Post Transplant Day 330
+330
we’ve been home over a week after Keira’s surgery. She’s 3 weeks post surgery. Still sleeping lots! Still having pretty much a constant headache when awake and still has not recovered her memory from pre surgery with short term challenges on a daily basis. Her surgery site is healing well, hair is growing back and Keira is learning to listen to her body and still spends considerable time in a quiet, dark room to combat the headache. She’s looking forward to eventually getting to pick up some work shifts at the nursing home she’s a cna at and taking an online class.
Tate has seen endocrinology, special care, GI and had labs done this last week. She’s had PT twice and is pending combined procedures under anesthesia (if we can coordinate with scheduling) to exchange her GJ feeding tube, undergo a spinal tap, joint aspiration and potentially more. Her GJ is currently not usable as it causes pain. Pain and swelling remain an issue and GI just increased her tpn fluids by another liter as she continues to struggle with dehydration. She is loving having Keira around (as are we!) The last couple days, nausea is back as well as increased pain again in her back and wrists in addition to the standard knees, ankles and bone pain. We are waiting on rheumatology to help figure out the why. We are trying to add in more schoolwork as tolerated and infuse some fun too.
Pics are a mix of FL and little Levi Stevenson’s baptism day and his dads Birthday celebration. This is baby Chloe’s little brother. We loved getting to love on this newest addition while still missing the presence of Chloe. And always love to see Dave, Katey and Lizzie too.