It was a relatively quiet night, so very very thankful for that. I went to bed just before midnight and slept until around 5:30am when I heard Lucy complaining of pain. This is so hard...we are in difficult spot when it comes to pain control, too much and we are in jeopardy of suppressing her respiratory drive even further, too little and then she is in pain.
Last week when Lucy was having a difficult time keeping her O2 sats up it was because of the accumulation of all of the narcotics in her body, narcotics suppress the body's respiratory drive. When we woke her up her O2 sats rebounded which was what we expected would happen. This time when waking Lucy up her O2 sats did not rebound, in fact they continued to plummet. This is not what we expected. A stat chest x-ray was order bedside to rule out a pneumonia. Dr. R reviewed the film personally with the radiologist and they both agreed that things looked normal for Lucy.
While the respiratory therapist was setting up the Vapotherm she was asking questions about Lucy's respiratory health, both Dr. R and I said that ironically respiratory function is Lucy's strength. She is a shallow breather, uses O2 regularly, and has had her fair share of pneumonias, but overall she breaths on her own with little need for assistance, until now.
Our girl is sick and we don't know yet what is making her so sick. However, there is a suspicion that she could be experiencing urosepsis. Her body has been fighting hard all of her life, but in particular these past few weeks. She is still febrile, IV Tylenol is not doing much to bring down her temps, but the combination of Tylenol and dilaudid seem to be helping her pain as her heart rates have come down a bit.
There is a steady stream of doctors and nurses coming in this morning, each relieved that she stayed stable overnight, but all with the same look of concern. Our girl is a fighter, such a fighter...