Given all that Joy has gone through in the last 52 days, it’s hard to imagine what a harder day would look like, but at least emotionally, today is that day. We are back in the room having ended our therapy day early after Joy’s OT vision assessment. I had been planning to run home to shower but I’m not now, because Joy is crushed emotionally at the moment. While the OT sight specialist cannot formally diagnose, we learned two very hard realities from their thorough assessment. That Joy has vertical diplopia (double vision up and down) which is harder to treat than horizontal, and even more troubling, that she has an upper right quadrant visual field deficit in both eyes which means it’s the result of brain damage. Joy’s been in tears since and we came back to the room to try and rest. I guess if there’s any positive element to the assessment it is that the right eye seems to see as well as the left, it’s just that the eyes don’t align and that neither has sight to the upper right quadrant of their field of vision.
Twenty minutes have elapsed since I wrote the above paragraph, while nothing has changed in the seriousness of the visual revelations, the tears here have turned from sadness to long awaited relief - Joy’s G tube was just removed! When we heard yesterday that a surgical consult was necessary for the removal of Joy’s tube, we envisioned general surgery. Turns out it meant a surgical PA coming in and basically pulling on the tube till it popped out and then putting a dressing over the site!
I’ve talked about rollercoaster days in the past, this one may just take the cake.
We so appreciate your faithful and heartfelt prayers and support. Do continue to pray for healing of the damaged areas of Joy’s brain impacting vision and language. Thank you for standing with us, we thank God for each and every one of you. 🙏❤️🩹