Well, Saturday went well until around 6pm. Keegan seemed to be doing ok on 50ml/hour of the 20kcal for most of the day. Around 3pm, we increased his calories to 24kcal, and after about 3 hours, he started having diarrhea again. So we went back to 20kcal, but this morning, he was still having an upset stomach. The GI dietician thought that we may need to alter the plan to reduce volume first and then begin the calorie increase. We decreased his volume to 40ml/hour and are going to leave him there with the 20kcal formula through the day today. So far, so good with that combination. We'll try again tomorrow to increase his calories to 24kcal at 40ml/hour. Keegan's weight is still at 15pounds (it was up to 15.3 yesterday, back to 15.18 today), but he's not actively losing weight anymore like he was last week. You can feel every rib and his little spine when you rub his back; it's so sad. He pulled his tube out again, and we had to sink it back today - not fun. He still does have his picc line. We're still able to use it for blood draws, so at least he's not being stuck every day for labs.
He's still only taking a pacifier dipped in water or a sip or two of water from a cup. He's stopped taking pretty much all of his meds by mouth except for his prograf, so most of them are going through the tube. He's had a temp of about 99.5 since last night; don't know what that's about, but it's not technically a fever until 100.5. The lesion on the back of his throat is starting to heal. The dentist that came up to see him thinks it was part of the hives that just showed up on his throat before his body. The are more red than white now and not as puffy, so the dentist thinks they're healing well, just slowly. They are obviously a big part of why he won't take anything by mouth, and they must itch because Keegan will periodically suck slowly and very deep on his pacifier to itch them.
So, I don't think we'll go home tomorrow but hopefully soon. As we said before, we'll stay as long as needed to get Keegan on the right track and through enough hurdles to feel safe going home. The goal is of course 30kcal formula at 40ml/hour continuously. Dr. Brown said he'll go home on continuous feeds because he needs the calories to get his weight back up. The transplant team is working to get Keegan set up with a feeding therapy program through Baylor Frisco that is supposedly really great. That will be nice since our pediatrician is also at Baylor Frisco.
I was finally able to get some pictures up yesterday morning, so be sure to check those out if you have a chance. We hate posting pictures when he's so skinny, but at least you can get your "Bug fix".
Please pray that Keegan does better as we try to increase his calories again tomorrow. His system has been taxed for a long time, and it will take awhile for it to start working right again. Still, we're ready to see Keegan get some weight back on him and have more energy. Thank you for all your prayers and kindness so far. We are truly grateful.