24 Oct Update
Keegan is still doing ok with his feeds. Last night right after Gray left to go home, Keegan started to choke and cough, which pushed his ng tube out a bit. He was pretty upset and ended up pulling it all the way out. I had to sink it again around midnight, which required three nurses to hold him down and then waiting for an xray to check placement. We are definitely going to need a sedative prescription to go home with because there is no way I could do that by myself without calming Keegan down first! After that, he slept pretty well overnight. He woke up at 5am pretty fussy, but he finally went back to sleep until 7am. While I showered for work, Gray had to let Keegan sit on the couch with his own piece of the newspaper while Gray read his section. It was the only thing that calmed him down! It was too cute, and we’ll post a picture when we’re finally able to figure that out.
Dr. Brown came by late last night and was very encouraged that we had found the root of the problem with the Bactrim allergy. This afternoon, we increased his feeds to the 50ml/hour rate Dr. Brown was looking for and turned off his TPN and lipids. Keegan has done very well with the volume, and if he continues to do well with it overnight, they will increase the caloric value of the formula to 30kcal/ounce and decrease the volume to 40ml/hour. This jump in calories is more likely to give Keegan some trouble than the volume increase of the last two days. Please pray that Keegan handles the calories well; he desperately needs them! He is now on just an ng tube. He still has his picc line, but he’s completely switched to oral medications now, no IV drips. He is still battling anemia, so he’s back on meds to help that. He will continue on with the steriod, zantac, and blood pressure medication for now, and he’s on the lowest dose of immunosuppressant (prograf) that he’s ever been on.
Keegan’s seemed a bit more tired today, but overall, he’s still has his smile and is still giving out high-fives to anyone who asks. If all goes well over the weekend, the transplant team is working to have things in place for Keegan to come home on Monday. We appreciate your prayers for Keegan, and we ask that you continue to keep him lifted up. He still has a long way to go, and the strength of your prayers and God’s love for him keep him going and growing. Thank you.