July 31, 2013 - A Long & Trying Day

July 31, 2013 - Day 116

Wow! Today was physically and emotionally exhausting! We left for Dallas at 9 AM and got back home at 11 PM. Bella's appointment was at 2 and took 4.5 hours! I expected 1 hour at the most. Wow! The most disturbing and shocking thing is that Bella has lost another 4 pounds. She admitted to the hospital on April 7th at 80 pounds and weighed in today at 69 pounds. She's grown an inch and a half so she is looking more and more like a twig! Dr Castro is extremely worried about Bella's weight. She brought in a nutritionist who gave me some pointers on how to get more calories and fats into her food (whole milk, put heavy cream in her spaghetti sauce, milkshakes or other supplemental drink 2-3 times per day, no drink with food - only after, etc). We've been instructed to make sure Bella eats every 1-2 hours while she's awake for a minimum of 8 times a day. Bella heard all of the concern and instructions so hopefully she will cooperate.
They ran an EKG, an extensive pulmonary test and drew a sizable amount of blood for testing (they're testing about 8 different things - I can only recall a handful right now). Dr Castro is thorough to say the least and I appreciate that. She brought in physical and occupational therapists to evaluate Bella and prescribe modifications for school. I asked about horse therapy because that was recommended by another parent and both the therapists and Dr Castro felt it would be wonderful for Bella. Now I have to find a good, local facility. If you know any place in the south Austin, Kyle, Lockhart, San Marcos area, please let me know.
Dr Castro is still concerned that Bella could have CIDP (chronic GBS). I thought for sure we were in the clear from that or maybe I was just blindly hoping. During the physical exam, I noticed that Bella still can't tell the difference between up & down when the doctors move her toes & fingers while She has her eyes closed. I don't believe this is dramatically uncommon and Dr Castro explained why that could indicate CIDP but I cannot recall right now what the explanation was. I'm still so scared! Bella and I were both in tears at the thought of having to return to the hospital again. Doc said if it became necessary, she would not do IVIg again because Bella relapsed right away after that. Instead, Bella would be admitted and have plasmapheresis again. I cannot fathom that yet. I can only pray, hope and beg that the worst is behind us and Bella's weakness was due to fatigue and her weight loss.
I'm trying to remember what else we heard but I'm so tired I can't think. Because of the concern with Bella's weight, we have to return soon - which in the neurology world is about 7 weeks. We go back on Sept 23rd. They are getting us in on a Monday so we can make the trek up Sunday night and stay overnight.
Please keep praying for Bella and for all of us. Unfortunately this appears to be far from over.