The Maybury family in Olivia's new room at Boston Children's Hospital
Boston Children’s Hospital
Olivia was moved to Boston Children’s Hospital on 2/20 at 9pm. The transport was very difficult for her. She required significant additional support both during and once she arrived at Children’s. She has her own room with a fold out bed for Max or Becky to sleep in if they would like, and a bathroom with a shower for them to use.
Overnight the first night, Olivia’s nitric oxide was increased back up to 20ppm, and her oxygen requirement went up to 100%. Her feeds were paused while the team tried to figure things out. She was given a muscle relaxant, a sedative, and her morphine was increased.
Overnight on 2/21, the team was able to wean her down to 40% supplemental oxygen. She is currently on a paralytic that is keeping her still while the machines do the work.
Her feeds were restarted at a miniscule amount, so she is getting most of her nutrition via her PICC line. The feeding tube was replaced with another kind that extends past her stomach into the top of her intestines so that the breastmilk essentially bypasses the stomach.
Olivia’s BCH Room
PDA
Olivia had an echo that was reviewed by the Pulmonary Hypertension team, Cardiology team, and her neonatologist and NPP. The consensus is that she no longer has pulmonary hypertension, and she needs her large PDA closed. However, Olivia tested positive once again for an infection, which will require 5-7 days of antibiotics once the exact strain of pseudomonas is determined. The PDA team has said she needs to be cleared before they will perform the PDA procedure, so we are set back another week.
The team plans to wean her off the nitric, then do another echo to make sure it did not affect her pulmonary hypertension. If that is ok, they will wean her off the paralytic.
