Thank you all for your positive thoughts and prayers today. We are home now with Jenelle and her spinal tap went well. Our only problem was that Jenelle started to get a rash of some sort when she woke up from the anesthesia. Quickly, she was given IV Benadryl and it disappeared as quickly as it started. The nurse said the rash was commonly seen with the form of anesthesia they used on Jenelle. Jenelle did not have any breathing problems and we were out of there by 4:00! Jenelle woke up pretty quickly and we really didn't keep her "horizontal" as long as we should. Since being home, she was a little cranky after her bath. I think she may have what they call a "spinal headache", but otherwise is moving around fine.
Unfortunately, Dr. Chang's nurse was incorrect, and we are going to postpone our visit with him until February, as it will take 4 weeks to get the results. The procedure was done in the new "short stay" unit at CHOC in the building we watched them build from our room in the PICU two years ago. The facility is lovely and we were quite impressed with all the changes. It's been so long since our last admission to CHOC (two years) that thankfully we were able to really enjoy the new changes.
Earlier this morning, Jenelle had her annual eye exam with Dr. Ching. If you recall last year he was unimpressed with her tracking skills and said that she was still cortically blind. Today he was thrilled to see her progress and agreed that she is finally tracking! I asked him about the difference between today and last year, and he said that last year she really didn't have much control of her tracking and there was no consistency. Today, she followed the toy he showed her and even reached out to touch it. That was quite a thrill for Dr. Ching. She still has cortical visual impairment, but he thinks with her continued seizure control and maturity, she will start seeing better and better. Dr. Ching will see her in another year.
And to end on a funny note, I told Dr. Chang that we had just visited with Dr. Ching, and he replied, "Well after this, I'll send you to Dr. Chong!" Thank you again for your wonderful thoughts and prayers. I'll keep you posted when we have the results.
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3 comments:
We are SO GLAD to hear that everything went well! We've been thinking about you alot! Take care!
My son is also having a spinal tap in 3 weeks to be tested for a neurotransmitter disease. I'm Emeric's_mom on the Child Neurology Epilepsy forum. I remember chatting with you in the past! :)
My name is Carmin David. I love reading your updates, it provides me with points of reference I can use at my daughter's neurology appointments.
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