We had some unexpected challenges over the past 48 hours. Jace had been doing well and recovering from his 1st PICU stay, with weaning multiple Meds and PT/OT. Wednesday he started breathing rapidly in the afternoon, and by yesterday afternoon he was working hard to breathe and he was grunting with each exhale. Last night he fell into respiratory distress and required more oxygen than he had previously needed over the past two weeks. As his O2 needs increased, the stem cell team reached out to the PICU team for a rapid response to come visit Jace and check him out. In a matter of about two hours things escalated significantly. The plan was to gradually transfer him to the PICU to transition from a nasal cannula to a high flow cannula, so the PICU team came to the stem cell unit to do that bedside. By the time the high flow cannula was on at 10L, his O2 sats continued to drop and they had to switch to a CPAP mask. That too was not enough to keep his airway open to properly oxygenate his body and his sats continued to drop.

At that time Andrew and Becca were both assisting in the room, but when Jaces sats plummeted, his pink face quickly turned blue and a Code Blue was called. The decision at that time was the location he would be intubated, as he needed 100% respiratory support. They decided to transfer him up to the PICU while providing bag oxygen the whole way, and they were able to utilize tools for ETtube placement in the PICU. When placing the ET tube, they discovered a large amount of blood in his lungs (a pulmonary hemmorage), which was causing him to drop his sats. They are still not sure what the cause of bleeding is, but they have been working closely with many blood products and ventilator settings to try to control it.

As of this afternoon, Jace has been transferred from a traditional ventilator to an oscillator which takes shorter, shallower breaths to protect the integrity of his lungs. This will help to bring down his dangerously high CO2 levels, by allowing his body to ‘breathe’ more CO2 out. He is in good hands with the PICU doctors and nurses, and we are crossing our fingers that this is a shorter lived issue with limited effects on his other organ systems which are still recovering.

Sending hugs,

Andrew, Becca and sweet baby Jace