February 6, 2026
Day 4
Happy Olympics! Tate and I watched a little figure skating and caught some of the opening ceremonies. She was so sleepy so said she would nap during the commercials.
I got her down to the atrium to check out the Olympic celebration they were having and we saw our sweet prescription pet friends, Michelle, Steve and doggy Michaela. They run the prescription pet program here and bring so much joy into the hospital with all the dogs.
One of our beloved nurses, Rachel, introduced Tate to “Sumo oranges.” Whenever we have Rachel she brings a giant sumo orange and she and Tate have an orange “date” It’s the sweetest thing.
Here, we have so many caring people that need zero explanation of what our life consists of. These last 3 admissions starting in December have been especially draining. Our medical family here steps in and keeps us going. I’m feeling so thankful for our nurses and childlife, the volunteers and non medical staff too. We can find a friendly face around every corner. And since they “live” here with us, theres no catch up needed. I have so much gratitude for the people that meet us exactly where we’re at.
No big medical news today. Weaning steroids, lots of sleeping, very pale, lots of discussions, still using IV dilaudid with her other pain meds and migraines continue. Care conference is trying to be coordinated for early next week. Echo looked okay, knee ultrasound is showing “effusion”…fluid/inflammation which brings talk of more steroids (they don’t ultrasound all the joints. With systemic disease if one has inflammation, it’s assumed the other painful joints do too.) Still waiting on send out labs to come back which will bring a rheumatology plan with them.
I’m feeling absolutely spent. These “chronic” admissions are the ones I dread with everything in me and fight with all I have to keep her home from. Theyre exhausting physically but especially mentally and emotionally. Trying to keep everyone heading in the same direction while teaching about every nuance that is Tatum is the hardest thing I do. And tonight, I’m so completely over it. SO happy tomorrow is Saturday. Less people, less talking, less brain power, fewer decisions to make, less everything. Hoping for more peace and quiet.
Tate is on constant CR monitoring. Her respirations get very very slow at night down to 3/4/5. That means she alarms All. Night. Long even set at 8. Wish me luck in convincing the night providers that she is actually fine and we can turn her alarm settings way down .