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.

19daysold-momshand

19daysold-readingabook

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.

19daysold-awake

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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