I almost lost him...

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On Tuesday night my 15-month-old son Dustin had a seizure... some of you might know he had a few before and we had some tests done, but they thought they were just febrile seizures he would grow out of and nothing to worry about. Well, on Tuesday night he had a tiny one that last just a few seconds, and then we noticed he had a fever so we gave him Tylenol and put him in a cool bath to cool him down... all the things we were supposed to do. Only then he started having another seizure, so we started timing it, called 911 when the doctor had told us too, all that stuff. He was still having it when the ambulance got here, still having it while they worked on him in the ambulance, still having it at the emergency room while they worked on him there. The doctor had to pump so much medication into him to stop the seizure that he stopped breathing. I have never been so terrified in my life, and that's saying something, considering the life I've led. For almost two hours a respiratory therapist stood there pumping air into my son's lungs, while he wasn't breathing on his own at all. I felt like I wasn't breathing either. They kept letting us in the emergency room and then taking us back out. The first time the nurse made me leave she said "We don't want you to have nightmares"... which might have made some people feel cared about and better, but it only made me think "What are they doing to my child that would give me nightmares?" and got my imagination going. (That was when they were putting tubes in him for breathing, I found out later.) That was a horrible time for the doctors because they couldn't seem to get the right size tube, and his lungs and airways were already all swollen and it took forever to intubate him. Anyway, he started breathing on his own after a few hours, though they left the tube in just in case they had to breathe for him again later. They wanted to send him to Milwaukee to the children's hospital there, but because of weather there was no getting a plane or chopper to do so. The staff at the hospital here wasn't really comfortable having a baby in that condition at all, usually they send them out. When we finally left the emergency room for the intensive care unit, it was like 5 hours later. In the ICU, Dusty had his own nurse who sat with us all night. That was really good, because every time his numbers dropped she was right there to help him and call the respiratory team and everything. Wednesday morning his pediatrician told us if he didn't wake up soon she still wanted to send him to Milwaukee, and my husband and I were both just staring at him and each praying to our own God(s), and trying to think of some way to get him to wake up. Tickling finally did it, and he even opened his eyes and giggled at us for a moment. After that he was back out for a long time (because of the seizure meds) and then when they finally took the tubes out of him his throat was so sore and raw and he woke up really upset and keep doing this poor pathetic little scream. Poor baby, I felt so horrible for him. He was stabilized Wednesday afternoon and we wound up taking him home just because he would be more comfortable there, and he's been eating enough and acting more like himself now, though the seizure medication they have him on is knocking him out. We go to see his pediatrician again tomorrow, and then after that we have to figure out where he's going to see a pediatric neurologist (somewhere in Wisconsin likely, but we're not sure which place yet). Obviously there's something more than just febrile seizures going on with the severity of this one, say the doctors. I don't really know how to make this a discussion, but I wanted to share because I know my friends would want to hear, and because I felt like writing it all out would help me some. I was so calm while it was going on, outwardly, even though I was freaking out inside. I was talking to the UU minister on the phone today and she kept telling me how well I did and I realized she was right... my husband and I both managed to keep it together better than I would have expected. If someone else had told me this story about their child, I would have said "I would have been going nuts" but honestly I was just trying to be there for Dustin and do anything I could and be strong for him. Has anyone else been through an emergency with their child and reacted differently than they thought they would?