"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Friday, November 30, 2012

Here we go... #3!! Early AM seizure with fever.

Luella's pulse ox alarm went off about 6:20 this morning. I ran to her room and her O2 was in the 40% range, heart rate over 150. I rolled her to her back and she was blue. Jim ran to get rescue meds and by the time he got upstairs things were improving and she was coming out of it. NO rescue meds given! Although we can't be sure how long the seizure lasted since I don't know how quickly her O2 dropped and the alarm alerted. Luella was hot. I took her temp - 101.7.

When she woke up yesterday (Thursday) after having the seizure Wednesday evening, she was coughing quite a bit. So we are dealing with another cold. I'm sure it was brewing on Wednesday and that's why she seized on Wednesday night and now this one with the fever.

Please pray that she can get through this illness quickly!!

Wednesday, November 28, 2012

2 Seizures This Week

Luella had a seizure Sunday night and another one tonight. I was a little worried after the seizure a week before Thanksgiving that landed her in the ER... wondering what the next one would be like. Were we on the road to harder to control seizures again? On Sunday her seizure was SO fast! She got her rescue med and it was done in just a couple minutes! That was a relief. Tonight's seizure didn't seem so fast.

I had been gone all day for a meeting with a certified GAPS practitioner over 2 hours away. It was a good day. An emotional day though, re-telling Luella's story and dealing with my insecurities about starting Luella on such a strict diet. I got home and within 45 minutes my little peanut was having a nasty tonic clonic (grand mal) seizure. I lost it! It's a good thing Jim was home to run after the medication and oxygen tank. I just could not keep it together. I'm sure if I had been alone with her I could have handled it but I was so glad I didn't have to. Luella was shaking so hard and foaming at the mouth with blood (she must have bit her tongue). I hate, hate, hate watching those seizures!! They are so violent-looking. It wasn't letting up and I thought a second dose of midazolam would be necessary. I just put my hands on her and prayed, "God make it stop!" and it was done. Thank you Lord! Burke had just been going to take a shower and he told me later that he prayed right away in the shower for her seizure to stop too. What a sweet boy! I actually thought this seizure was longer then the one on Sunday but Jim informed me they were the same length. I guess it just seemed so much longer because I hate watching her convulse like that!

After holding her for awhile I put her down for the night. Hopefully she will wake up rested and ready for a morning at school.

Thursday, November 15, 2012

Big Bad Seizure

Luella had a seizure today. That ended a 12 day seizure free run. She actually had a seizure on Nov 3rd that I didn't blog about too. That one happened at the Water Park of America - we thought we'd take a quick weekend trip to the cities and have some fun. She only got in about 10 minutes of fun at the water park before that seizure. :( She did enjoy the Mall of America the next day, especially the Lego Store!

Today was the big bad seizure! Luella and I went to school (ECFE) this morning. She had a great time playing with the corn in the sand box! Afterwards we ran a couple errands and stopped to get groceries. I had noticed her being a little "off" all morning. Just a little spacey and quiet. Luella wanted to push her own little shopping cart and we proceeded to get the groceries. A special friend was getting her groceries too and Luella had fun seeking her out down the aisles. We got to the frozen food aisle and I looked at her clutching the handle of the cart and her head turned around looking backwards starting to have a seizure. I picked her up, grabbed her meds and rushed behind the customer service counter where I could lay her on a rug. I had to give her two doses of midazolam and some oxygen since her O2 was dropping. Finally within about 10 minutes the seizure appeared to be stopped. I called Jim so he could meet me at home and we headed home too.

At home Jim held her and she appeared to be breathing really strangely. I checked her O2 again and it was dropping again! We got some oxygen on her and just watched for awhile. I was so sure the seizure was done at the grocery store. She had all the signs of being done. She rubbed her nose and yawned. I was sure she was done! Now, we didn't know what we were seeing. She started getting blotchy (like she does often during a seizure), her breathing was getting more labored, heart rate was elevated. O2 wouldn't stay up on its own when we took the oxygen away. Her eyes opened a little and she wasn't "seeing" us, her hand started posturing and then we knew we needed the ER. Off we went!

At the ER things seemed to be a little better. She didn't need the oxygen but when they poked her to try to start an IV and she didn't even flinch we knew something was going on. At that point they just gave her some more midazolam IM (inter muscularly). She started looking so much better -  not flushed, breathing normally, normal heart rate. The ER doctor spoke to our neurologist. Our doctor suggested adding an additional dose of depakote (one of her usual daily anti-seizure meds) just to get her through the rest of the day since we weren't really sure why this had happened. Luella was so drugged and hard asleep she couldn't take an oral med so they decided to give via IV. They called the anesthesiologist to start the IV and he did great - got it the first try! Luella did cry hard during the IV placement but she went right back to sleep then. It took awhile for the meds to be ready to hook up to the IV and once it was ready, Luella was actually starting to wake up. The nurse started the IV. Luella was rustling around and wanted to roll to her tummy. I was trying so hard to keep her still but somehow she managed to escape and hit her hand on the bed and blood was everywhere! I had heard a "pop" and the IV was out. It was such a mess! So since Luella was more awake they cleaned her up and we just ended up giving the meds orally then.

The doctor was pleased with how well she was doing so after just 3 hours in the ER we were able to go home. She did pretty well for awhile at home but then got sleepy and cranky. We made it through supper and she got to bed. So far she's been very restless tonight and crying a few times. Hopefully she will sleep now and be ready for a better day tomorrow!!

Thank you all for your continued prayers. Please pray that this seizure was a fluke and we don't see another one like it!!

And sorry for the long post. I use this blog as kind of a diary about Luella's seizures - something I can look back on and read the details again later.