04 Dec Update
Keegan’s white count got even lower yesterday, specifically his neutrophil (baby white cells) was extremely low. Normal ANC (absolute neutrophil count) is anything over 1500 units per deciliter of blood. Severe neutropenia is considered a count of under 500. Keegan’s was 70. Even though the transplant team was freaking out, hem/onc wanted to wait until he became symptomatic, i.e. had an infection from not being able to fight it. Yesterday afternoon he had a temperature of 100.8, so hem/onc recommended giving him GCSF (granulocyte-colony stimulating factor) to help boost his white count to fend off an infection. In the middle of night, his temp went up to 102.4, so we drew cultures from his port and another vein. So far, those cultures are negative. However, he still is having high temps, chills, high heartrate, blood pressure, and respiratory rate. Every 6 hours when the tylenol wears off, he spikes back up to 102 or higher. We started him on an antibiotic as insurance for his heart, and he will stay on the GCSF until he is fever free for 24 hours and negative cultures for 48 hours. He’s sleeping a lot and just feels rather puny.
We met with hem/onc today. They are still waiting on a few tests, but the possible things it could be are all treated the same way – with GCSF. So, as long as he beats this bout of fever, he’s cleared by hem/onc to go home. GI wants to wait until Saturday to see if the pancreatic enzymes work. If they do, we’ll go up on his volume of feeds over the weekend to make sure he handles it ok. I guess we’ll cross that bridge when we get there if the enzymes don’t start working.
Please, please continue to keep Keegan in your prayers. We are getting pretty tired of this rollercoaster ride. We just want Keegan to stabilize, especially with his GI issues. His blood will be a constant battle during his life, especially if any of the remaining tests come back positive. It’s an identifiable problem though. We desperately need to find a way to help Keegan process his food better and get him off or at least on much less of the TPN. My mind is swimming right now, so I can’t really even give you any prayer focus right now. It’s time to get the Bug ready for bed. Tranpslant coordinator Stephanie just came in to say hi. Looks like another little girl is getting her miracle tonight. She is 7 days older than Keegan, and she has been waiting awhile for her heart. If there’s one thing we can certainly ask for, it is for a successful transplant and easy recovery for her. Thanks so much!
New photos are up! Enjoy!