October 8, 2013 - Home Again!

October 8, 2013

Good news = Bella got discharged this afternoon and we are all home together again! Her BP did not drop as low during IVIg today so we did not have to pause it at all. We're not sure if it was the fluids I pushed on her all day or her body becoming accustomed to the foreign antibodies.
Our good friend Chris Luckey came by for a long visit. He's one of Bella's big brothers from the LH class of '06. Should any boys ever try to mess with her, she has a LOT of brothers that will come to  her defense! Ms. Gilcrease from Lockhart Junior High also stopped by with some cheer.

Unfortunately, Bella's Dallas neurologist called me at the worst possible time - just before the nurse came in with the discharge papers. Because I've been so anxiously waiting for her call, I spent as much time as possible on the phone with her. I trust her expertise, knowledge and opinion and really wanted to talk to her. However, she did not have the best news. She is afraid that Bella does have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) because of the length of time since her initial diagnosis, a relapse is likely to indicate CIDP. Dr Castro has a CIDP patient whose only relapse syndrome is ocular (aka vision problems) so although Bella did not experience any loss of motor skills, the double vision is cause enough for concern. Doc wants to see us in her office urgently so we will trek back Dallas for an appointment on Monday 10/14. At least we'll be going opposite of the TX-ou traffic! On the phone, she suggested that Bella have IVIg monthly for the next 5-6 months. I'm not sure that any of us - especially Bella - can handle that so we'll see what things sound like next week. We're all scared and sad. I told Bella once we got home about the call and then have questioned that choice for the rest of the evening. I really burst her bubble :( but I didn't want to hold this from her like I did last week. She's so very sad. We all are. Our hearts ache. We don't  understand why we take one step forward and then a huge step back. For now, we are trying to focus on and be grateful for the fact that Bella is home, she is strong mentally and physically, and she can see! We will change our diets, our lifestyle, whatever we have to in order to keep her healthy. Please continue to pray for her and for all of us.