love+lungs=life for luke: had to stop feedings and one more child in the ER

Formula was added into Luke's tube feeding (half strength) and 2 hrs later he started with belly pain and nausea. So all feedings were stopped through his tube. He had shown signs his belly wasn't doing as well (bile draining from his stomach tube). The injection medicine was switched to IV form and given twice a day now. We will see if it helps make his intestines start working better.
He will likely need to go to Columbus, OH to have motility studies to see where his intestine isn't working. If it is just his large intestine he can have an ostomy done which should help. If it is his whole small intestine then that won't help. I asked what timeline they look at for if the intestine can still recover and work. The Intestinal care specialist Dr said 3-6 months. After that you don't really see recovery which would mean the only hope would be bowel transplant.
We are getting to the end of what we can try to help. So it may just be a wait and see what time brings. There are a couple of things we are going to try but it is looking less hopeful he will get home being able to have any type of feedings .
I do love that his GI doctor gets the psychological impact and let's him "drink and drain" what he wants. So he can drink things and then let them drain out of his G tube. He gets upset we are "wasting food" but he is really enjoying tasting something. I went to Target last night and got him some yogurt smoothies and juice smoothies to drink.

This winter is not our kid's winter! It started with Luke's surgery and intestine issues, then Carline had her first Grand Mal seizure before Christmas, and now Gregory. Gregory is our athlete who loves sports. This winter he is playing with two winter soccer clubs and one basketball club. Last night he was playing indoor soccer and after making a left footed shot he fell. Glen took him to the ER and he fractured his hip. I have to go home today, work tomorrow and come back tomorrow. So I will bring Gregory back to see orthopedics Monday am. Logan and the little girls are being wrapped in bubble wrap and put in a bubble!

On Facebook we now have an event for Luke called Show Luke The World. People are posting pictures on the event page of places they have been or live all over the world. He has a world map and a US map. He finds the town and puts a sticker on it (Google maps is very handy). It has been a great way for him to see things all over the country and the world as well as how many people are supporting him. This year (7th grade) is geography so it goes along well with that too .