Posted by Becky
The good news is, the doripenem seems to be getting the Klebsiella under control. Leif's blood cultures from January 1 are still negative and he hasn't had an "official" fever (over 100 F or 38 C) in a day. He says that except for the places he hurts, he's feeling good - no feverishness or general crappiness.
The exception is the issue, though. The spot that the doctors started checking out in earnest yesterday still hurts, and quite a few places where Leif was feeling muscle cramp-like pain yesterday have popped up in similar-looking and similarly excruciating nodules. Those plus the soreness on his butt - worse since they drew the sample out of it a couple of days ago - make it hard for Leif to move, change position, sit, stand, etc. He has been getting around as much as possible anyway, since it's so important to maintain his conditioning, take deep breaths to keep his lungs clear, etc. He's been powerfully motivated by a remote-controlled helicopter that Karen and Beth sent him earlier this week. He took it out to the visitor's room this morning and flew it around a lot, charged the battery up and flew it around the room again this evening.
The Infectious Disease doctor thinks that the nodules on his shoulder and leg feel like the same thing. She's not convinced it is the superficial bacterial infection that the dermatology guys think it is. This kind of nodular appearance can indicate a fungal infection, and it seems to be spreading. She feels like we have some time to get it under control since Leif's fevers are reducing, but of course she doesn't want to potentially miss something that could be getting worse. She noted that a bloodstream infection is much more serious, so she is glad to get the Klebsiella under control. Fungal skin infections would normally be associated with a scratch or something, but there could have been something dormant in his skin from an earlier exposure, that is only causing a problem now that his immune system is suppressed. She asked about Leif's potential for fungal exposure - before he got sick, was he a gardener, did he dig in the dirt, spend time in the ocean, get exposed to moldy areas or construction, anything like that? Um, yes, all of the above and then some. If there was a fungus in his blood, it would have turned up in the blood cultures already. She said she'd talk to the hematology/oncology team (Leif's main doctors) about her thoughts.
So this afternoon, the Surgery team did a biopsy of Leif's shoulder site. They loaded him up on platelets before and during the biopsy. They also loaded him up on pain killers, but it was still an extremely painful procedure for him on top of all the other pain he was already feeling. I had gone to the post office, but Leif's nurse for today brought him some more painkillers while he was down there, and stayed with him through the procedure. When he got back, a team of nurses and doctors put together a quick plan for treating his pain. They gave him a Patient-Controlled Analgesia (PCA) pump with a continuous flow of morphine, plus extra morphine dosed out to him when he presses a button. After an hour when his pain wasn't controlled, they increased his continuous dose and the size of his extra doses. Part of the difficulty is that his pain was inconsistent - it subsided when he was still, but was intense when he moved at all. So the information the nurses and doctors were getting about how close he was to his pain limit was not accurate. Now the biopsy site is extra painful, too, and he has no comfortable position to sleep in.
They have changed his antifungal medicine from fluconazole to voriconazole, a stronger antifungal that Leif has had before. I am hopeful that tomorrow they'll start getting results from the biopsy and will be able to target the treatment even more if appropriate.
It's been about an hour and a half since they increased the dosing in his PCA, and that is not getting ahead of the pain, so the doctor just prescribed switching from morphine to Dilaudid, which is a stronger pain medication.
Please send good thoughts Leif's way; this has been a really tough couple of days for him. He's still been conscientious about doing all his self-care activities; mouth rinses, dental care, sitz baths, meals, and as much physical activity as he can stand.
The good news is, the doripenem seems to be getting the Klebsiella under control. Leif's blood cultures from January 1 are still negative and he hasn't had an "official" fever (over 100 F or 38 C) in a day. He says that except for the places he hurts, he's feeling good - no feverishness or general crappiness.
The exception is the issue, though. The spot that the doctors started checking out in earnest yesterday still hurts, and quite a few places where Leif was feeling muscle cramp-like pain yesterday have popped up in similar-looking and similarly excruciating nodules. Those plus the soreness on his butt - worse since they drew the sample out of it a couple of days ago - make it hard for Leif to move, change position, sit, stand, etc. He has been getting around as much as possible anyway, since it's so important to maintain his conditioning, take deep breaths to keep his lungs clear, etc. He's been powerfully motivated by a remote-controlled helicopter that Karen and Beth sent him earlier this week. He took it out to the visitor's room this morning and flew it around a lot, charged the battery up and flew it around the room again this evening.
The Infectious Disease doctor thinks that the nodules on his shoulder and leg feel like the same thing. She's not convinced it is the superficial bacterial infection that the dermatology guys think it is. This kind of nodular appearance can indicate a fungal infection, and it seems to be spreading. She feels like we have some time to get it under control since Leif's fevers are reducing, but of course she doesn't want to potentially miss something that could be getting worse. She noted that a bloodstream infection is much more serious, so she is glad to get the Klebsiella under control. Fungal skin infections would normally be associated with a scratch or something, but there could have been something dormant in his skin from an earlier exposure, that is only causing a problem now that his immune system is suppressed. She asked about Leif's potential for fungal exposure - before he got sick, was he a gardener, did he dig in the dirt, spend time in the ocean, get exposed to moldy areas or construction, anything like that? Um, yes, all of the above and then some. If there was a fungus in his blood, it would have turned up in the blood cultures already. She said she'd talk to the hematology/oncology team (Leif's main doctors) about her thoughts.
So this afternoon, the Surgery team did a biopsy of Leif's shoulder site. They loaded him up on platelets before and during the biopsy. They also loaded him up on pain killers, but it was still an extremely painful procedure for him on top of all the other pain he was already feeling. I had gone to the post office, but Leif's nurse for today brought him some more painkillers while he was down there, and stayed with him through the procedure. When he got back, a team of nurses and doctors put together a quick plan for treating his pain. They gave him a Patient-Controlled Analgesia (PCA) pump with a continuous flow of morphine, plus extra morphine dosed out to him when he presses a button. After an hour when his pain wasn't controlled, they increased his continuous dose and the size of his extra doses. Part of the difficulty is that his pain was inconsistent - it subsided when he was still, but was intense when he moved at all. So the information the nurses and doctors were getting about how close he was to his pain limit was not accurate. Now the biopsy site is extra painful, too, and he has no comfortable position to sleep in.
They have changed his antifungal medicine from fluconazole to voriconazole, a stronger antifungal that Leif has had before. I am hopeful that tomorrow they'll start getting results from the biopsy and will be able to target the treatment even more if appropriate.
It's been about an hour and a half since they increased the dosing in his PCA, and that is not getting ahead of the pain, so the doctor just prescribed switching from morphine to Dilaudid, which is a stronger pain medication.
Please send good thoughts Leif's way; this has been a really tough couple of days for him. He's still been conscientious about doing all his self-care activities; mouth rinses, dental care, sitz baths, meals, and as much physical activity as he can stand.
Sending all my thoughts for less pain and the disappearance of those nodules fast. Enough already, hope you are feeling better. love -- Wendy
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