Post BMT +144
+144
Day 3
Last night WAS a bit calmer. I had a hunch that the around the clock Benadryl she was receiving for nausea while inpatient was making a difference with the involuntary movements. At home, I try to limit how much we add prn meds as she’s already on so many.
Around 5 this morning, the movements and sounds started to increase again. Her last dose had been at 1 am. We held off most of the day and it was extremely difficult to watch Tate try to rest through the constant and increasing movements. My hypothesis was confirmed when we gave her another dose at 5 and she was able to not only rest more but ate a mini ice pop. First food in weeks!
The tremors/movements never completely stop but we are grateful for something that is giving her body and mind a little break. Tate is also displaying sleep disorder behaviors that cause her to constantly be moving in relation to whatever she is dreaming about. She rapidly wakes from large jerks and then falls asleep immediately to repeat the cycle. All this while her muscles are constantly fluttering in contractions. Absolutely exhausting and heartwrenching to watch; I can only imagine how terrifying and all consuming it is for Tate.
The current thought process via neurology is that they do feel there likely is a genetic component to what Tate is displaying. We’ve been told that the lumbar puncture isn’t diagnostic but could help lean one way or eliminate others. Tate needs to see a movement specialist. Surprisingly, Childrens doesn’t have a pediatric one as these types of disorders typically hit age 50+ There is one across the street at the adult hospital who we can see once she’s discharged. In addition, there is a “really good” pediatric one in Chicago that also specializes in research.
We honestly cannot believe we sit in this position once again. Today was tough emotionally. We are crushed with even the thought of once again facing something that is so life altering. We need all the prayers. For our hearts, stamina, faith, resolve and for the medical teams both present and future.
In the meantime, we are fighting to keep our head and hearts in the exact moment we are experiencing. To take our minds even to tomorrow makes it hard to breathe. It means the hard moments are really hard when the future feels so bleak. But the little moments that we used to pay zero notice to, like Tate keeping down a mini ice pop are worth celebrating. LIve in the simplest of moments.