Home for the Holidays

This post is long overdue! After 5 very long and scary weeks inpatient at Lurie Children's, we made it home just in time for Thanksgiving! But it wasn’t without more challenges to get there.

Since our last update, on Nov 2nd, after almost 3 weeks inpatient, we were in the process of being discharged (getting new prescriptions filled, getting restart orders for equipment, supplies, nursing, home therapies, etc.) but as
the morning progressed, something just felt really off. The night before, Sloan's gtube was leaking extensively and the stoma was looking extremely irritated. After first checking the functionality of the current gtube button and then searching high and low throughout the hospital, we finally found a new gtube button and prayed that the change would solve the problem. But in the morning, Sloan wasn’t responding to her storming and seizure meds and we realized her IV blew and still wasn't getting all her meds via the gtube due to continued leaking. We couldn’t rescue her quick enough and she spiraled - HR over 210bpm for way too long (baseline is usually like 130s bpm) and she went back into status epilepticus. We made the snap decision to put her brain back into suppression. New central lines and arterial lines were put back in, the dang video EEG went back on, and we got the warming blankets and blood pressure meds ready to go again. We started treating aggressively and in the midst of testing, we discovered a brain bleed after an MRI, her hemoglobin was dangerously low and the doctors were pushing for a transfusion and all more complicated given the blood clot. I can't even remember all the details, complications and dozens of conversations with the ICU team, the neuro critical care team, the neuro surgery team, hematology, palliative care, her usual providers (neurologist, epileptologist, pulmonologist, geneticist), and on and on. There were a few days in there where we thought Sloan wasn’t going to pull through, but with a lot of tears and prayers and a lot of “advocating” for our baby, she finally came back out of her coma and all her numbers stabilized. We eventually convinced everyone that the hospital setting was too disruptive for her sensitive triggers and we needed to be able to manage this new normal at home, whatever that new normal was going to shake out to be. With a number of adjusted medications, we made it home just in time for the holiday season!

We are nowhere out of the woods though just because we're home. The past 8 weeks since discharge have been agonizing watching Sloan continue to suffer through neuro storming episodes and constant seizures. Even the seizure clusters are back. For the thousands of seizures I have had to watch her endure, my desensitized heart continues to breaks a little more with each one that she battles. We constantly worry that she is back in status, but without another EEG, we just don't know. If she does go back into status, we discuss often with her providers if it would change the course of management... maybe but maybe not. We just want to keep her comfortable and we can barely do that. The amount of pain meds she’s on feels like enough to tranquilize a whale and yet it just brings her to a calm state and even then, only temporarily for an hour or two. She is only comfortable when she’s sleeping and she only sleeps when heavily medicated. It’s a miserable sleepless cycle for all of us.

But even amidst all of this anguish, there's nothing like being home for the holidays. I do not take for granted the joy of being able to decorate and enjoy the warm glow of lights, cook and eat on real plates with silverware, overbuy and wrap gifts in the comfort of my own home in an attempt to make it the most special Christmas, especially in case it’s our last with our sweet Sloan.

I think about all the holidays we've spent inpatient and how tough they were and how tough it must be for the families who didn't get to celebrate at home this year. For those of us that grieve through the holidays, I hope you were able to find some light and comfort with family and friends - my heart is with you too. I wish I could say I had my act together enough to send out Christmas cards, but alas, there just aren't enough hours in the day when you're just stuck in survival mode. From the bottom of our hearts, we thank you all for your support, prayers and generosity over the past year. We wouldn't have made it through this much without you all.

From our family to yours, wishing you all health and happiness in the New Year!

Love,
The Calderons