Things are once again on the upswing! Alex is still having some slight pain, but nothing too bad. We have been working on slowly weaning him off his pain meds. He has now been on fentanyl for a month so we cannot just stop cold turkey or he will suffer withdrawal. We are taking him down by 2 mcg/dose each day and it is working well. We should be done by Tuesday.
Our plan: Because pain meds can slow your motility we are holding until we are off the fentanyl. At that point we will repeat an xray to see if the ileus is also gone. Hopefully it will be and we can resume feeds at that point!
The only real concern we have right now is that his pancreatic enzymes continue to rise. If his pancreas flares we have no choice but to continue on TPN.
My prayers are for Alex to get back on feeds. Alex loves the summer. He loves the beach and the pool and the waterpark and all the fun the summer entails. He can not do any of these things if he is on TPN.
I continue to feel blessed by your support and love. Thank you for keeping us in your prayers.