Sunday Afternoon 1:30pm
Eliza is on her way home! Thank You Jesus!
Saturday 030125 3:30pm
Thank you Jesus! What a sweet precious little girl!
Saturday 030125 11:40am
Done, just in post opp until they bring her back to her room
Saturday 030125 10:39am
In Surgery
Friday Night 022825 11:30pm
Update:
Unfortunately, over the last hour and a half Eliza has had chronic vomiting out of nowhere. So please be praying for that to stop. It’s caused her to have several desaturations, going blue, etc… thank you for the prayers.
Friday Night 022825 7:30pm
Update:
The surgeon rejected the surgery because once again there was issues regarding anesthesia. They have her on for surgery at 10 AM tomorrow.
Friday Afternooon 022825
Update from Gina:
Eliza received another round of her routine seizure, medications, and it definitely looks like they’ve controlled the seizures that we came in here to control. I am waiting to talk to Dr. Grant, the neurologist later, and we will see what he is thinking. Downside is, she’s just completely asleep. No personality, not awake, but at least she is not suffering anymore. G.I.
Her surgery is due at 4:30. Be praying that she is able to handle the anesthesia, with someone like Eliza there’s always a higher risk of something going wrong.
She is still having subclinical seizures, meaning when she’s asleep. The medication‘s do not seem to be stopping those. It does explain why she is having trouble learning new skills, when you sleep that’s when your brain moves things into long-term memory, etc. her brain is seizing when she’s sleeping, so she’s not able to categorize these things properly. It also explains the skill regressions that she keeps having. We have now confirmed that she’s had generalized seizure, meaning she’s seizing all over the brain. And with her current medication regimen, the breakthrough seizures seem to primarily be focal seizures. She also has various other presentations of seizures that we’ve had confirmed. The EEG has been extremely helpful in identifying what is going on, and how to help her to the best of our abilities.
You are invited to join us Monday night at 6pm in the High School Room to pray for the White family.
Friday Morning 022825
Jamie posted this update on her social media this morning:
Eliza is in the hospital due to increased seizures, now 20-30 per day. Unfortunately with Lissencephaly and epilepsy, she is never seizure free, but we need her to have less. Doctors are making big adjustments to her medications causing discomfort, vomiting, and mood agitation. We are working to stabilize her so she can return home, but after several days here, she’s feeling miserable. Today, she is also having surgery on her GJ-Tube, and we hope her body will tolerate the procedure well. We appreciate your support and prayers during this time.
Thursday 6pm 022725
Update & Prayer Request from Gina (Jamie’s mom):
“Eliza is going to be going into surgery tomorrow to get a slightly bigger GJ tube. The one she has now is causing skin breakdown, and is completely raw and bleeding. There’s also really bad green smelly discharge. After surgery, she will come back here.
Last night, she threw up the on boarding dose of Onfi, the new seizure medication. Unfortunately, she had it in her system too long to dose again. She was having too many seizures in the nighttime, she required a third dose of rescue Ativan. She’s stabilized somewhat. And has only been having some breakthrough seizures at this point. However, after maxing out the Keppra, the Lacosamide, and then we will be titrating up (increasing to the next dosage at 2.5mg each) on on feed.”
Wednesday 022625
Prayer Request from Jamie:
“We ended up in the ER, and were admitted in the middle of the night. Eliza was having too many seizures. Please pray we can find a new regimen and get her stable enough to come home. She is currently doing an EEG (brain scan/monitoring for more seizures) ❤️ Thank you for praying. Pass along the info to anyone else who might pray for Eliza. I love you and thank you!! 🙌🏻”
