Tubin'

Have you ever wondered what Xander gets put in his tube every day? Well your wish is about to come true. He gets his meds and vitamins twice daily, double the amount you see here, and his formula.


90 MI CMP Ursodiol 60mg/1ml susp
Sulfamethoxazole w/TMP susphit
Ranitidine 15mg/ml syrup APO
AquADEKs
Aqua-E
Rifampin 300 mg/ora-sweet-sf-s 10mg/ml
Calciferol 8,000 unit/ml drsch
Mephyton 5 MG tablet ATO
Lactulose 15GM/15ML Soluthit

Pregestimil, 30 calorie per oz.
Medium Chain Triglycerides Oil in every bottle of formula

Does that clear it up? haha Seriously, it’s a lot so I have a chart that states what he gets and when. I also keep several lists with me at all the times because I am constantly asked what he takes by every medical professional we see. And rather than trying to communicate it all, I just hand them the list. Makes my life so much easier.

At night, he gets formula pumped in through his tube over a 10hr period. Xander has a fat malabsorption problem due to his condition. Since only a little bit of bile is getting into his intestines from his liver, the hopes is that by pumping a little bit of formula over a long period of time he will digest more of it. Does that make sense? So instead of cramming his body with one big feed where there isn’t enough bile to digest it all, we are giving him a little bit over time. It seems to be working. Keeping my fingers crossed that it continues to work so we can get him nice and big.



The stethoscope is used when we insert his tube. We have to get an empty syringe and pump a little bit of air into his tube. While pumping the air we listen to his belly and see if we inserted the tube correctly. If we did, we hear a Woosh. If not, we have to re-insert. It's nerve racking but I'm getting better at it. Xander ensures I get plenty of practice. He loves to pull his tube out weekly.