Last night I took Dear Son to the emergency room. His breathing had been quite labored since we had been home and I worried he might die on me. That was frightening to say the least. Last night, around 5:30 p.m. or so, he began yelling out in pain and was having a hard time breathing. I paged Ped Neuro Doc however Dear Son kept yelling out and was breathing so hard that I ended up taking him to the ER. He had been running a small fever all day, around 101 or so, and I had been doing all of his chest pt and nebulizer treatments every four hours with an extra nebulizer treatment during the night. Despite that, he had been struggling to breathe most of the time, especially when he was lying down, so I had kept him in the recliner for most of the day. I was afraid to lie him down in his bed.
It was a lot of work to get him dressed, into the wheelchair, into the car and then in to the emergency room. When we got there, his oxygen saturation was around 86-87 and finally settled around 91 within the five hours we were there. His temperature was normal although I had been giving Motrin and later Tylenol to keep it down. I had been doing this regularly since we left the hospital. Overall, I think moving him around must have helped his lungs a lot (plus the fact that he was sitting in his wheelchair, which had strong side supports and can hold him straighter) because his breathing seemed much better in the emergency room. I think it also helped me just to have him evaluated. I had been working so hard to make sure I was doing everything possible to help him get better and because he had been working so hard to breathe over the last two days, I felt death was imminent. I was a bit afraid of him dying on me and what would happen, etc. so the visit helped give me some peace of mind. I know we are getting to the end of the road with him since his lungs are so weak. I think I finally understand what the ICU docs meant last May when they were concerned about whether or not they could get him off of the vent. I see now how hard it is for Dear Son to breathe and better understand that getting off the vent isn't that easy. I also hadn't felt comfortable enough with him over the last two days to even take a shower without having someone around to watch him. I have to remind myself that he was on the non-rebreather at 12 liters of oxygen less than a week ago and that he has only been off of the oxygen and breathing on his own since Wednesday.
He slept good last night and opened his eyes for a little bit this morning so I felt better. He'll probably be out of it the rest of the day. While I certainly felt he was highly unstable for the past two days, I feel this morning that he's a little better and would rate his status as guarded.