One Year mark

Today marks so many things for us. One year ago we were in CMH in a hospital room, with Kaesyn hooked up to oxygen, IVs and so many other monitors. One year ago they took Kaesyn right out of my arms to perform a broncoscopy. I remember knowing this is what needed to be done, and the Doctors convinced me it really was not the big of a deal, hed be out of my site 30 minutes TOPS. I remember the anesthesiologt coming in, and give Kaesyn meds to make him a little out of it, so he would not be upset when I left. They walked me to "reunion corner" and gave me instructions to the waiting room. Kaesyn still cried, I walked away from my baby with tears filling my eyes but kept telling myself, in 30 minutes, we will be together, and have answers. I knew in 30 minutes, my life would change forever. Thirty Minutes from then, I would have answers to why the last 16 months my son would stop breathing, why he wouldnt eat, why his face and eyes were sunken in. I go down the elevator, with my brain racing with all the possiblities, while my heart wasnt sure what to feel. The elevator opens and I see this big room, with decorations, and a big huge tree with a face on it. WOW! It was a really cool room. A really cool room, full of parents like me waiting for thier children to come out of the Operating room. However, I felt different than them. Sitting there counting seconds til I got to see Kaesyn again, I finally figured it out. I was sitting there, all alone, in a corner. Pressing a button on my phone to check the time, trying to clear my head, trying to stay calm, but in all reality I wanted to break down, I wanted to fall to my knees and cry and have someone tell me it would be okay. 15 minutes had passed, I took a few breaths, said a prayer and asked God to please look after him, and please have our Doctor delliver good news. I remember calling my Grandma, she was in california with my Uncle Nick at the time that was passing away of ALS. She didnt answer, understandable, I call my mom, no answer, I call both of them over and over again. None.Nothing. I lost track of time and before I knew it 30 minutes had gone by, nothing. no word. none. I start getting shaky and I get up to pace the room. I go to the receptionist to make sure the OR hasnt called to give me a report. They heard nothing yet. I pace another 45 minutes, jumping everytime I heard the phone ring, and everytime they called another parent to update them. More time passed by, and I realize there is a whole new group of parents, everyone who was in there when I was there was gone, reunited with their children, here it has been 45 minutes PASSED the 30 it was supposed to be. Im getting very impatient obviously, I again check at the desk demanding answers, letting them know this procedure wasnt supposed to take more than 30 minutes. The apologize and insist there is nothing they can do, me taking a deep breath understand that and realize I need to calm down. I try to call someone again, nothing, no answers still. Finally at the 90 minute mark I see Dr. E coming down from the elevator, wow. I got no update, from the receptionist to update me, nothing. He walks into the waiting room, which is not how everyone else did this. He sat down next to me with papers, took a breath, and said lets go into the conference room. REALLY? The 20 steps to the conference room I dont even remember. I was so shooken up, 90 minutes for a 30 minute procedure, and he wasnt even following routine like all the other drs/families were. He even had 2 other nurses with him. He explains that Kaesyn had a very hard time, and he had severe floppy airways. Explained what this means, and a treatment plan. He gave me a hug, I thanked him and went up the elevator to reunion hall. I stood there looking around waiting for my son. They finally wheel him out of the recovery room, in a mini crib, he was propped up, hooked up to more IVs and the oxygen again, pretty sure he wasnt dependant on o2 when I was there. He had no worries in the world. I on the other hand broke down kissing him and hugging him. He looked so happy with a huge smile on his face, but his skin was even more grey, his eyes were more sunken in. And nasal canulas dont neccesarily look good on a baby. They were trying to get him a room in the PICU, but they decided he was doing well enough to stay in the room we were in, and so we didnt have to move all over again. We get to his room and hes still a little out of it from being asleep, they get all his monitors, IVs, o2 tubing organized and handed him to me. Thats whn this hit, looking in his eyes I knew things would be just fine, thats when I realized for sure that I can not doubt God, this was his plan, this is what he planned for US. Not caring about the reason, I knew to trust his plan and to let him guide us through this, knowing Id still have rough spots dealing with this emotionally. I remembering before this, begggging all these doctors to please tell me what was wrong with my baby, I swore once I had answers I would accept them, I will be okay with it, no matter what terms they were under. At this point, I couldnt, I could not be okay with the answers I just got. "He has floppy airway, there is nothing we can do, time is the only cure" So I was just told, that when my son stops breathing, its because his airways bc closed shut, and there is nothing I can do? When my baby goes into coughing mode and I cant get him to stop there is nothing I can do? My son has to sit through all this with NO HELP? Just my comfort?! I wasnt having it, that will NOT happen, we will do something about this, He will not suffer anymore. For weeks, all I heard was "atleast you have answers"" arent you happy it wasnt worse?" Yes I know why he does this, I know why hes sick now, but its pointless, there is NOTHING I can do to help him. No Im not happy with the answers, the answers I got was to basically sit back, and not being able to intervine when my son is SUFFERING. It took so long to be okay with this. Here we are a year later, and he is breathing fine. No stridor, no retractions, no o2 monitors have been used for awhile, no o2 has been used. Next Month marks 1 year since he has been hospitalized, and he gets his MRI on his head. If the MRI comes back clear, o2/monitor is going back to Apria. I can not believe one year ago we were where we were, and today Im sitting here with this crazy little boy who is so happy. His laugh, his smile, his eyes, everything about him is so amazing, and he is truly my hero for so many reasons. He brought me to a place in my life that I really know what being grateful meant. My whole life was put in a different perspective beause of him. At his own cost, I snapped into reality and learned what life meant, and you are not promised even 60 seconds from now. He has taught me faith, and he has gone through so many journeys in just a short 26 months of his life, and because of him I have made sooo many new lifetime friendships. I will take every lesson I have learned on this road to my grave. I now know how strong my family is, and I know the 3 of us can get through ANYTHING, as we got through this. And there is NOTHING in the world I would want anymore than knowing that.