Reality

After two years of living with a special needs child Todd and I have learned the in's and out's of Payson's care. We are so comfortable with his care that we have become complacent. We just do the same routine day after day maintaining the normal so that we can just sail right on through to the end of our "trach" period. (Which after our scope last month we should be capping, which means closing his trach forcing him to breath like normal, by the end of next month...after surgery). Yet, Payson had other plans and wanted us to revive some old unused skills last Tuesday night.

Todd and I had spent last weekend in NC with my family. It was just Todd and I sans the kiddos. It was a fabulous weekend, but that is another post. Because all last weekend was covered 24 hours a day we had to make up hours so last Tuesday night we decided to do the night shift. For us night shift is typically easy we have to get up to add more to his feed answer alarms and suction him, but it is normally 2/3 times a night you have to get up. Pretty easy that is until last Tuesday (12:30 Wed. morning)...Todd and I were both in the office downstairs chatting it up. He stopped mid-sentence and asked if I heard the alarms I said no and went on with our conversation. A few seconds later he stopped again and said his alarms are going off then ran off. Within seconds he was calmly calling me upstairs. Now, usually when Payson's feed has come undone and he finds it he calls me up to help him change sheets, but this time he had some urgency in his voice. When I arrived at Payson's bedside I saw a mother's worst nightmare. My miracle son was once again struggling to stay alive. He was blue, unresponsive and unable to breath. His eyes were rolled back into his head. It was his eyes that took me back...it was the same look of Payson being in there, but he wasn't there, it was the "help me, I am scared" eyes despite that he was looking past me. Tears filled up my eyes and we both jumped into gear. Todd had the bag out and was trying to take breaths for him; I was getting another trach ready for him while calling 911. We did a trach change still not response just dead weight when I tried to sit him up. I put him back down and we bagged again. Todd was calmly, steadily and urgently doing all he could think of to get Payson breathing. We sat him up again and patted his back firmly. Within seconds he threw up and finally he reassured us with his voice. I left Payson with Todd while I ran downstairs opened the door for the paramedics and woke Walker to call Sara. I run back upstairs and the paramedics are on the sidelines letting Todd do his thing. I jump in and suction him. The more stimulation we give Payson we are slowly getting a response. First his breathing was re-established, and then his color and lastly his eyes allowed his soul to shine through. Despite Payson being stabilized he still wasn't himself so we got him ready, (meanwhile cops and paramedics are just watching us do our thing asking if we both had medical training...911 is useless for a special needs child except for transportation.) By the time we got his vent, bags and him ready to head to the ER he was his scared feisty self. I knew he'd be okay when he fought me trying to put him in the seat on the ambulance telling me no and shaking his hand side to side. Todd knew he was okay and that he hadn't been deprived of O2 for too long when he heard the sirens on the ambulance and was in amazement. He was so enamored with this ride that he wanted Todd to take pictures/video. By the time we were at the hospital he was fine. A chest x-ray, EKG, evaluation and 5 long early am hours we were home. Despite the lack of sleep since it was 6 am he decided he was too energetic for sleep and began to play with his sister. Todd and I were emotionally and physically tired. Seeing your son that close to the danger zone and having to bring him back wipes you out. Unfortunately, we didn't have nursing until 9 am so we hung in until then.

As if this wasn't enough...less than 12 hours later Payson was outside laughing and running around like a wild man. Suddenly I hear him screaming. Todd walks in with the nurse and tells me to get ice. When I saw the huge knot and scrape in the middle of Payson's forehead I just looked at the nurse and said I can't do this, you need to take over. I just couldn't muster the energy to comfort him. It sounds mean I know but I was in self-preservation mode; the night before killed me on all kinds of levels.

Less than a week later and all is well. He is back to his spunky, fun self. He even went to church with us today for the first time in over a year. Mom and Dad are okay too. Needless to say one of us remains close to his room so we can be sure to hear his alarms, we also check on him and suction him a lot more and when we hear the alarms we no longer hesitate to see if it stops we go up. Teaches us for getting too comfortable!

I will post video/pictures of the boy soon. I will also blog about our North Carolina trip and give a summary of Payson's medical outlook after the scope! Whew I have a lot of catching up!