Update for this week

After last week's update, things have improved. She finally slept some on Friday morning, and has been sleeping at night and napping some during the day since. We stopped the Onfi completely, and it's working its way out of her system. So far her seizures haven't returned either, although the past few days she's been more twitchy, so I wonder if they are finding their way back possibly.

I also got a call last Thursday that she has a UTI as well, so we started antibiotics for that. Her urine grew pseudomonas, which is a very bad bacteria, and it's always a bit scary when it's a bad one like that. She's been junkier with lots of secretions and needing extra oxygen too, and working a little more to breathe (but not struggling), so we are keeping an eye on that as well.

My body shut down this weekend. I got a terrible migraine on Saturday that hasn't seemed to want to go away completely, and I've just been so tired from the past few weeks. Johnny is also tired, and our house is just weary. Please pray for rest and refreshment for all of us, as this can take its toll on our family.

Medication Changes Not Going Well

We are needing some prayer here. After fulling getting Waverly off of her old medicine (Banzel) that landed her in the hospital, we got her back to where she was before starting that medicine, which was still having too many seizures. So we went with Plan B, Onfi. It's similar to another medicine she's been on for a while, but was growing tolerant to. We started the Onfi on Friday. She went with no seizures on both Saturday AND Sunday! We can't even remember the last time she did that! It seemed to be working, and she was smiling a TON. But, the smiles were a little too much. Like she couldn't STOP smiling. And then it just got worse and worse. 

She now has not slept in 2 days. She's bursting into crying fits at the slightest noise, touch, or stimulation. She's literally laid in her bed all day, and can't stop moving. When we try to pick her up or talk to her, she cries. She's still super smiley too, but it goes back and forth from extreme smiling to extreme crying. And she can't.stop.moving.

Her brain is just waaaaaay in overdrive. It's like there's a terrible neurological storm happening. Her bottom lip is swollen because she keeps biting it. Ya'll, it's bad.  

I have been in touch with the doctor, but we just are unsure what to do. Obviously, the Onfi has helped her seizures, but she can NOT be like this all the time either. She's exhausted. We're exhausted. It's breaking our hearts. This is a medicine we can't abruptly stop, so we are working to see what we can do. We wanted to give it time to work but she is miserable and I just can't let her suffer like this much longer.

I snapped this picture last night of her meds while I wondered, "Am I poisoning my daughter?" The way she is reacting to these latest meds, it seems like it. We are at a loss of what to do. Without medication, she is seizing so much. With it, she's still seizing too much. And with the new ones we've tried, she's having terrible reactions.

Please, pray for her. Pray for her brain to calm down and let her rest. Pray for the doctors and for us to have wisdom. Pray for mercy. 

Home!

We are so thankful that we were able to come home this afternoon. Waverly continues to have lots of seizures, but they aren't constant, so we felt it best to bring her home as we wait to try a new medicine. We ended up discontinuing her newest one that we started last month, as we suspect it may have actually made her seizures worse. But we still need to do something about the ones she's having, since they are still more frequent than we'd like. So, back to the drawing board. 

Please pray that her seizures would be manageable here at home until we can start a new med. Just tonight, she had over 30 minutes of hard seizures. (And had 10 minutes of seizures earlier today, just minutes after we were given or discharge papers, before we even got out of the door!) 

We are pretty tired from the "seizure watch"-feeling like we need to have eyes and ears on her constantly for every little sound and move. So prayers for our strength are appreciated too. 

Too many seizures = hospital stay

Waverly's seizures have had a sharp increase since Friday, which also happens to correspond with the latest increase of her new medicine, Banzel. On Monday evening she had a cluster of 7 tonic-clonic seizures in 20 minutes, and then woke up Tuesday and had about 10 in the first 1.5 hours of being awake. We knew she had to been seen, so we loaded her up and took her to our local ER. They checked her over to make sure she didn't have some sort of infection causing the increase. All that checked out fine, so they admitted her to the PICU to help break the cycle of seizures and work on adjusting meds and a plan. They have been consulting with her neurologist at UVA on the plan. She's had some pretty hardcore meds in the ER and late yesterday afternoon to try to stop the seizing, which knocked her out. As soon as she woke up, though, she started seizing again. Today, she's seized pretty much every time she's been awake, but has slept most of the day (from the seizures). She woke up for about an hour around 5:00pm today, but had a big 8 minute seizure at 6:00. She almost needed more rescue meds but stopped, and is back to sleeping again.

Please pray for wisdom on which medications to start/stop, for her brain to respond, and for the seizure cycle to break. Pray for rest for me here in the hospital with her, and for the rest of the family with the added stress. Pray for her doctors and nurses and other caretakers. Pray for the others here in the PICU. I don't often get the chance to talk to other parents or people up here much since everyone is in their own rooms with their kids, but pray that I would be able to reach out to those who need it, and just in general for those here.

Happy Easter!

On a day like today, where Waverly struggles so much with hard, hard seizures, I am especially thankful for Christ's resurrection. He defeated sin and death and all the pain and sadness that comes with that and promises new life. Without that promise, this life would be hopeless and void of meaning. But thanks be to Him and His indescribable gift. We long for His return when He will truly make all things new. Our prayer this Easter is that you would know the one true God, His love for you, His grace and His salvation. 

Still beautiful, even after just having several hard seizures. 

With her little chick from Great-Grandmom.