Awhile back, Noah and I packed everything up and went to spend the night at Nana's house. I stayed too, just in case. He did great, although I don't think my poor mom slept at all that night. Last night, I did not stay.
Packing for an overnight stay is a little exhausting. The back of the van looked like we were going for a week. I had his vent, suction machine, co2 monitor, sat monitor, the vent heater, a bag full of machine cords, the go bag, an overnight bag and one bag just to hold all of Noah's favorite blankets and babies. I carried everything over there and helped mom set it all up.
Noah had already been talking about spending the night. The only thing he was worried about was that Nana would close the door or turn the light off. I kept reassuring him that wouldn't happen and so did Nana. He was so excited and ready to stay. Then it was time for us to leave. He looked at me and said he wanted to go with me. My heart sank. We had already discussed that if he was really scared and wanted to leave that I was not taking all the equipment apart and packing it back up. I decided that if he did this, that I would just spend the night also. I reassured him that it would be fine and reminded him that his Honey (his sister, Hannah) was spending the night also. He thought about this for a minute and then agreed. We kissed him and left. I had no worries leaving him in my mom and dad's care. It was a sad but great feeling at the same time. I was happy to let him stay but realized that my little boy is growing up.
It was so weird going to sleep without the sound of the ventilator. I slept all night, the first time in almost 4 years, with no alarms, no wooshes of air, no beeps. It was amazing. It was time. I knew he was ready and so was I.
I can't imagine how scary that probably was for my parents. I've always tried to put myself in other people's shoes to see how they would feel. It is a huge responsibility. But, my mom was trained at the hospital with me and I knew she could take care of him all night without me. Noah is very stable and the only alarms that occur are false; there is water in the circuit, the sat probe is loose, he is laying on the circuit, etc. We live about 20 minutes away so I told my mom that if she got scared, just wake him up and call me. I'm so proud of them for taking this big step and letting him realize that just because he has a trach and a vent that he can do the same things as his sisters. I am determined that his diagnosis will not hold him back and that he will never feel penalized for having CCHS. Yes we have to take some precautions and it sometimes takes a lot of planning but it is so worth it in the end.
Thanks mom and dad for helping Noah be "normal". I know how scary that was and I'm proud of you.
|Noah sleeping peacefully at Nana's and Poppa's house|