Tomorrow we head to SLC to visit Haven's doctor at Primary Children's in SLC. We're expecting a 5 hour drive up there , 3 - 4 hours for the appointment is what I have been told by the Oncology department, and then a 5 hour drive back home. Considering we will most likely have to be up there for a few days for her surgery we will not be spending the night this time. Plus we have a little doggie that needs us back home. I have talked to them in Oncology and am still not able to bring Rohnin in with us. Which makes all of this a lot more stressful - especially since Hopkins never said I couldn't bring Rohnin in. The only place she couldn't go was isolation rooms. Which Haven was out of by the time Rohnin was born.
We've been searching and trying to figure out what to do. We've just never had this problem before and when dealing with new doctors and chemo and surgery we definitely don't need another stresser. Luckily we have a most helpful neighbor. Kris and I went over to talk to Tara about possibly helping with Deez on Tuesday and to our relief she said YES! :)
Next our plan with Rohnin is that either Kris or I will stay out with her during the appointment. Maybe take turns so we can both meet the doctor. We might possibly be meeting another ROHHAD mom in SLC. She has offered to help with Rohnin but I'm not sure Rohnin will be able to hang out with someone she doesn't know or has never seen. So more than likely one of us will stay with her for the 3 - 4 hour appointment.
Never the less, this will be a very very long day! Almost too long to think about. We are hoping we can get all Haven's treatments moved down to St. George although it didn't sound like it when I spoke to SLC. I just can't see doing this every 6 weeks.
Once we recover from the trip I will update as to what is going on and what our next steps are.