You would think after 7 years of this, I would know better then to go into a Dr's appt with preconceived notions of what the appointment will be like! I went into our GI appt today expecting it to be very quick and simple. I thought they would be happy he is gaining weight, happy with his labs and want to just keep everything status quo. And that is how the appointment started out. But as Dr. N and I started talking more about the impossible situation we are in, he started thinking outside the box and we came up with a new plan.
We have been stuck for a long time. Alex's GI dysmotility really limits how much we can get in interms of calories and fluids. On top of that we have to drain Alex's stomach into a bag 24 hours a day. He loses about a liter a day in fluids. There is no way for his little body to compensate for this amount of fluid loss day after day. So we are stuck using his port every night to give either TPN or IV fluids. We tried to stop using his port to replace these fluids this summer which caused the weight loss and severe fatigue we saw. There has been some discussion about a medication to slow secretions however, these generally aren't used in neurologically in tact kids because they dry you out and can be pretty uncomfortable.
So fast forward to today....We know one of the reasons Alex loses so much fluid is because his pylorus (opening between the stomach and small intestine) is completely shut. Alex had a surgery several years ago to open Alex's pylorus but it was unsuccesful. Dr. N wants to try dilating Alex's pylorus once again and inserting a tube to hold it open. His hope is that we can get some of the stomach juices to empty into the intestines instead of a bag. If this worked it would be great. However, there are some potential issues that could keep this from working. At least it is something to try!
After our appt, we were able to meet some friends for lunch and a quick trip to the park. Now a quiet night before we head in for our infusion in the morning!
Please pray Alex does well and has no reactions to the infusion.