05 Dec Update
Yesterday the blood cultures from Keegan’s port site grew a staph bacteria. We’ve continued him on the high-powered antibiotic until we determine the sensitivity of the bacteria to a particular drug. The staph is a common one that most of us carry on our skin and mouths, not the big scary MSRA type. The transplant team thinks it may have infiltrated his port when he chewed on the fitting during last Saturday night’s bloodbath. Hem/onc does not rush to take an infected port out until it proves drug resistant or spreads to the rest of his blood. So far the cultures from a peripherial vein have not grown the same bacteria, which is a good sign. Hem/onc did say that he must have two cultures be negative for at least 48 hours before they would clear him to go home, and he will likely stay on the GCSF (white blood cell growth factor) a little longer than he otherwise would have. We had a scheduled reaccess of his port yesterday, and when we took the needle out, the site was kinda crusty and irritated. It wasn’t pussing though, so hem/onc thought it best to reaccess so the antibiotic would be delivered straight into the site. The GCSF has “raised the floor” of his white cells (these are the cells that fight infections). He is now moderately neutropenic (baby cells, up to 800 from 70, normal is over 1500), but his white count (mature cells, normal response to infection would be 15-20 or higher) hasn’t gone above 3.5. Giving the GCSF gives him some extra fight though, so we’re hoping it combined with the antibiotics will be enough to fight off the staph. He also
Another issue cropped up with his labs yesterday. His liver enzymes were insanely high. GI had a sonogram done of his liver and gallbladder done late last night to make sure that he didn’t have any build-up there. He didn’t, so we’ll tweak his TPN and lipids again to give his liver more of a break. He still doesn’t seem to be responding well to the enzymes, and tomorrow was GI’s deadline for that. Now, they’ve said all bets are off when he’s on antibiotics. We’re going to forge ahead with trying to increase his volume and see how he does. We’ll also increase the amount of enzymes he gets each da. With his liver starting to have problems with the TPN, it’s all the more important to get him to absorb more of his food.
Overall, he’s in a slightly better mood today. He hasn’t had a fever since last night (101.4). He actually stayed up for about 3.5 hours before his morning nap, so that was a vast improvement. He is still more irritable than normal, but he put on his best happy face when Ms. Abby, our neighbor and gf Lainey’s mom, came by for a visit. He slept a little better for Gray last night, but he’s still pretty uncomfortable when he sleeps. The GCSF can cause bone pain and a little fatigue, so that’s probably a big part of it, especially combined with the infection. He was up way too late last night with the sonogram, the antibiotics, and the reaccess issues. Hopefully, tonight will be better.
We appreciate your prayers for all of us. We’re trying to stay positive, but it gets harder as the weeks go on. We’ll update again over the weekend. Hope you have a great one.