Imagine this scenerio: You and your spouse are driving in the car. It's a beautiful evening, you've had a busy day and your children are all snuggled in the backseat ready for a long ride home. You look in the rearview mirror and see that your baby is asleep in his carseat. All is right with the world. Or is it?
Scenerio #2: You have had a busy day and a long night. You sit down to feed your infant and he falls asleep. You reposition yourself on the couch and lie your baby on your chest. Both of you take a nice peaceful nap together with you holding him on your chest. What a peaceful scene. Or is it?
Scenerio #3: You've spent the day at the zoo. Your baby is in the stroller and falls asleep. You finish your walk through the zoo while your baby sleeps peacefully in the stroller.
Scenerio #4: You and your family have a late evening and go to a restaurant to eat. Your baby is tired from the busy day and falls asleep in his baby carrier while you are eating. You finish your meal while your baby sleeps beside you.
Now, imagine your baby has CCHS. None of this is possible without a lot of planning. In all of these scenerios, a ventilator would be a necessity.
CCHS scenerio: You notice that your child is asleep in his carseat. First of all, you would have probably already hooked him up to his vent before you started the car. But, if for some reason you forgot, you would immediately pull over and hook him up.
CCHS scenerio #2: You cannot fall asleep with your child on your chest without lugging the ventilator in the room, unhooking the heater wire and making sure the battery is full and the inline HME is in the circuit. You hook him up while the tubes hang off of you and the couch.
CCHS scenerio #3: Your child can sleep at the zoo in the stroller but you must first make sure that your vent is packed for travel and hanging on the stroller somewhere. You must secure the circuits to make sure the stroller wheels do not run over them and if necessary, your pulse ox should be charged and ready to be attached to baby's foot.
CCHS scenerio #4: You try to plan your meals around naptimes so you don't have to carry the ventilator. However, sometimes thats not realistic so you throw the vent over your shoulder and carry your baby into the restraurant while trying not to unhook the circuits accidentally, which would cause the vent to beep loudly. You walk in the restraurant with people looking at you strangely and try to find a table that can accommodate you, your family and your load of equipment.
All of the above "normal" scenerios happen all the time without anyone thinking about them. Walking, talking, eating, swallowing and breathing are all things you do without thinking about it. We tend to take these things for granted. But what happens when your body doesn't breathe? Life is so much more complicated. The ventilator becomes a vital part of your life. Even such simple tasks such as travelling in the car, eating out and taking a nap snuggled up with your child becomes complicated. Usually a sleeping child evokes a peaceful, calm feeling in people. For CCHS parents, its a whole different story. We worry that our child's machine will malfunction and we will not know it, we worry there will be an accidental decannulation during the night and the stoma will close up, we worry that our child is getting adequate ventilation so the CO2 will not climb. When I see a sleeping baby now the first thing I think of is that they need to be hooked up to their machines.
My point is that everyone takes the simple things in life for granted. Take the time to slow down and enjoy the little things. Just walking to the bathroom is a miracle for some people. Talking is the main way of communication but some people must find alternate ways, which makes life more difficult. Eating is usually enjoyable but imagine if you must eat through a feeding tube while everyone around you is enjoying their food. Swallowing is something that happens without you even thinking about it but imagine a life where you can't swallow; how hard would that be? Breathing is a vital, necessary part of living but imagine if your body forgets to breathe, which is what happens in Noah's case. If you don't breathe, you die. It's as simple as that. So the next time you walk to the table, sit down and converse while you are eating and swallowing your food and breathing, just remember how blessed you are. Count your blessings and enjoy every moment of life.