Two Steps Forward . . . One Step Back . . .

The last time I posted Gavin had come off the ventilator. . . since then he has had to go back on. Thursday afternoon I went to visit Gavin around 4:00. When I got there I went to the sink to scrub in and within a few moments I heard yelling from the room where Gavin was staying. I saw nurses, doctors and respiratory therapists running to his bedside. A nurse closed the blinds to the window where I was looking in and I panicked. This was the first time in my life I actually felt like I was going to pass out. I could hear that there was a lot going on in his room and I waited for a nurse to come talk to me. I had never seen the staff move that quickly - I knew it was bad. After a few minutes a doctor came to tell me that it appeared as if Gavin had a seizure. We knew this was a potential problem, but the EEG test had come back negative for seizures three times. I have a "mother's instinct" . . . I have felt for the past few weeks that Gavin's "blue episodes" were due to seizures. There is a certain appearance Gavin gets right before he stops breathing and turns blue. He gets a blank stare, goes very ridged, turns red and then immediately turns blue. I have seen this over a dozen times, yet the doctors have not listened. This is one of the reasons were are taking him to a larger regional children's facility. He needs more neurological testing than they can do here. It was a very scary experience to witness. Because of this seizure, Gavin has had to go back on the ventilator. He does not need it to breathe for him all of the time, however, it will breathe for him if he goes into an apnea spell. They have also started him on caffeine to help him if he IS forgetting to breathe. . . my mother's instinct really tells me he is seizing quite often and that this may be some of the reason why he is having a difficult time keeping his breathing steady. We are working on getting him to another hospital, and the insurance has approved UCLA. We haven't decided exactly what to do, but I know that we will be led to the right place for Gavin. Since his episode on Thursday, he has had much better days. We keep our fingers crossed that we will find some answers. I just wanted to share a few more pictures of our little Gavin. He is a beautiful boy and every time I stand by his crib, I get the feeling that it will be better than we think it will be. This is such a journey . . . I think I could write a book about it! :)