Nighttime Troubles

James' Swallow Video Study has been booked for Thursday afternoon. The Meeting of the Minds will come after this test and will not be until next week some time. There has been some difficulty getting all doctors together and so it was felt waiting a bit longer would produce better results then not having half the people there. We are in agreement with this and hopefully this way both our Genetics Doctor and Pediatrician will make it to the meeting ... the two doctors who understand James the best.

Yesterday we were given the option to go home or wait until after the Swallow Video. Since James has been having some troubles at nights I opted to make a decision today after we seen how he would do last night. Unfortunately his night time struggles seem to be getting worse. Last night he had repeated drops into the high 80's for his SATs and even after being woken or moving was not able to hold them over 92%. We could also hear in the breathing that he was having trouble as he began to do more forced exhaling ... usually one of our first signs that trouble lies ahead when we're at home. He did make it through the night without putting the nose prongs back on, but we debated several times whether we should. It's almost like he knew he needed them because at one point he woke to see us watching him and the first words out of his mouth were "no nose". Usually when he wakes his SATs right away come back up into a good range, but this morning they also struggled for the first little while. The Respitory Therapist said that next time it would probably be wiser just to put the prongs back on if he's continually up and down and struggling. The question becomes whether he is heading back downhill or just struggling to get up the hill.

During the day James is active and busy ... in the playroom, outside (weather permitting), up and down the halls on the cars, wagon rides ... makes for a long day of wandering behind him. His SATs will drop if he's active or crying, but come up once relaxed. To look at him you would never know why he's in hospital ... we are surprised (and thankful) that we haven't been kicked out of our nice private Step-Down ICU room.