If we were in Beaumont, Dr. B would be saying right now that we are on the launch pad.
Mallorie has a new neurologist who seems great, and is willing to work on squeezing her in to see him sometime in the next month. No small feat here, because it's VERY hard to get a neurologist appointment. I hear 9 months to a year is typical. He's very thorough, and speaks to Mallorie in the sweetest baby talk. He's a real "kid" doctor. And very good at explaining things.
He also wants her to become established as a patient with a pulmonary doctor (for the lungs), just in case that is ever needed.
In the PICU, there were a lot of changes made in the electrolyte supplements given to Mallorie, and a new blood pressure medication was added, and these changes will be continue at home, so we have been in touch with the renal doctor's nurse, and Dr. M will follow her labs and we'll visit her if needed. I expect she will try weaning Mallorie off the lasix very soon.
And we'll see Dr. B on Monday, I think, for a post-hospital visit.
The only hitch right now is that Mallorie spiked a temp last night. Apparently, on this floor, they subtract 2 degrees from the reading if the temp is done rectally?? I've never heard of anything like that, but that's what the nurse told me today. She also ran another fever (101 under her arm). I can't remember what they said they do to armpit temperatures. She had some bloodwork done to see if it looks like any infection might be going on, and I guess depending on those results, they will decide if she needs to stay another day or not..
The Trisomy 18 Connection
1 month ago