06 Nov Update
Keegan is still in good spirits. He even went to the playroom with Mamie this morning while I was at work to make paper turkeys and play with the clowns. He continues to have a low-grade fever, diarrhea, stomach cramping, and plenty of funky stuff going on with his blood (very medically accurate, I know). We’ve sent even more bloodwork out for testing, and we’ve asked for a consult from Infectious Disease. It sounds like there might be two things at work here – some type of bone marrow issue and an unknown infection of some sort. Keegan is still being followed by the transplant team, GI, hem/onc, and now ID until this is figured out. His blood counts are already starting to go down, less than 7 days after getting two units of blood. Of course, it’s not helping his anemia that we’re drawing so much blood for testing. Tomorrow, we don’t have much planned as far as I know. Just waiting for test results, watching Keegan’s GI system, blood pressure, fever, etc.
We had to sink his ng tube again today and reaccess his port (has to be done every 7 days). That just means we took the needle out of the port, clean it up, and put a new one and new dressing in. He did really well during the process, but another problem cropped up in true Keegan style. Luckily, I left him in just a diaper after the port change for about 30 minutes until I tried to put a new ng tube in. While Gray and I were eating our dinner during that break, Keegan’s chest under the port began to swell up with fluid. It would have been really bad if we had not caught it when we did. I rarely leave him in just a diaper, so God was definitely watching over Keegan tonight. Basically, the nurse that tried to reaccess it missed the port, so the TPN was just pumping into his skin and the area underneath it. If you looked at him from the side, you couldn’t see his neck due to the swelling. We called the charge nurse from the oncology floor to come take a look. She pulled the needle out, and fluid just oozed out. They pushed as much out as possible, numbed the area with lidocaine, and let him rest and drain for about 10 minutes. The oncology nurse and the charge nurse from our floor are amazing. They could feel the port underneath and with a little bit of maneuvering were able to get it going again. We had to at least get a needle in there to lock it with heparin. The swelling has come down a bit, but now we have to watch him closely overnight for what’s called “calcium burn”. The skin doesn’t like contact with calcium (one mineral in his TPN), and it can cause necrosis of the skin if left untreated. There is no danger of the fluid moving to his lungs or heart. It will all be absorbed eventually by his skin.
Keegan is the strongest, most awe-inspiring individual I have ever known. I know I’m a bit biased, but I know that any of us would have crumbled in broken spirits after all he has been through lately. He cries just like any baby would, and then he moves on as if it never happened. Accessing his port tonight while he was swollen was so much worse than an IV attempt, but he still gave the nurses hi-fives and bye-bye waves when they were done. I wonder how much one little body can take. Still, he proves me wrong every day with his endless smiles. I know he is nowhere near teaching us all he can about strength, grace, love, hope, and God’s mercy. I thank Him every day for the honor of calling Keegan my son. Thank you as always for your prayers. We promise to keep you as updated as possible as we learn more.