For those who aren’t on FB…Ruby had a horrific seizure on Thursday, February 8th and she and I went to PCH by ambulance. By God’s grace, her nurse, Chante, was just walking out but turned at the same time I did to see the seizure beginning.
Chante, was literally airborne as she dove over the ottoman for the oxygen mask (which was right beside Ruby) while turning on the tank to full blast as I grabbed the rescue meds. It was a frantic time as Ruby was gasping for breath and when we got her on her oxymeter her oxygen was in the 60s.
Did I ever mention before that I hate seizures? Oh how I despise them!
The group of first responders who arrived have been in our home multiple times for Ruby and clearly think she’s wonderful. The minute they started into the family room one called loudly, “RUBY!!” They are always such a blessing to our souls!
They administered a different rescue med, then another dose and since she continued to seize they gave her more in the ambulance after consulting directly with the ED doc. While she seizing at home her heart rate went up to 279!! Yes, that was her pulse on the paramedics oximeter during the seizure! On our oximeter was up in the 220s, as well. The paramedics were extremely concerned at her heart rate…
I had not posted on FB that she was having a seizure as I was very overwhelmed by all this seizure meant (perhaps more another time about that), her heart rate, and yet, after many hours of her not waking up or responding in any way Emma texted that I should ask for prayer on FB. It was highly unusual that she was sleeping so long with no response at all – even after a horrible seizure.
So I went on FB and I’m so thankful I did as friends around the world began praying for Ruby. After a couple more hours she woke enough to respond with a soft and very weak “ha” to me whispering “I love you” in her ear.
Her little “ha!” was all I needed – Ruby was responding(!!) and she was discharged and we got home in the middle of the night. Thank you to all who prayed.
She continued to sleep the entire next day until just before dinner. She woke on her own, after all, a girl excited for her red carpet debut can’t let a horrible seizure hold her down. She got a quick bath and all gussied up for Night to Shine. It was obvious she was exhausted and felt lousy, but she did get to go until she threw up, so she and I headed home.
Saturday she threw up all day (the seizure, the rescue meds and the new dx all wreaking havoc)….and Sunday was more of the same…
It’s been a very long few days…in between calls to docs, laundry, laundry and more laundry, holding her while she vomits, calls and emails to medical supply companies and a very long nephrology appointment yesterday. This mama is pretty overwhelmed and very, very tuckered.
Chante told me this week that she thinks I probably have PTSD from Ruby’s seizures. I agreed – it takes me about a month to return to being comfortable after she has one. Chante had not been here while Ruby has had a seizure but commented, “They really are HORRIBLE!”
Since many prayed Ruby would be wake and be able to go to Night to Shine….here’s a peek:
Amy, a nurse, was Ruby’s buddy for the evening. Amy has been her buddy at church events before and was so happy to be her buddy at Ruby’s debut NTS…
Jubilee’s buddy was a young man who attends another church but volunteered to be a buddy. As it turns out Elijah plays football with him at the prep school not far from our home. The prep school allows homeschoolers to play on their team, such a blessing!
It’s obvious from the video below that J thoroughly enjoyed hanging out with my Jubilee – so very precious to this mama’s heart! And I’m going to take a wild guess that J will make a wonderful husband and daddy some day! (And, oh my gracious, he’s only 15!)
And then there was Johnny-boy. When he got home he said, “Thank you mom for signing me up. I had a blast!”
Our church had almost 250 NTS guests from all over the valley….with hundreds of vetted and trained volunteers to help. Night to Shine really is such an incredible blessing. I love Tim Tebow’s heart for special needs and I sure love our church!
Thank you to all who whisper Ruby’s name before the throne of Grace. She is truly a miracle and we cannot thank the Lord enough for the privilege of her being ours. Her life has gotten more complicated and so if you think of us, please continue to pray for her.
Linny I am praying for sweet Ruby…I’m so sorry she is struggling after this last horrible seizure. I hate seizures too. And that really does make sense you would have PTSD from experiencing so many of these life threatening things with her! It is so traumatic to go through one seizure…I can’t imagine what all you’ve seen. I love y’all and am praying…
I love the videos! Such happy faces. Continuing to pray for Ruby, and for you, Mama!
My heart feels so much for you and your beautiful Ruby…I am committed to wrapping you in my prayers, day and night, Thank you for the absolute honor it is that you allow us to pray for your treasured girl.
Sweet girl! Praise God for HIS provisions! Never a coincidence!!
I’m so thankful everyone had a wonderful time at NTS!
They all looked amazing!!!
Praying you get some rest!!! Peace that passes earthly understanding!!
Praying, praying, praying for all of you!!!! And for lots of wisdom for the doctors!!!