07 Dec Update
Good and bad news today. Good first … Keegan weighs 18 pounds exactly today!!! TPN and lipids are beautiful things. Keegan’s gaining despite cutting back to help his liver. Thursday, he weighed what he did when he was admitted on October 14th, and now he is past that a little. Also, his white blood cell count is 6.4, and his ANC is 1700. That is the highest he has ever been in all of those numbers. For the first time, he is officially not neutropenic. YEAH!! The GCSF is finally working, and that is great news considering the following bad news. The staph has grown in his blood cultures from the peripheral vein (not his port), which means the infection has spread through his blood stream. Dr. Fixler contacted Infectious Disease immediately. They have advised to stay the course of the antibiotics he is currently on, and we drew a new set of cultures today. ID was hopeful that the infection can still be treated with the antibiotics without having to pull his port. It is encouraging that it took almost 48 full hours for the cultures to grow, maybe indicating the infection is not too angry. ID thought that with the last few days of antibiotics, today’s cultures may even be negative. Still, that takes 48 hours at least. He will need 10 to 14 days of antibiotics, 24 hours of no fever (which he’s already met, last was Thursday night), and two negative cultures from separate days (48 hours each). Needless to say, we’re not going anywhere soon. Hem/onc will likely leave him on the GCSF (white blood cell growth factor) a little longer now too as an added precaution. His blood pressure and heartrate are still high, but we’re hoping that is a reaction to the infection.
Keegan is still feeling the effects of the infection and bone pain. He slept well from 3am to 9am, which he desperately needed. Big Daddy came to play and watch Keegan while I got dressed, and Keegan had a grand time with him as always. We even gave Keegan a bath, new Christmas pjs, and sank a new ng tube to give his poor, little cheek a break. He still can only go 2 or 3 hours without a nap, and right as he was crashing, some of the characters from the NM Adolphus Children’s Christmas Parade came to the floor. The entire Bearenstein Bears family came into the room. Unfortunately, I didn’t have the camera on me, but Keegan wasn’t too happy to see them anyway. He gave one of them a high five, but that was about it. At least he let them in the room. Yesterday, some of his favorite nurses who were other characters in the parade came by the room, but he was feeling too puny to see them. He gave Ms. Pam and KK some good smiles this afternoon and showed them his new little trick – “give me some skin”. A variation on a high-five, but he thinks it’s hysterical.
This afternoon, we took him outside to get some fresh air. Workers are checking all the lights and decorating the big tree in the circle for the grand lighting ceremony Monday night. I really hope he’s feeling well enough to meet Santa on Monday! We tried to take pictures by one of the smaller trees in the courtyard, but Keegan wasn’t as cooperative as usual. He played for about five minutes on the play area before needing to head back to his room. He is starting to stand on his own for a few seconds at a time before sitting. The physical therapists have been very impressed with how far he’s come since they started working with him. They think he’s just about strong enough to be able to walk once he decides he is ready to try. Mind over matter there. Gray put the Christmas tree up at home this morning. Thanks in advance to Mamie and Ms. Denise for decorating the house for us. How nice it will be to have the tree up when we get home for Christmas (hint, hint – positive thoughts, positive thoughts)!!!
Please keep praying that Keegan will be able to fight this infection. He will need all the help he can get considering his defenses are so low. We could not be more thankful for the continued support of each of you and all of those to whom you’ve spread Keegan’s story. We love to hear about people he’s never met praying for him and how far his prayer network goes. Thank you so, so much! Have a wonderful weekend.