Today has been a relatively good day. After experimenting with a couple new drugs overnight it appears the doctors have found one that is improving Evangeline’s brainwave activity. Now the plan is to attempt to get her on a dosage that will help her to maintain the improvements. We are all encouraged by this new plan. The strain of so much time at the hospital is catching up with Mom and she could use some good rest.

Please pray that the new treatment plan continues to work and for Mom to get some solid rest. Thank you for your continued support!!

Today has had its ups and downs. Evangeline did not have a great night as she was not tolerating lower levels of oxygen. After the oxygen levels were increased early this morning, she was able to rest comfortably again. The doctors indicated that they try to be fairly aggressive with decreasing the oxygen so this was not totally unexpected. The neurology team consulted with Mom and Dad this morning. It was suggested that Evangeline get on an EEG to take a look at how her brainwave patterns have changed these last few months. This was welcome news since we had determined that we would like an EEG. This afternoon shortly after Evangeline was hooked up to the EEG, the neurologist came for a visit. He indicated that Evangeline was experiencing near constant seizure activity. While this was not surprising, it was troubling. However, the neurological team was encouraged that they had, at the least, discovered a reason for what was presenting clinically. Therefore, tonight Evangeline will start a test dosage of a drug that we all are hopeful will improve the neurological activity.

One specific prayer request tonight – please pray for both Mom and Evangeline to get some good rest.

Thank you for your continued prayers. Our family is deeply appreciative of your care for us!!

Today has been a full day with some very positive steps. First, Eva has tested negative for the Coronavirus! Mom is thrilled by that! Second, the doctors have been able to decrease her oxygen to a level where she has been able to resume her feedings. She has successfully eaten late this afternoon and now begun her supper feeding. She is still not consistently stable at this lower oxygen level, so our guess is that we will not be weaning further tonight. She has been awake for a few hours early this evening and shown some neurological activity, which continues to be concerning. She is resting for now, which is a good thing!

Evangeline had a good night. She slept well! We are awaiting test results from a Coronavirus test (Mom and Dad are confident she doesn’t have it, but protocol right now is to test everyone as you may imagine) so that the full protective equipment requirement can be eased off. Mom can’t even be around her without wearing it. Hopefully results will be available today.
Eva is still on pretty high oxygen, but she is comfortable! Assuming aspirational pneumonia, she is on an antibiotic. In order to get home she will need to be weaned down on oxygen and successfully hold down some meals. 
We appreciate all the prayers!
Mom and Dad had to take Evangeline to the ER this afternoon due to constant seizure activity. X-rays show possible aspirational pneumonia. They are also testing her for other possible causes of infection. She will be transferred to PICU sometime this evening and will be in the hospital at least for the short term. Prayers for her and the rest of our family would be appreciated. Middle daughter took it especially hard that Mom and Eva had to go to the hospital.