Tonight Luke's TPN (IV nutrition) was taken down and a new one was not hung. After three months, Luke is finally off IV nutrition. He is getting all of his calories through his feeding tube (going into his intestine) but this is big news. It means less chance of infection (being off TPN) in his blood or port, it means his intestines are working well enough to handle liquid Nutrition to meet his calorie needs, this means he can work on eating. In the end of December it did not look like this was a possibility; it looked like TPN may be his new normal. Thankfully Octreotide was trialed as that is when improvement started.
Luke is on a bland (basically breads) diet right now. He gets sick and/or has belly pain each time he eats except for the past two days. But then today he has eaten nothing at all. He continues to require his stomach to be constantly drained. It continues to drain green more often than not which means his gut function isn't normal. Bile shouldn't be in your stomach.
Luke continues to require 24 hr IV fluid through his port. This is just salt water and it keeps his kidneys happy. His kidneys require a lot more fluids getting into his body each day than the average teen. The plan is for him to come home on this. His intestines will not take an additional 3oz an hour of pedialyte to keep him hydrated enough to be off the IV fluids. The medicine he needs (Octreotide) is given by IV twice a day so he will continue on that as well.
His backpack will inclue his IV pump, IV fluid bag, feeding pump, and bag of formula 24 hrs a day. He will have to continue on a bland diet for now and then very slowly reintroduce foods if that consistently goes well.
We are finally seeing a light at the end of the tunnel and making discharge plans. My guess would be next week. We will likely hang out at Ronald McDonald House a few days as Luke has a habit of getting sick with in a few days of discharge. Also if he needs to see any doctors or have labs after discharge we can do that as well.
We are not sure where Luke will be in the next month's or year with his gut function. Optimistically, he will get back to his normal eating everything by mouth. But then there is also a chance he will end up requiring IV nutrition again. No one knows. This has been Luke's life... Figuring out the why's or what will be next has never been easy. We just have to let his body tell us what he needs.
reading
dog visits
Art therapy
Over 900 places on his Show Luke The World maps and still adding more!
scavenger hunts
medical tests
PT in fun places
The other kids are having their own fun
super bowl party at youth group
Logan (sitting in fluorescent yellow pants) winter camping with Boy Scouts
The boys volunteering with their Scout Troop at Feed the Children packing boxes.
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