Yesterday we got some great news! Possibility the greatest most exhilarating and terrifying news of all….we can start tube weaning.
Clark has been 2 weeks without his tube feeds. He’s eating about every 2 hours and maintaining his weight. He will go to a new GI doctor next month to build a plan. This doctor is the head of the pediatric GI department.
We still have to use Clark’s tube, but not for meals. He will only need it for some medications and extra hydration. This morning I changed out his Mini so that he had a fresh new one in for his journey. There was a lot of crying, screaming, kicking and flailing. He HATES having it changed. His daddy has to come and hold him down a bit for me to change it out. We have authorization from his surgeon to bring him in for tube changes, because it is just so traumatizing for him, and the last thing we want is for him to associate us with the terrible tube changes. I changed it out at home so we didn’t have to schedule an appointment and throw him off his current routine.
We are very excited about this.
Do you know what this means!?
No more mixing formula.
No more cleaning extensions and syringes
No more feeding pump going BEEP BEEP BEEP
No more feeding the bed and having a room smell of formula
No more panic because I forgot a tube supply at home
And as my husband says “no more telling daddy to do things he doesn’t understand” (He can’t operate the feeding tube)
We just have to make sure that Clark gets in a minimum of 1200 calories a day.
You’re probably thinking..what 1200? That’s not right.
No, that is and it’s a MINIMUM. Clark burns more calories than a normal toddler. His muscles have to work harder and he’s sensory seeking because of the Autism. So he’s a non-walking, climbing, bouncing, cookie eating, toddler.
It’s all good though. I made an almost 300 calorie cookie thanks to Benecalorie.
So Tube Weaning away!