Friday, November 2, 2012

Love Hate Relationship with the Feeding Tube

The feeding tube. It can drive me a little crazy at times.  I will start with the good.  He would not be alive if he did not have his tube.  He can be fed anywhere anytime.  He can be awake or asleep.  He has never been dehydrated due to the tube: formula, water, juice, pedialyte no problem.  All medications through the tube, life saver once again.

You think about how to feed a kid in a one piece costume....
The things that are a bit odd.  I am supposed to count every calorie that goes through his tube.  I try not to be obsessive about it.  I don't write down his feeds anymore (that stopped about a year ago).  I do know that one ml of formula is 1 calorie.  I do know our calorie goal is 900 per day to gain weight.  It appears at 820 to 850 he maintains his current weight.  I know there are approximately 30 ml in 1 ounce; I learned this when he was still in the hospital as a new born.  I go shopping for juice and look for the highest calorie juice I can (140 cal per 8 ounces is good 110 or 120 and I will pass).  He is on soy formula, no milk.  I tried some other cool drink that had a whey protein, that made him puke for 6 hours.  He cannot have dairy, lesson learned after the dry heaves, puke through the nose, shakes, sweats, etc.  The child walks over to the scale every day to weigh himself, that is so not right on so many levels.  We are in a mode to try to gain weight.  I was back to waking up at night to feed him at 3 am it was rough.  I backed off for two weeks but will probably resume again as he is only maintaining.  He can only get so much in his stomach by day before he throws it back up.  If I put in too much it is coming right back out, so you guess and you push it a little and you wait to see.  With teething and illnesses it is harder as he tolerates less volume. 

He literally is on the scale every day...we ruined him
The hardest part.  Is him not eating, at all.  It is so difficult that he cannot swallow anything.  I mean a speck of egg, a crumb of gold fish, a mouthful of baby food.  Sometimes a sip of water although that may choke him out.  It gets extremely difficult to try every day to feed him watching him move the food to the roof of his mouth or to the front bottom lip so he can just lean over and let a slimy wet mess of slobber and food pour out of his mouth.  It is almost panic, maybe fear, disgust.  I don't know.  He likes to say and sign All Done during these times.  He will lick salt from crackers, pretzels, etc.  Hell, we have put a pile of salt on the table and watched him go to town.  Change that to sugar or baby food you will get an All Done almost instantly.
Give the kid an empty bowl he is happy as can be...add food he is ALL DONE
The extreme hardest part.  No one knows why.  The list of possibilities: he never learned to suck swallow breath, he had a bad heart, bad lungs, he was on a vent at birth, he breathed way too fast to attempt to feed the first 3 months, he has sensory issues, it is behavioral, it could be structural, blah, blah, blah, blah.  At some point his not eating cannot be blamed on his terrible health at birth.....he is 2.5 years old.  His heart has been repaired for a year.  How can it be sensory when he picks up the food, puts it in his mouth, and tries to swallow.  ARGHHHHHHHHHHHHHHH.
He is showing me how to relax
Where are we know.  He is 100% tube fed, zero calories by mouth.  He has feeding therapy once a week.  We are following up with a feeding guru Marsha Dunn Kline in Tucson next week.  She saw him last year and help us with open cup tasting (it is not drinking) and crumbs (it really helped him get the food from the table to his mouth).  We are hoping she will have some more ideas.  We then move on to a repeat swallow study to check for aspiration, maybe he is protecting his airway because it goes to his lungs.  He was tested at 7 months old with  one sip and one bite and supposedly passed.  He tends to choke on water (bath tub, swimming pool) every time.  After that evaluation he will be scheduled for an in depth scope of throat and his whole GI system under general anesthesia to see if there is a medical reason he cannot swallow (I just might be praying for something we can surgically repair at this point, that is how frustrating it has become).  And the last straw is we are on the waiting list for an intensive feeding program at our local Children's Hospital that I don't even like because I am desperate.
All full of laughter
Just some more observations.  A typical child (I have one of those too) will eat when they are hungry.  David is never hungry.  He does not get whiny or grumpy if you skip or delay a feed or three.  When they have a growth spurt they eat more calories, I get to choose when David will get more calories whether he wants them or not.  When a child has an upset tummy they will not eat.  I shove it in the tube and find out after he pukes that he is not feeling well.  Using food as a reward is not possible with David.  There is no m&m's for potty training or a sucker if you get your haircut or here's a bowl of cheerios to eat on the way to Nana's.  No birthday cake, no smells of your favorite foods, no trick or treat candy, no Easter candy, no chips and dip (that is my favorite, just sayin), it is really bizarre when I think about it.

On a day to day basis.  I tube feed him throughout the day.  Day care is trained and they feed him at school.  After a hot day on the playground he may get some water in his tube.  Usually, we push formula or juice for the calorie needs but water at an amusement park or the zoo is a great help.  I always fear when day care calls that it will be "the call" that his tube came out.  So far it has never happened (only at home).  He wears a onesie under his shirt so that he can't mess with the tube (he has pulled it out before); I am not sure when that will stop so we can try to potty train him.  He is a toddler so making him stop playing to be fed is very annoying to him lately.  The other kids obviously know he is different but to them it is normal for David as they see him every day.  Sometimes it embarrasses Zachary because people stare when I feed David in public.  I never mind when people stare, hell it is odd/different/strange/unique.  I do answer questions when someone works up the nerve to ask.

He loves to help

At the end of the day, this is really all that I currently have to complain about with David.  He is healthy in every other way and he is growing and learning.  The tube makes it possible to fight infection, get nutrition, grow, learn, play, laugh, etc. Hail to the tube.  To everyone walking by he is a little boy that happens to have down syndrome.  Sometimes it is like a dirty little secret that catches people off guard when I lift his shirt to feed him (you can see the look on people's faces).

He is learning to kick a ball and to catch, he throws great

Thank you for the therapy session. 

1 comment:

  1. Oh man, I feel you. You really expressed yourself well. I am so so sorry. I wish I had answers for you. What I do know is you are right, it is not simple. It may seem like it at a quick glance, but it's not. I am praying big time for David, and you.


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