From Ashlee Roby (Kyla's auntie)
I’m just going to provide an overall rundown of the last two days, it’s very up and down. Despite any set back, God is still showing up & performing His miracles with Kyla Mae. We’ve been very busy & hands on with her, of course. I will also include how today will be structured for surgery.
- Kyla still hasn’t been able to conquer applesauce. Her tongue doesn’t have the movement or control necessary to do so. Again, this is due to nerve damage. The brain stem also controls this (amongst several other things) and is part of her surgery today. Hopefully the surgery helps. Otherwise, it’s up to her damaged nerves to heal when their ready. Please pray for this. She can still have ice chips and water swabs. She has also developed thrush on her tongue also causing some lack of sensation. It is not abnormal for a child to develop this when their immune system is overwhelmed, this is one of the first things to hit the back burner, per say.
- The care team here has been amazing, following Kyla’s night terrors that she wakes up screaming from, they put together and developed a plan/routine to put her on to ensure a restful & calm night. Last night and the night before, it has worked.
- Night before last, while getting her bath, Kyla told us stories, picked and played and even giggled some. It did us all good to see her smile.
- During the new developed sleeping plan for Kyla, she has maintained a very high heart rate. She’s lingering from 125-150, and peaked as high as 178, all while resting. All tests and blood work has been ran. No medical explanation. Kyla has still been asking lots of questions, and is remembering the accident… she’s even talked to her Daddy, on her own will about the details. Even though she is sleeping hard and is “out of it”, she’s had so many night terrors reliving the accident that her body has somewhat entered “survival mode” or “fight or flight” and is kind of stuck there… Sometimes when we experience trauma, our brains will block the memory to protect us, but the body remembers. “the body keeps score”. Kyla’s mind and body is remembering. The subconscious state is manifesting physically, resulting in the high heart rate. This is a psychological effect. Please note, all labs, tests, and other numbers for Kyla have come back fine in regards to this. Please pray for healing of her mind & body and the psychological effect this is having on her. And for our hearts as we navigate the conversations about the accident.
- PT/OT- here is a PRAISE REPORT for you all.. with lots and LOTS of work & assistance (and some crying), Kyla got out of bed, took TEN STEPS, all for the reward of getting in a wheel chair & taking not one, but TWO laps around the PICU. While this is a hard challenge for her, it has really motivated her. To boost her spirits, they did so just now this morning, before surgery to boost her spirits & ours. Again this isn’t an easy task at all, but God has made it possible!
Kyla’s vitals have thankfully remained stabilized These last few days (other than increased HR mentioned above), but remains exhausted. Her feeding tube has to still be in place for her to receive the nutrients she needs.
Now let’s talk about surgery today at 12:30pm.
- Kyla has the HALO still in place. She will have this at least 12 weeks minimum.
- Surgery today is restructuring her neck (right now all is broken, only prob 2 ligaments actually keeping her connected..) This will require 2 metal rods.Then they will remove 2 ribs from her, to use & a (sterilized) bone from someone else, he will then use these to restructure and fuse together giving her the support she needs, while reconnecting all this & the brain stem back to her spinal cord.
This is an extremely high risk surgery… all are high risk & vital parts of the body. The surgery itself will take 2-3 hours, with anesthesia and recovery, we expect 4-5 hours total. The Pediatric Neurosurgeon is hopeful and confident for the recovery & outcome of this surgery, given Kyla’s strength and determination despite the setbacks and challenges she has faced. Today is a VITAL day in Kyla’s recovery process.
Right now we are in a waiting game until surgery is complete and she wakes up. Prayer warriors, we ask you to gear up and help us pray for journey with surgery, and for her nerve damage. The nerve damage is not something the doctors can correct, it has to happen on its own. We are all exhausted and on edge, so please bare with us with responses etc. thank you everyone for everything you’re doing for Kyla Mae and our family.
KYLA MAE is such a FIGHTER, & is NOWHERE near out of the woods. HOWEVER, we will take these milestone victories and jump these hurdles, and forever praise our Father for sparing her life!
DON"T STOP PRAYING. GOD IS HEARING OUR PRAYERS. KYLA IS STILL EXTREMELY CRITICAL AS SHE IS ENTERING SURGERY TODAY
Our KYLA MAE needs your prayers more than ANYTHING right now. The doctors have made it clear hope is not lost, but this is an extremely hard fight for her. But we know who OUR GOD IS
Eddie of course is a mess right now, if anyone wants to reach out, please feel free to reach out to me or mama or our family.
Those of you that know me, know that she is my baby girl..
Please don’t stop praying for our girl & us during this time. The mental, emotional, physical and financial toll this is taking on the our family. The Lord will provide.
Fight baby girl, FIGHT.