Friday Lillian had an appointment with her GI doctor. She still has some thrush in the mouth. Her steroids ended Sunday, praise the Lord. That poor girl was a mess on that stuff. Her inflammation markers have returned to normal. Her hgb is normal again. That being said, I realized today, that we've been giving her triple the dosage of iron she was supposed to be getting...#winningatmotherhood. She was getting it 3 times a day originally and when they sent in a new script, I noticed the dosage change but not the frequency. I've had to reach out and share that with GI, which is unnerving...but it happens. No harm done I guess. She has her third treatment Wednesday and then we will space out to every eight weeks. I had really hoped and prayed they would say we didn't need to continue, but alas, kids don't go into remission in the same way adults can. He also stated this isn't something she will be able to stop. So, we keep on keeping on. He was not concerned with her (what I consider) excessive weight gain and he wasn't completely pleased with her bowel movements so I'm going to have send some photo evidence from now and then two weeks after her next treatment. Good times.
Her antibiotic breathing treatment is on back order for eternity. Everywhere. So now we will be getting it in a compound form that we will have to mix from U of L hospital pharmacy and I'll have to figure all that out on Wednesday while we're there.
Our insurance tried to help us with not having to pay out of pocket for her stomach medicine, but to no avail. We will still have to pay out of pocket and wait for reimbursement. Not what I hoped for, but at least a great deal of it will be reimbursed in time.
I was on the phone about an hour and half this morning trying to work through all these issues, plus getting her albuterol neb med order changed to the correct amount. It's been a long day. We had chiropractic appointments this morning as well, so a long busy day. I hope all this craziness made some sense.
We have upcoming kidney and lung doctor appointments in April, so lots of trips to KY coming. Keep us in your prayers.
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