Not sure how to update you all succinctly. I'm a little confused myself about what's happening here....Let me start with the blog entry I wrote right before we brought Ava Gray to the hospital on Tuesday (for those who aren't yet up-to-date):
Ava Gray's seizures have been hard to keep under control. About once a month she "grows out of " her current levels of medication and then we have to get her blood drawn to find out where the levels are so we can safely increase them again. The volume of the "better" medications is finally so great, that they're asking us to admit Ava Gray in the EMU (Epilepsy Monitoring Unit) so that they can monitor & record her seizure activity while she's hooked up to an EEG machine. (The purpose of this is to help them figure out where in the brain the seizure activity is coming from and therefore what type of medication would best help her). Her admission to the EMU is scheduled for tomorrow at 2pm. After she is admitted and hooked up to the machine, they will temporarily take her off her seizure medications and then I will be pressing a button every time she has a seizure. Tomorrow night may very well be a long one. Please pray for her (for peace - that she would not experience a lot of fear during her seizures), and for me (that I would also not experience a lot of fear, and for endurance).
Here's what's happened since then: The medical team kept her on her regular meds throughout the first afternoon and night (Maybe to capture her baseline brain activity?). So instead of it being a super-stressful night of no sleep, it was a relaxing night of more sleep than usual (thanks to friends who kept Havyn at home). Bam. PRAYER ANSWERED ! The next morning, they decreased her dose of one medication but left the other medication the same. Since then she's had one or two small seizures (20 or 30 seconds at most). Here's the crazy thing: when they went back to look at her brain activity during these "seizure" episodes, there was no seizure activity going on in the brain. That could mean one of two things:
1. We haven't captured an actual seizure yet (her more serious ones include her not breathing for a minute or more, her SATs dropping down incredibly low, and her face turning blue or grey while her gaze is fixed).
2. What we've thought were seizures this whole time, were (and are) actually something else. Our nurse today told us that about 50% of the kids who come in with what the parents think are seizures, are actually a severe (fear) response to acid reflux and the chronic vomiting that goes along with that. Ava Gray sure has had her struggles with emesis and keeping food down, so that's definitely within the realm of possibility.
We're asking for prayer on a few fronts: 1. That unless God is choosing to heal her here and now, that Ava Gray would have a more serious "episode" while she's hooked up to the EEG, so we can determine if she is actually having seizures or not. 2. That if the team makes the determination that these are NOT seizures, that they would take her off her anti-seizure meds while she's still there under their watch. 3. For wisdom & endurance during Ava Gray's stay at the hospital (sleep for all parties involved, and for the girls to be sheltered from the strain of hospital-life). 4. That if this is GI related instead of seizure activity, that God would show us how to care for her and help her. 5. Most importantly, for Ava Gray's complete healing.
I apologize for the length of this email. Forgive the babbling of a tired mama. : ) And bless you guys for your prayers. Not the first time I feel carried by invisible arms through stormy weather. Hope you're all having a good night!
-Jules
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