesium, followed a week later by vomiting, low magnesium, and higher liver numbers, plus a biopsy as inpatient. New diagnosis is NASH, which is non-alcoholic fatty liver disease that has escalated to causing damage. Now we have to deal with a high magnesium, low carb/sugar diet and glucose monitoring. Thankfully, her sugar numbers are low enough that insulin is NOT in the mix! Still, frustrating all around.
And, during this whirlwind of issues, I had to send poor Pamela to take William for his physical, and then to the podiatrist to have his toenail removed (it was infected underneath)!
There are also some new doctors on the team, ones that aren’t very familiar with Pearl as Pearl (and not just some quick report or lab numbers). So the male doctor didn’t want me in the room during rounds, but then he didn’t want to listen to what Pearl was trying to say. He basically kept telling her that if her symptoms are her norm, then she doesn’t need to have them checked, even though she and I had both told him this was different! And he keeps insisting we get neurology to give us a better migraine management plan, even though they won’t allow the go to drug because it’s in the ibuprofen family, and we’ve tried just about every other drug out there that doesn’t interfere with her other meds – with no success. Totally frustrating for Pearl and me!! And now we’ve added endocrinology to her many specialists!