Rough Shape

Oliver woke up with a fever of 102* and extremely rapid breathing. We knew instantly that something was seriously wrong. Within the hour our hospice nurse and day nurse were at the house. His gtube site was leaking black/yellow indicating bile and a possible obstructed bowel. It was very difficult for them to assess his lungs because his breathing was so gurgly in his upper airway. His respirations/minute were very high, his chest was retracting and he was clearly in distress.

The nurses were fairly certain they could hear lung crackles despite his gurgly breathing and called his Dr to see if we should get a script for an antibiotic like we usually do for lung crackles. The Dr was alarmed at his respiration rate, chest retractions, and the fact that Tylenol and Motrin hadn't made his fever come down. She suggested that we go to the ER. We talked about it, we really want to keep him home. Most of the interventions that could be done at the hospital and not at home, are interventions we aren't willing to do. A terminally ill three year old doesn't belong on life support in a cold hospital room, he belongs at home in his Mommy and Daddy's arms.

So we said no, and asked what we could do at home. We've been alternating tylenol/motrin and his fever is down to 99. With a suppository we were able to get him to move his bowels, and so we got 3oz of pediasure into his belly to keep him hydrated. But all day long those measly 3oz have been coming up his esophagus and out his nose and mouth. He's silently aspirating right before our eyes. No coughing, no vomiting, just formula silently coming up and out, and also going back down into his belly or lungs, likely both. There is nothing we can do to stop it. Right now he's in very rough shape. His morphine dosage was recently increased, and it took 3 of those increased doses this morning to bring his respirations down to where he was comfortable. We've stopped his feedings and he's had 4 breathing treatments, lots of medicine and has slept in our arms all day. He appears more comfortable, which is good, but his breathing is weak, his chest is rattly and we just hope he can fight through this.