January 28, 2024
1 Year +341
Day 5
Today brought another addition for pain…dilaudid. Her PCA button pushes increased again yesterday. So her pain team is hoping with the addition of the dilaudid, she can self wean a bit off the PCA. I don’t think I noticed that yet today, but the added meds did help some, so maybe tomorrow. Tate is now needing some oxygen support while sleeping. Migraine was worse today when upright and she had a little more leaking from her back. Not a day that feels closer to discharge, but a day that hopefully led to Tate feeling a bit better and getting the support her body needs.
Tim and Keira came by this evening and we attempted to ”wash” Tates hair with the rinse free shampoo/shower cap combo. Can’t say the outcome is super desirable, but her hair smells good!
I had to share this memory that popped up from 8 years ago….after several months of Tate being sick with mono, constant fever and fatigue, masses of mouth ulcers and nonstop acute illnesses, she received the dx of pneumonia and double ear infection. I had hoped this was the reason Tate just wasn’t getting better. Instead, what followed was the yet unexplained disease attacking Tates brain and a year + of pleading with the medical world for help while we watched Tate slip away. Ivig is what saved Tatum’s brain and brought her back to us. I’ve never seen this memory. It was a bit of a gut punch as we sit in the hospital still dealing with medical complications from unknown components of whatever disease(s) are still not uncovered. I’m thankful though that 8 years ago we had no idea what was in store. We weren’t alone then and we aren’t alone now.