Post BMT +153
+153
Day 12
Lumbar puncture is tomorrow morning at 9:30. And then, we are hoping to be discharged. It has been a long 8 months since Tatum and I have loved at home. So, to have the comforts of home IS happy. Leaving this admission the way we are and heading home with way more on our plate than we thought we’d have at this point, stirs all kinds of emotions. There are some discharges that feel complete. The problem is solved and you go home feeling better than when you were admitted or at least knowing that you are working towards healing. This discharge feels very different, so we are working through the emotions that come with that.
Tate is having some extra kidney function labs run tonight as her numbers are off today and her output is low. We are so praying that we aren’t running into another obstacle. They are also testing stool and urine as the nausea, stomach pain and diarrhea are still a huge part of her day. Dr. Kohler came onto service today and we so appreciate his quiet and thorough thoughtfulness in everything he does.
Keira and Tim came today to go with for Tate to meet Gideon, a new golden doodle prescription pet. He’s a love and gave all Of us a needed boost. We took Tate outside afterwards and met up with friends Kaylea and Jess. A fun surprise! I was so proud of Tate. She hung in there for quite awhile. We got her upstairs and she ran a little temp and crashed for the rest of the day. She’s still sleeping and I expect her to sleep through the night. A good exhaustion.
Lots of coordination took place this afternoon to be ready for discharge tomorrow. Specialists appointments on the calendar starting Friday already, Homecare deliveries for tpn& lipids, iv fluids, central line care and enteral feeds start again tomorrow at home this time. Physical therapy scheduled again and back on the calendar. Tomorrow will be spent getting all the medical situated.
There have been some difficult conversations with her team the last couple days. Uncharted waters are hard as opinion takes over when there’s no concrete medical measurements or protocol. We are feeling weary moving into this new but familiar chapter and some days are harder than others to fully lean on the one paving the path. But we also know that emotions are unreliable and that Gods promise to carry us is stronger than the highs and lows of each day. Thank you for continuing to travel alongside us.