Without a Crystal Ball

Our Journey through Chronic Illness

“Beep, Beep, Beep”. I shoot out of bed as I hear the alarm of my son’s feeding pump notifying me it’s done. This is promptly followed by a proclamation by my son “Mommy, It’s DONE!” I drag myself out of my bed, throw on a pair of pants that are crumpled in a pile on the floor, and walk to his bedroom. The alarm is still going off, and he is still exclaiming to anyone that will listen that his food is done. My eyes are in a half haze, and I push the total button to ensure he has gotten the full amount of the feed and then turn off the pump. Once the pump is off, I reach over to his extension ensure that it is clamped so that no formula spills out of the tube when I disconnect it. Believe me, the bed has been fed more than a few times! I unhook his extension, and he pulls down his shirt. He jumps to his feet, and he proudly yells, “I’m all done eating!”

Most days this is exactly how the morning will begin. Though, more than a few times will the pump get clogged or a line will get kinked and we are woken from a dead sleep at 3 am. There are days I wish I could take a hammer to the alarm. I hear that alarm even when his pump isn’t running. It has become that ingrained in my psyche. When I think about our journey to this point, I don’t know that I would have ever imagined being a mother to a child that was dependent on a feeding tube to eat. Yet, in the same token, I can’t imagine trying to continue to fight him to eat day in and day out.

After he is unhooked, he almost always wants to go downstairs to play. We take whatever toys we can fit in our hands and walk down the stairs. For a while, I let him quietly play and allow his tummy to digest the food. Within about an hour I will notice he is starting to breathe a bit heavier, he will start to shake his head, and I can hear the gas starting to build up in his throat. I know we need to help get the gas out of his tummy. I let him know it is time to vent him and I need him to lay down. Generally this is met with tears and a mild tantrum because he doesn’t want to stop playing. I let him know I only need two minutes to get the bubbles out of his tummy. He lays down, and I hook him up to an attachment and 60 ml syringe. A rush of air and sounds of gas will start exploding in to the tube and in to the syringe. I pray that a gush of gas won’t send the contents of his stomach exploding all over my hands and shirt. This time I am lucky because nothing gets on me. Instantly, I can see the relief on his face as though he has had the best burp of his life. It’s a curious place to live in when you have to physically burp your child through a tube. This is our life every single day. He hasn’t ever been able to burp, and this is the only way we can ensure he gets the gas out and is comfortable. I never knew how important burping was until my son couldn’t do it on his own.

After he is vented, he jumps to his feet and I can tell he is instantly relieved and able to continue playing. It isn’t much longer after a good “burp” that he tells me that he is hungry and wants to eat. Eating for him is not like eating for you or me.

“What do you want to eat?” I ask him.

“Chips, crackers, and apple juice,” He exclaims with a jump in the air.

Due to his inability to chew and swallow, his diet is very limited but he still enjoys eating. I give him his cheddar and sour cream chips, a couple club crackers and a sippy cup of apple juice. He sits at the table, turns on his iPad, and starts to munch on his snack. A snack for him will take about 30 to 45 minutes because he takes very small bites. He also won’t eat very much of it. After he’s satisfied, he will get down from the table and exclaim, “All done eating.” Most parents wouldn’t be happy with his diet. It truly is almost entirely void of any nutrients, but I am always elated when he will put anything in his mouth. There is always the benefit of knowing that he will get a bottle of formula that is completely balanced nutrition. This enables him to learn to like food without worrying about having to force him to eat foods he can’t chew or swallow.

He will get back down and start to play with his trucks and cars. I will start to clean up his mess, and I know it will be about an hour before he will need to be relieved again by venting him. We typically vent him by hand 3-4 times a day, and then when he’s fed overnight he is vented continuously through a bag that attaches to his feeding bag. Having a tube fed child isn’t the hard part for me, it’s having a child that cannot burp that makes this more complex. Typically I am watching him like a hawk when he plays because the gas can build up at any time. It wasn’t too long ago that the bubbles in his stomach got so aggressive they pushed up his esophagus and completely blocked his airway. He had blue lips and was incredibly pale. In order to ensure this doesn’t happen, I am diligent in watching as he plays to ensure the gas is relieved before it gets out of control.

After he takes a nap, we get ready for dinner. He will proudly point out everything we are going to eat for dinner. I will typically ask him, “Do you want to try this food?” He will always look at me with this funny face and yell, “NOPE”.  We still want him to feel like a part of the family, and it’s important to us he know the social aspect of eating. He will sit at the table. I will fix him a small plate of something. Most of the time he doesn’t touch what I put on the plate. He will watch us eat and ask us if it tastes good. We will offer the food again, and he will always decline. Even if he can’t eat, I know he appreciates being included in the meal.

The evening wears on and it’s time to get him hooked up to his pump for his overnight feed. We give him food over night because his body can’t tolerate large volumes of food at any one time. His digestion and inability to burp makes it challenging to give him large quantities. The overnight feed allows him to be fed while he sleeps while getting a slow drip of food to his stomach every hour. We prime the machine, hook up his Farrell bag, get him connected, and then we tuck him in. Most nights he ends up tangling himself in the cords, his alarm beeps because he’s kinked the cord, but eventually he gets situated and he goes to sleep.  We listen for the alarm throughout the night, and most nights we get through without disruption. We wake up to do it all over the next day.

This life isn’t typical by any stretch of the imagination. However, the tube has given us a freedom and a sense of calm. No longer do we have to worry about what he’s not eating. We don’t have to fight him to sit at the table. For the first time in his life, he can play and be unencumbered by the stress of food. Feeding tubes are definitely a life changer but for us they have been a life saver. I wouldn’t have our days any other way.

 

 

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