Megan had been taking the Protonax, but it sure didn't seem to help any. So on Tuesday I called the GI doctor back and they scheduled an upper endoscopy for Friday, May 13.
Megan had been taking another round of Prednisone and she just finished her two week taper. (Which means she starts off on a high dose and gradually decreases over 2 weeks.) This round of Prednisone seemed to work pretty well. By the time she was out of the hospital, her head pain was virutally gone. But, the neurologist said it was probably time to talk to a surgeon. I was hoping we could see one when Megan was inpatient again last week, but they don't have one on staff. I can't believe St. John's doesn't have a pediatric neurosurgeon. Weird. So, I called the neurosurgeon that the neurologist recommended on Monday to see about an appointment and left a message. On Wednesday, their office at Children's Hospital called me back to schedule an appointment and they happened to have a cancellation the next day, so I grabbed it. Megan and I both were a little nervous about seeing a neurosurgeon and, of course, the possibility of more surgery.
We got to Children's on Thursday, and the first thing we saw was a dalmation dog with a clown party hat and glasses and a big red clown nose on her. She was just the sweetest dog ever. Megan was petting her and I took their picture together. A very sweet way to start the day was meeting the Children's Hospital dog. It actually lives at the hospital!
But then we sat in the doctor's office for 2 hours waiting. They put us in the room and said he's be right in. 90 minutes later I went and asked if something had happened. That's when she let me know that he'd had an emergency and was running behind. And you couldn't have let us know???? Megan was in total pain the whole time and then was getting hungary. His nurse practitioner came in and asked questions about her pseudo tumor, cerebral vein thrombosis and cancer. She looked in her eyes and was still able to see all the pressure in her brain. She was very nice. Then the doctor came in. He seemed younger than I would have thought he'd be, but was very direct and nice (and apologetic for being soooo late). He said it is very common for a pseudo tumor to occur from a jugular being tied off. The doctors we saw at MD Anderson and St. John's didn't think so, but of course they weren't neurosurgeons, so who knows. He asked questions about her last two lumbar puncture's (spinal tap), her pressures, head pain, etc. She hadn't really gotten any relief from the LP's, which is concerning, but he said Prednisone isn't a long term solution, of course. Then he said he would talk to our neurologist at St. John's and together they would come up with a plan. He also said he wanted the notes from the opthomologist that Megan has been seeing. She hasn't seen him in a month, but not much has changed. So, I called his office and got that arranged.
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