April 24, 2013 - Need Prayers

April 24, 2013 - Day 18

5 PM
Need lots of prayers! After Bella was able to walk (supported) so far yesterday, she was not able to bear weight today. Her right leg is not responding as it was before. Both the physical therapist and the occupational therapist expressed concern and encouraged us to contact the neurologist. When neurologist called back, she said to head straight to the ER. With GBS, they are concerned that the increased weakness could quickly spread to her lungs and require that Bella be placed on a ventilator.Brian is taking her back to Children's right now (I'm not sleeping well so have been very fuzzy-headed today) while I stay home with Faith and Brody. Assuming she is admitted, I will take over hospital watch in the morning. Needless to say, I'm scared to death.
God, I'm really not this strong!

8 PM:
Brian and Bella are in a room in the ER. It is busy tonight so took a while to be taken back to room. Brian has had to repeat the entire progression of her symptoms - back to first signs of weakness prior to weeks in hospital - to everyone who comes in room and he is frustrated with that. They have contacted the neurologist who's on-call and are waiting for him/her to see Bella. No real news yet. I'll update again soon.

11:08 PM:
Well, the day started normally enough and then it just went to hell. We had some crazy loud storms last night so Brody ended up in bed with me and Brian had to go comfort Bella. She woke up in more pain than she has recently but nothing that alarmed us. However, at therapy she was unable to walk with her walker – where yesterday she took so many steps. Both her OT and PT expressed concern and encouraged us to call the neurologist. I called at noon and waited for a return call. Meanwhile (I had forgotten to mention this previously), Bella had an appointment scheduled at BOCH at 1 today with the neuro-opthamologist. She started complaining of double vision on Saturday just before she got released from BOCH. She was diagnosed today with Cranial Nerve 6th Palsy. The doctor assured Brianthat it’s a very mild case and classic with GBS. The doc fitted Bella for a patch (she got a pink one) that Bella has to wear for 2 hours on one eye and then switch to the other eye - for a week. The doc says this may help with her headaches too.

So back to the neurologist. I got the first return call at 4 from the nurse for the neuro doc (Dr. Said – awesome doc) who had treated Bella in Children’s. She asked a bunch of questions and said Dr Said’s specialty is epilepsy so Bella’s aftercare had been transferred to Dr. Castro (which I knew) who specializes in GBS. She was contacting Dr. Castro but said to be prepared to return to the ER. About an hour later, I got a call from Dr. Castro’s nurse who told me we needed to get to the ER. She said don’t delay and she even actually said “don’t dilly-dally” because they are very concerned that this new regression and weakness could quickly move to her lungs. Brian and I decided that he would take her in tonight and I will relieve him first thing tomorrow. (all of this is kind of a repeat from my earlier post)

While Brian and I were packing for the hospital, Bella cried with Faith and told her that she was scared she is going to die. My poor baby! And then when Bella saw me crying, she dried my tears and comforted ME. She is really an amazing child!

The ER was busy so it took a while for Bella to be taken back to a room. After answering a million questions, they decided to give Bella an IV. The %$&# rookie missed her vein TWICE with the IV. Brian said he was about to lose it. Finally they brought in a more experienced person and got the IV in place. Bella said they should have trainees practice on dolls. I agree! All this time, they had told Bella not to eat because they are expecting her to have another MRI. Finally at around 9:30, they allowed Bella to eat and said they were admitting her to the hospital but first she needed to be evaluated by the respiratory therapist. As of 11 pm, they are still in the ER waiting to be moved. If her breathing is not good, they'll put her in ICU. So we wait and we pray.

Midnight:
Breathing okay. She's moving back up to 10th floor (neuro floor) now.