September 23, 2026
Days 14 & 15:
Gerald is officially gone! The Gerald episodes were an addition that became a big problem after Tate was admitted. But was also something that was going to prevent us from getting home. Gerald is also one of the most painful things Tate has had on repeat and truly terrible to witness. Lots of gratitude that he is gone!
ID came in today and didn’t love how Tate was looking in that moment. More labs tomorrow am and new cultures if they have shifted again now that Tate is off antibiotics.
Rheum and neuro have had lots of conversations as Tate’s lupus appears to be active once again and she’s having more and more neuro episodes. Sleep study will happen outpatient as there is concern over narcolepsy and cataplexy. As well as what next steps are to keep Tate’s immune system in check. Tate will have some rheum labs run again in the morning.
Tate isn’t feeling great but high blood pressures are starting to come down and her temps were closer to her baseline today. Acute stuff seems under control. Chronic remains a mystery and ongoing challenge. But….we are hoping to go home tomorrow!
Tate is still on IV steroids and IV dilaudid which will have to suddenly move to oral when we discharge. So it could be a tough transition if she still isn’t absorbing well through her gut. Most of her meds are being crushed and put through her J tube and the uncrushable meds swallowed with applesauce. She has boxes of iv fluid, iv meds and formula waiting for her at home. We move the hospital home once again.
But beyond the medical, at home, she has a family that loves her and still has 3 pups ready to snuggle. Her corner of the couch knows the outline of her body and we both look forward to monitor/pump free nights in our own beds. We are both beyond grateful for the love and care shown here in the hospital with so many of our very favorite people. We’re grateful for the ones that feel like family, the ones we’re just meeting and for the help walking through the hard moments and conversations. We are also grateful for a home full of family and to all walk through the hard stuff there together too. We are blessed even in the hard. There’s tinsel flying everywhere.
Thanks for praying us through another round of acute, scary stuff on top of the never ending chronic. We believe in prayer and we are grateful for yours.