21 Mar Update
Just a quick update. Keegan’s been handling the feeds SO well. We are just amazed. I told our admitting doctor that I was almost embarrassed at how well it went, considering we’d been so insistent on the fact that he could never handle the calories before now. Again, he reassured me that they were well aware they came in on the tail end of things and that they truly believe the oral antibiotic is the ticket in this neonate heart transplant patients that develop intestinal problems. Also, he thinks Keegan will continue to do better with the Elecare formula, as it is so much easier to digest. He is now at his full volume and calorie goals of formula g-tube feeds, even with up to 30ml/hr overnight! He hasn’t thrown up in almost a month! Floored, I’m just floored.
All that being said, tonight he will not be getting his TPN for the first time intentionally since October. We will stop the TPN for the foreseeable future and see how he does. I’m concerned about this because even with his TPN, he hasn’t been steadily gaining weight. In fact, he’s not gained any weight other than slight daily fluctuations since the beginning of March. We’ll see how he does over the weekend, and if he maintains his weight, we’ll likely pull his PICC line out after his last dose of IV antibiotics on Monday. We could foreseeably be discharged on Tuesday to our “Bostonian home” for about a month. Again, if he struggles in the least bit with his weight, hydration, or nutrient levels, we’ll discuss the next step to take, whether it’s putting a port back in for TPN or changing his tube to be fed directly into his intestines.
Please continue to pray that Keegan does well over the next few days without TPN and that our stay in Boston ends in a nice little vacation before coming home for good. Gray arrived back in Boston this afternoon, and Keegan was so happy to see him. My sister, Alex, left late Thursday afternoon, and we had a great time with her also. It was so nice to have my family here while Keegan had several anesthetized procedures and while we were stuck in a hospital room far away from home. Thanks so much, Alex!
Check out the few new pics we posted today, sorry there aren’t more. There’s also a new video of Aunt Alex and Keegan having fun at the hospital! I’ll steal a line from a friend of ours (her daughter is also inpatient now, so please keep little Summer in your prayers; she is a bone marrow transplant survivor and is fighting her first virus post-transplant)…all of the COOL people will check out Keegan’s pictures and leave him fun comments there or on this guestbook to read later! 😉 Have a great rest of your weekend!