22 Oct Update
Keegan did ok yesterday. He was in a decent mood much of the day despite a few problems. His picc line has migrated out of the vein it should be in. It’s not a huge problem, but it means we can’t increase the strength of his TPN to an ideal amount. The smaller vein the line is in can’t handle max glucose. We tried a “power flush” of saline to try to push it back here it should be, but that didn’t work. The picc line team can’t get him on the schedule until Monday to go to interventional medicine to get it fixed. So, the plan now is to start pushing his stomach to wake up and tolerate more. We tried some pedialyte yesterday, but his oral aversion to food is pretty severe. We could only get him to take about 3ml of pedialyte yesterday between the bottle and a feeding syringe. We don’t know if it’s related, but last night he seemed to have some more stomach cramping for about an hour before he tuckered himself out. He’s still pretty low on energy, but we’re getting a few more smiles and a bit more playtime in a period now. His weight is down to 15.75 pounds.
He slept very well last night and has been in a pretty good mood so far today. He will not take a bottle at all, but he has had 5ml of pedialyte by syringe. We’re going to forge ahead with an ng tube today. Dr. Fixler said they will let him try to take some by mouth for a period of time, and then supplement by tube. We will start extremely slowly with just a small amount of pedialyte at a time to “wake up” his stomach. He has only had two little bowel movements each day this week. It’s definitely slowing down. He had a lot of blood in his diaper over the weekend, but none since then.
Keegan played on his own in his crib just long enough for me to type this up, but it looks like he is getting a bit tired now. We’re hoping to go back to the playroom for some playtime this afternoon, and we try to walk around the floor a few times a day in his wagon. We’ll post more later. Thank you so much for continuing to lift Keegan up in prayer. We’re here for the long haul, not going home until things are back on the right track for good. Thank you for your continued love and support.