19 Days Old: Evening Update

Busy day in room 15.

After morning rounds, Olivia had a visit from mom’s girlfriend Heather. She brought along some special treats, include a snazzy pair of sandals for Olivia to wear one day. Heather helped Olivia gaze at a new book, and kept her engaged in some overdue girl talk.



Around 1:30PM our nurse packed up Olivia’s things and took her downstairs for the HIDA scan. She did great during transport, had no respiratory issues, and came back to her room a couple of hours later. She’ll need to go back downstairs for part 2 of this test tomorrow, and then results will be at least a few days out.

While Olivia was downstairs, the palliative care team stopped by to talk to mom. This team (consisting of an MD and NP) will be a part of Olivia’s primary team moving forward, and this was just an introductory talk.

After the HIDA scan, we had the long awaited visit from Dr. C who recently returned from a trip to China. The assessment was thorough. Olivia cooperated and woke up for the latter part of the assessment, so Dr. C and her team were able to see Olivia awake and alert. Dr. C recommended a genetics test as the next step, which we think may be ordered fairly quickly (in the next day or two). Unfortunately, this is another test that takes a few weeks to run and analyze, so we are not expecting quick results.


Respiratory wise Olivia did great all day on the same settings described this morning. Her feeds continued after the HIDA scan at 1 ML per hour. And we had a poop at noon (with a little help from a suppository).

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