Laura has been an absolute lifeline for our family over the last, devastating 3.5 weeks. Our son, L is a former 24 week preemie and Lurie NICU graduate who despite all odds, grew up to be a very typical 3 year old – running, playing, talking up a storm and being discharged from all EI therapies earlier last year. Right before Christmas, L unexpectedly had a seizure at home and our entire world shattered. Over the dizzying weeks, an early diagnosis of febrile seizures turned into a positive COVID swab with suspected encephalitis then a diagnosis of Acute Necrotizing Encephalopathy. Our usually outgoing, playful little boy is unresponsive to the world around him.

Laura had been an IMCU nurse for L and we’d kept in touch with her and a few of his other Lurie nurses. The week of Christmas, Laura was surprised to see L back in the hospital and offered to pick him up. She’s been working with him every shift she’s had in the PICU since. We’ve so appreciated having her continuing to be L’s nurse during this time and it’s made a huge difference in his care.

When L initially wasn’t waking up from sedation and we were pretty upset and probably not making a lot of sense, Laura helped us answer questions from his medical team about his baseline and explain how different he looks now. This understanding was key to the medical team realizing something was seriously wrong and getting him down for a repeat MRI sooner, and getting him on a brain protection regimen. When L’s whole medical plan changed (went from just omeprazole and a Flintstones vitamin pre-admission to about a dozen IV and gtube meds that change almost daily), Laura always took care to let us know what she was giving when. Completely in shock, we weren’t good listeners and I’m sure we asked her to repeat things often. Although we heard it too in rounds, it can be a blur.

Her patience and professional care have helped us follow his course better and prepare us better to take care of him long-term as his parents. With L’s new normal, Laura helped us figure out new ways of caring for him. For instance, since L went from eating everything by mouth (and whatever we ate as a family) to now gtube feeds, we found out together that L needed to be manually vented to a 60ml syringe after pump feeds and before meds. Otherwise, he would get intense dystonia, his heart rate would spike and he would cry out. With all of our worry and fear, Laura helped us find some comfort. First, she asked if we wanted to hold him. L was hooked up to multiple IVs, we were a bit intimidated and didn’t realize we were allowed to. But she moved all of his cords and lines around and got him in our arms. L loved it and slept gently for hours, looking as comfortable as we’d seen him. It helped us as parents too.

In addition to the consistency Laura has provided by working with L regularly, she’s been so thorough in report to his other nurses. So they all know his new little quirks from venting to how to help soothe him in a dystonia episode. It’s helped L during this uncertain time, and helps put our minds at ease too. Knowing L is in good hands with nurses who know his care well, we’ve been able to start getting away from the hospital each night to eat dinner with our 5 year old daughter. She’s struggling with missing her brother and her parents too. My husband and I have been trading off time at L’s bedside, trying to spend each day and night with L to comfort him through his dystonia episodes, learn his new therapies and hear the latest updates from his doctors.

One day this week, L had a rough day with really bad dystonia and wasn’t settling. We were worried to leave him to have dinner with our daughter but didn’t want to disappoint her either. Laura sat in his room and kept a close eye on him. We called the PICU an hour later and were worried when Laura gave us an update over the phone that he looked about the same. Then, after she was able to settle him during shift change, she called us back and let us know. She didn’t have to do that, especially since she was ready to head home from work but it made us feel so much better. When I got back to his bedside at 8:15 pm that night, L looked so comfortable. Laura had even tucked him comfortably in bed with his favorite Elmo and songs.

I’m not sure how we would have survived the last 3.5 weeks without Laura’s steadfast nursing. She’s been L’s rock and ours too. We don’t know what the future holds for L. The doctors have made it pretty clear it’s impossible to “prognosticate” given that COVID is so new, this complication so rare, and that L’s case seems so different from others. She’s helped us through what has felt like an unthinkable tragedy and uncertainty. So we are in the right headspace to put our efforts into his therapies to help with rehab. So we know that a lot has changed but we still have ways to comfort and connect with L. Laura’s care of L has been a real difference maker for him and for our family.