21 Days Old: Morning Update

Good morning and happy Saturday!


Olivia had a comfortable, if not blithe, Friday night. The Guerrero grandparents arrived from Hopewell to find her awake. They entertained her restlessness with stories and toys before she finally fell asleep. We’ve found Olivia progressively more alert and awake since the decision to cut her Phenobarbital level.

Speaking of Phenobarbital, her morning labs indicated a drop in direct bilirubin to 11.5. Her last reading of 12.0 was on Thursday. The decrease is considered progress. They measure her direct bilirubin levels every Tuesday, Thursday, and Saturday; so hang tight for the next update. Today they will stop Phenobarbital. The drug has a long half-life – 53 to 118 hours (mean: 79 hours) – so it will take a few days to come out of her system. On Tuesday, they will check her levels and compare it with direct bilirubin rates. In addition to determining the impact of Phenobarbital on her direct bilirubin, this stoppage should help any neuromuscular assessments from Dr. C & team next week (by reducing sedation).

Ms. Olivia gave back 10 MLs of feeds this morning. Our nurse relayed similar feeding patterns from the overnight team. We have yet to see the effect of Reglan on her motility. They will continue to administer the drug and reassess Tuesday if no is progress made.

Yesterday evening the pulmonary team stopped by and recommended a goal of ultimately stopping Dornase (started day-8). Overnight, they reduced her rate to once a day. No changes to Albuterol and her saline nebulizer. They are dropping her respiratory rate to 35 today, as they continue to wean vent settings.

Today, Mom and Dad are hoping to hold Olivia, swaddle-style. Her respiratory conditions have been improving and moving her isn’t causing the desat events we saw on days 14, 16, & 17. Aunt Lauren and Uncle Chis are here to see her today. They will stay for the evening while her Grandparents head back home.

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