Our table at the NSDC Conference sat empty today. So just what did happen? It really all started the minute we arrived in the exhibit hall. It was beyond freezing with a direct blowing draft onto our table. We came prepared with long pants and multiple layers of clothing but it just was not enough for Sarah. The second day it seemed even colder, so I went up and got her a fourth jacket. She kept her scarf on all the time too. Then she was hungry and wanted lunch. So we went downstairs to the restaurant. It had up to an hour wait, but they told us just around the corner was a Fridays. Sarahs face lit up. She loves it there. Out we went through the swing doors. It was HOT outside. But the minute we rolled in, we met a few blogging friends we have been so anxious to meet in person. It was a super lunch. Sarah was so happy. During lunch however, I did notice a couple of times she was tugging on her check/neck. I asked her if she was ok and she said she was. After lunch we headed over to our hotel to drop off our leftovers. While turning the corner, we walked right into a cloud of cigarette smoke. I should have known then we would be in trouble. I gave her a breathing treatment before we headed back to the exhibit hall. She seemed fine and immediately got back to sewing. So I headed over to chat with a mom and son at another table. A few minutes later, the woman who was at the table right next to us came running over and said Sarah looked like she was in trouble and seemed blue. I quickly ran over and instantly recognized the scenario. It happens so fast. Blue lips, gray eyeballs, slight foaming at the mouth, purple finger tips, high fever in the torso and difficulty breathing. THIS IS WHEN YOU CALL 911. And we used to. But having been through this at least a hundred times before, we have a doctors prescribed plan that we now follow first. I immediately put her in her transport chair and rushed her to the room. Three rounds of albuterol, a suppository and chest clapping to break up the mucus. All the while my adrenaline is pumping as I continue to mentally assess whether a 911 call is required. In this scenario, not only are we in another city, we are in another state. I think about the mountain of paperwork that will result if we present with Ohio Medicaid card in Indiana. I pray we can avoid that nightmare. Not to mention that emergency protocol will want to intubate and we know that could result in her needing to be retrached. I also think of our facebook friend Leah Baker, who did say her final goodbyes to her precious queen less than twenty four hours earlier. I start to bargain with God. Please, youve already taken Ashton this weekend, not Sarah too. I track down Matthew and Jessica. They went for walk and are at least 10 minutes away but agree to come as fast as they can. I give Sarah another treatment. Nothing is happening. She starts to cry, only no sound is coming out. I start to breath into her mouth and nose to keep oxygen flowing. She is burning up with fever. Then she starts to choke. Her gag reflex engages and up comes a mucus plug. Her color starts to return. She lays back down, exhausted with the look of fright on her face. Again I ask myself whether we should call 911. My legs feel like wet noodles. Just then her brother walks into the room and says Sarah sit up. You need to get that mucus out. She complies and within seconds the results are in my hand. Instantly she looks better. But now she is weepy and wants to talk to her big brother. So I get out her ipad and she facetimes with TJ. While she is speaking with him, I head back down to the exhibit hall. I mull over in my mind what happens next. I know if I bring her back down here, she will potentially repeat the scenario and we will end up in the ER, likely with pneumonia if it hasnt already settled into her already damaged lungs. I decide it is not worth the risk. So at 7:50 p.m. I start to pack up our display. Jessica stays with Sarah in the room, while Matt comes to help me transport two cars worth of stuff through the corridors of the multiple hotels we must pass. I will never forget what my seventeen year old said as we were doing so, Mom, I am happy we had two good days. With Sarah we need to celebrate what we have and not worry about what we dont. My advice to other siblings is to remain flexible. Thats Down syndrome sibling 101. Such wise words from my son which make me so proud. Just after 10:00 p.m. Sarah and I were on the road heading back to Ohio. I must admit, I felt a sense of relief once we hit the state border. I also acknowledge that maybe we best stay put in Cleveland. I just dont know how many more of these scares I can live through being far from home. Thank you to everyone who helped with this ordeal. I know I will never be able to remember all of you so I wont mention names. Just know your faces will never be forgotten. Thank you. Tonight, Sarah is lethargic, but doing OK.
Posted on: Sun, 13 Jul 2014 01:42:58 +0000