16 Dec Update
Another pretty good day for Keegan, and we are hoping that we’re not imagining that light at the end of the tunnel! The transplant team is at least confident enough to start getting his home healthcare lined up. Then we just have to pull the proverbial trigger when the green light comes on. Remember, we don’t say the “h word” until we’re actually in the car!
The first bit of good news is that the last test for bone marrow failure came back negative. Yeah! We’re still waiting on the autoimmune bloodwork to come back, don’t have a date on when to expect that yet. He continues to be neutropenic but not low enough to start the GCSF back up. His red counts are hanging out just above the transfusion treshold too. He did very well in physical therapy today, even taking his hands off of one table to cruise to the next (instead of sitting down and crawling over). One more fun tidbit – Keegan’s started clapping!! About 10 months behind the curve, but we’ll take it! He makes me laugh so hard every time he does it.
Keegan will start his last dose of the antibiotic in about 20 minutes. Tomorrow, we’ll run blood cultures (48 hour wait after) to be sure the staph is gone. Yesterday, he had two really good poops in the morning (something you wanted to know, right?), but he hasn’t had any like that since then. This afternoon, we increased the calories in his formula to 24kcal/oz. He’s only been on it for about an hour, but so far, so good. Unfortunately, we were once again victims of the miscommunication between transplant and GI. The nurse practitioner authorized a decrease to 12 hours a day of TPN last night. By the time GI came by, they had already cut his TPN off for the day. GI wasn’t happy that transplant had deviated from the plan, but they said there was no better time to do a trial by fire then while we’re still here. We’ll see how his weight is tomorrow. The problem with cutting his TPN too soon is that he is still sensitive to his formula increases. Oh well. Like GI said yesterday, it’s a trend, not a day by day.
Keegan had his pentamadine (breathing) treatment today, and he should have his next synagis injection this week too. Wednesday, he’ll have an EKG and echo to make sure his heart is ok. He continues to have a very high resting heart rate (167 this morning). Dr. Fixler keeps saying “we’re watching it”, but sometimes that’s just not what we want to hear. Keegan’s blood pressure is still a bit high, but so far, they’re just playing with his blood pressure medication a bit.
Please continue to keep Nate and Avery in your prayers. Nate did not have a good day today; he’s fighting low blood pressure and a fever. Miss Avery is still battling bad labwork and a great deal of discomfort with her tummyaches and constipation. Please pray for God to send his healing hand to comfort and protect these too amazing young fighters. Thank you so much! More later.