They met me half way across PA at the rest stop for lunch. My dad was able to come back with me so that was great for Luke.
Monday was our care conference. The test that Luke had following contrast through his intestines did not show scar tissue or partial obstructions. He subsequently had a CT on Tuesday which confirmed this (along with the abnormal look of his small intestine especially after not eating for over 10 days)and now has left him with the diagnosis of chronic idiopathic pseudo obstruction.
Basically we dont know why but his intestines shut down and dont work. It has been reported in happening to transplant patients.. and once again he has won the rare lottery.
There was conversation about needing a bowel transplant in the future, going home on TPN, this being chronic and no fixes for it, quality of life, and of course how they were optimistic this wasn't going to be the case but now it is.
A medication (Octreotide) was offered to be tried for 5 days. It is a nightly injection given to Luke that is used for tumors normally but can be helpful to the small intestine that doesn't want to work properly. I don't think many felt it was going to work, but he started it Monday night and by the next day his belly seemed better.
So we went with it and started another trial of pedialyte slowly dripping through his tube. There have been some times where his belly hurts but for the most part it looks so much better. Not large and distended, no fairly constant pain or discomfort, and it is really soft. Each day we are going up by 5ml/hr. Today we are up to 15 ml/hr (three teaspoons an hour).
Tomorrow we will have another discussion with GI about the plan now (since this seems to be working). Plan for how much is our goal through his intestine feeding tube, what is our goal to have going through it, any possibility of eating by mouth, what should we have achieved to go home, what are the plans once home, and how this medicine typically lasts/works for others who respond. Of coursegetting it approved by insurance for home will have to be begun.
Tuesday my Dad, Kyara and I headed home so I could work New Years Eve and New Years Day. Kyara and I headed back on Friday.
not feeling great last night
He won this scarf at BINGO and has worn it since
Luke didn't quite make it until midnight but he did have a little sparkling grape juice (and drained it out of his belly through his feeding tube) before midnight. We did make sure to have a midnight picture done.
After the meeting I think I just needed to not think of the reality of what we discussed. Sometimes just getting through each day and not thinking about the details of the future is easier. Then the medication started to look like it was working. I'm not sure how much is changed from that conversation but we will hold onto the small victory of the response to this medicine.
After the meeting I think I just needed to not think of the reality of what we discussed. Sometimes just getting through each day and not thinking about the details of the future is easier. Then the medication started to look like it was working. I'm not sure how much is changed from that conversation but we will hold onto the small victory of the response to this medicine.
Continuing a ton of prayers for Luke, you and the family -- I think you have it right -- one day at a time. Celebrating the small victories --- and hoping for a few big victories too :)
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