The Dreaded nose tube test.

My morning began at 5:45 am. I got up made sure everything was ready for me to leave the rest of the kids for most of the morning. I waited until the last ten minutes before it was time to leave to get Ronan up since he couldn't eat I didn't want to give him too much time to dwell on it. After getting him dressed we took off and headed to the hospital. This is the hospital I am most familiar with unlike the childrens' hospital. Because I have been there more than my fair share I could navigate this hospital in my sleep.

I made my way to endoscopy and this is the first time I became aware that they have an entire unit just dedicated to endoscopy. I had no idea there was that great of a need for a single procedure. We get there perfectly on time and then the waiting begins. Ronan is a trooper and happily sat in his stroller not even fussing the slightest about having an empty stomach. They finally took us back and realized they don't have a gown ready for him. Several nurses scrambled looking for the right size. They find the small baby gowns and I knew immediately they wouldn't fit. The nurses take off on a quest to find the right gown and return with a giant one that I'm pretty sure Xander would have swam in.

The nurse got all of Ronan's medical history which is pretty extensive and after constantly repeating it I have it down. I'm seriously considering just typing a little book about him and handing it to them each time and saying this is all you need to know about Ronan medically. At this point they had forgotten he has Down Syndrome and when I pointed the fact out during the medical interview they started to frantically pursue anesthesia guidelines for children with Down Syndrome. They came across a fact I was well aware of. Every time a child with Down Syndrome is set to have a procedure involving general anesthesia a x-ray of their neck must be taken.

I knew right away why this was because I had done my homework. Children with Down Syndrome can develop a condition in their neck that can make it very delicate and any kind of messing with their neck can snap it instantly. Ronan was also born with something called VACTERL association and one of the anomalies associated with VACTERL is an abnormal spine so I had done a lot of research and learned about potential damages to his neck.

I however didn't know how serious it truly could be until his PT was at our house one day and Ronan threw his head back in the normal frustrated toddler fashion. She quickly grabbed him and told me to watch him close so he doesn't do that for if he was to throw his head back and he had indeed developed this condition he would snap his neck instantly. I remember that day clearly because I had stayed numb for most of it taking in the horror that had just been described to me. My son could die instantly from a normal toddler temper tantrum.

Fast forward to today the doctors were unsure as to why he needed the x-ray and I was able to explain to them why the guidelines were in place. I did not find it comforting that I had to explain to them that if they put a tube down and he had the neck issue it would probably kill him but I'm glad I'd been armed with that knowledge. They promptly sent us to radiology.

As I got in the elevator and the doors started to shut a man put his hand in causing the elevator doors to open again. He looked at Ronan and smiled . He the turned to me. "Are you Ronan's mom?" I nodded my head and he continued, "I'm the tech that's putting Ronan's tube in. Usually I don't get a chance to talk to the parents because the doctors usually take care of that. But since we're here can I answer any questions or concerns?" That's when I laid all the anxiety I'd had about Ronan keeping the tube in. As we walked separate ways he said "Let me see what I can do to help." I never saw him again.

When we got to Radiology I realized from the multiple grimaces on the receptionist's face that they did not have Ronan in their database. "umm... have a seat we'll try to figure out what's going on. " We waited for about an hour and finally someone came and got us back to x-ray. Back up to Endoscopy we went where we waited for the results. Ronan was bored by this point and took a nap. The doctor came in said the x-ray was normal so they would proceed but we had been bumped a couple of appointments due to the x-ray mix-up. I was glad I had remembered my new book.

Ronan slept until they came and took him back. The procedure itself was quick. I had barely gotten through a chapter when the doctor came back in. "Ronan did great. You'll just have to do your best to make sure he doesn't pull it out. There really isn't much we can do but tape it down well and hope he doesn't pull it out." I felt disappointment swell. I'd put high hopes in the technician to find me a solution. You can do this I told myself as they led me back. That's when it hit me someone was watching out for us. There was my baby floppy from the anesthesia and around his arms were two little braces. I smiled and the nurse saw what I was looking at. "The tech that put his tube in called around to all the pediatric units to ask for suggestions. Finally PICU came up with those. " I knew then it was no accident I had bumped into the tech in the elevator.

Within a half an hour we were able to head home and I got more wonderful news the tube didn't have to stay in 48 hours. I could bring him back any time after 9:30 in the morning and they would remove it. We got home and Ronan had already adapted to the arm braces. He always adapts. I remember I was telling my best friend I feel horrible because of everything he goes through. That's when she told me "To you it's going to seem really bad but to him it's going to be his normal. He won't know any different and because of that he's going to have an amazing ability to adapt to whatever life throws at him." She was completely right. Ronan adapts and hits everything full force. He has to work a lot harder at some things due to the misinformation produced by an extra chromosome but he has been the most resilient person I've known.

I brought Ronan home and he sat in the midst of very concerned brothers who were sure he'd broken both his arm. I assured them his arms were not the problem and he'd be back full mobility tomorrow. He has been wheezing quite a bit and the doctor had warned me the anesthesia could trigger an asthma attack. I have his monitor on him and his oxygen levels are ok so I'm just going to watch him close tonight. I have a feeling we may have one of our 1:00 am ER trips tonight but hopefully his nebulizer will prevent that from occurring.