It was a mostly quiet day today. A chest x-ray this morning revealed that both of Emerson’s lungs are collapsing; they increased pressure support on her BiPAP machine to help open them up. With the increased support, Eme’s respiratory status was stable today.
She is still confused, but was much less agitated today. She was only awake a very short period of time though. Despite aggressive weans on her meds from intubation, she slept almost the entire day.
We just had our single largest hour of urine output since admission. There is no plateau even in sight for this DI crisis and everyone here is at a loss for what to do next. Several kidney doctors have consulted, endocrine, the PICU team – all are stumped and say they’ve never seen anything like this before (if only I had a dollar for every time I’ve heard that!). We tried a new drug today, but it didn’t seem to have much, if any, impact.
Eme’s heart rate is dipping into the 30s tonight, even while awake. It keeps drifting lower and lower and the team keeps adjusting the number at which they’re concerned lower and lower. They say as long as she’s perfusing and her extremities are warm (which they have been), they don’t want to intervene; just watch. We’re getting into numbers now, though, that I’m a little uncomfortable with. It seems to me that much lower than this and the crash cart needs to park itself outside her door… just in case.
All in all it was an okay day – some things a little better and the rest pretty much status quo. I went to the gift shop and bought a few picture books, curled up next to her in bed, and read to her while she drifted off to sleep. A lazy Sunday, the best kind 🙂
Praying for a breakthrough for your sweet girl…. 🌠
When I read your post, I am happy to hear about the bits of good news, but saddened by the not-so-good news. You must be overwhelmed. I bet it felt good to read to her as she was drifting off to sleep; Emerson is so comforted to have you do that, I am sure. As you said, Emerson is known for surprising the doctors. My prayers she continues to surprise them in only good ways…….thinking of you….
God bless you Erika and Emerson!! 💛