Unfortunately, we do not have happy news to report. Evangeline took another turn for the worse this afternoon. She was off the BiPap mask and doing well and then, in a matter of 20 minutes, her oxygen level tanked without an obvious reason and the team could not get it back to suitable levels. Therefore, she was returned to the BiPap machine and given a rescue medication. It is possible she had some sort of seizure that was unobservable.
At this time her breathing looks good and she is resting comfortably. However, she cannot live her life under constant sedation. The primary PICU doctor has requested ENT take a look down her throat to see if there may be any physical cause for the upper airway problems. The chances seem quite slim that this is the case. It appears that the problem may just be neuromuscular in nature meaning that Evangeline’s brain is not properly maintaining her airway to breathe on her own.
There have been quite a few tears this afternoon in our household and at the hospital. The future for Evangeline is unclear. Given her severe neurological problems it is difficult to see her surviving much longer.
In the midst of writing this Evangeline crashed and nearly when into cardiac arrest. There are very few options left. We have called our family to have them come say good-bye. Please pray for strength, wisdom, and comfort. Jesus, be with her, Amen.
Carrie Barrett says:
I’ve been keeping up day by day and am so sorry to see how quickly things changed. My thoughts are with you all.
Lexie Centers says:
Oh, my heart truly breaks for your family. Know that I am praying for wisdom and God’s supernatural peace to surround you all.
Much Love,
Lexie
Kelly Clark “Joyous Cardinal” says:
May our Heavenly Father heal Evangeline’s and your families physical and emotional pain during this time of transition.