Imaging studies revealed that surgery to "unclog" the blocked arteries in her brainstem would not change her longterm prognosis, and we learned that Kyana had "LOCKED-IN SYNDROME" (LiS). See https://rarediseases.org/rare-diseases/locked-in-syndrome/ for more information on people with this condition.
Today is March 16, and Kyana cannot speak verbally, she is bedridden in ICU, although soon to be transferred to a long-term acute care facility. Monday March 12, she had her DBS removed, a PEG (feeding tube directly into her stomach) placed, and a tracheotomy placed. She is on 30% ventilator support, which we hope she can eventually be weaned off of. She can answer yes or no questions with vertical eye movements, but she has the confounding factor of having bi-polar disorder. This doctors are working on getting her back on some sort of anti-psychotic medication since questioning today did reveal that she is already hearing voices.
I have personally seen her twitch her mouth and raise her arms a little bit if the medical team is applying enough noxious stimulation, but she does not currently have the ability to make these movements at will. The doctors do not think that she ever will. But we know that nothing is too hard for God (Jeremiah 32:27) and that with God, all things are possible (Matthew 19:26)
We don't know how this journey will continue to unfold, but we are working to support Kyana and each other. We are hoping to get her more specialized support for her LiS at the Shirley Ryan Ability Lab in Chicago, Illinois (https://www.sralab.org/) , and then we would love to be able to have her at home (wherever that might be) instead of a long-term facility (aka nursing home). Since LiS is such a rare condition, no one seems to be able to give us estimates on how much all of this will cost except to say that it will be "A LOT". Max cost per day for room & board at SRALAB is $2080. Home care for Kyana will be a 24-hour 2 person job. At potentially $23/hr, even with significant help from Medicare-Medicaid, the out of pocket costs is still astronomical.
My family hopes that you can and will support us as we work to get Kyana the best help that man can provide as we await God's miraculous healing. I want to see my sister smile again, to hear her laugh again, and to watch her clap her hands and stomp her feet again.
We appreciate any financial support that you can provide, and we thank you for the prayers and emotional support that you have already provided and will continue to provide for us.
I will continue to post updates, but my mother Cynthia Jackson will be handling all monetary donations to cover Kyana's medical costs as they arise.
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