We have been super busy, this last week and a half. My family came in from California and we had an enjoyable time with them. We didn't really get the chance to do much besides go to the hospital, but it was still really nice to have them out here. They left Tuesday morning and we did the 24-hour room-in at the hospital Tuesday to Wednesday.
The room-in went well, except it was very busy and we only ended up getting an hour and a half of sleep total. We were expecting a nice calm 24 hours, but from the time we entered room we had visitors. We had several specialists drop by, some evaluations done (such as they redid his hearing screen; results are the same: moderate hearing loss in right ear, severe in left ear), family dropped by, people from home health came by to bring some equipment for us that we would need at home. --Side note: I think it would be easier to have all the equipment brought by at the same time but each piece of equipment was brought by different people at different times--all from the same company!
During the night we didn't get sleep because Kai's heart rate kept jumping above 200 which would set off the alarm on the monitor. We would get up and attend to him, but most of the time he was sleeping. Additionally, we had to do his "cares" (change him, take temperature, put on/off splints, feed him, etc) every three hours, so when the monitors weren't beeping we had to get up for other reasons. They have Kai on a dose of caffeine for his respiration, which increases his heart rate. We also think he may have been a little too warm as well.
Overall though, the room-in went really well and we were able to bring him home Wednesday!
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