It’s very strange to be treating an infection at home from the start. Besides the obvious life-saving stabilization that being admitted for the first few days of an infection brings, there is also some matters of business that get sorted out during the admission.
Instead, we are sorting them out at home. And Brian and I are playing the role of nurse and interns in this case.
See, a lot of the treatment of a line infection is in lab results. So you identify the bacteria and choose which antibiotic it is sensitive to. And then you monitor how Patrick’s body is metabolizing the antibiotic to make sure that it is within therapeutic levels. (Enough to kill the bugs, without causing harm to his body.) The rest of the hospital admission is sitting around trying to make sure that the nurses and doctors don’t mess up our good medical routine. And trying to keep Patrick from going completely crazy.
So, instead, we are home, without nurses and interns to watch out for. The 2nd day of treatment was eerily quiet and calm because Patrick was feeling so mellow from all the medicine. He just sat (or layed) on the stairs for most of the day. And I gave 3 doses of antibiotics.
But we do have to make sure that the correct labs are being drawn at the correct times. (Which is sometimes 6 a.m. and sometimes 11 p.m., and very rarely, right in the middle of the day.) And we have to make sure the medication stays exactly on schedule so the results will be acurate.
Amazingly, I’ve been able to convince all the nurses who have come to just let me draw the blood samples that they need. This is nice because I don’t have to worry about if they are treating his line gently enough, or if they’ll wake him, or if they made a mistake.. Because I’m the one doing all of it. But it’s a little bit strange to be doing all of it. (Please note, I don’t know what I’m doing and wouldn’t do this without nurse supervision. They tell me what I need to do, and exactly how. And then they put it in the proper tubes, get it to the lab, and follow up on the results.)
We have a lot of phone calls setting up nurse visits, going over lab results, adjusting medications, and scheduling deliveries of new medications.
And inbetween, things are a kind of quiet anarchy. Patrick is wiped out yet again by the benadryl pretreatment. He’s wired one minute, and crying in exhaustion the next. The medication schedule we’re on is good in that there are no middle of the night doses due. (I stay up till 11 p.m., then get up again at 6:30 a.m.). But every time he wakes up, I’m giving him another dose of Benadryl and turning on the antibiotic that makes his belly sick.
We still are very confused as to what we’re treating. For that one day, Patrick had me a little concerned and watchful. But he has never been really sick.
The blood cultures came back with one positive test for a strain of streptococcus A (not strep throat, just something in a similar family.) The first set of tests didn’t come up with a good antibiotic to treat it with. It was resistant to just about everything. And then, a few days later, the other side of his line grew a staph infection similar to the one we just finished treating.
Neither result was very conclusive, and a few days later, the cultures that were drawn again so far haven’t grown out any bacteria.
The lab is rerunning their tests to try to figure out how to treat the first bacteria that grew. And we’re debating whether or not the second one was an infection or a lab contaminant.
So maybe there’s no infection at all. Or maybe Patrick’s body and the use of ethanol locks killed off the initial infection. Or maybe he has a very serious, drug resistant infection. Or an infection that we aren’t able to kill without removing this line. We honestly don’t know at this point.
What we do know is that we can’t quite seem to get the levels of his antibiotic right, so we keep adjusting doses. Which means we keep waiting a day, and checking the levels again. Usually by sneaking into his room with a nurse in the middle of the night.
A strange nurse. Because through some freaky circumstance, the day Patrick got sick, his usual nurse got a call from her kids school saying they’d be diagnosed with whooping cough! They’re immunized! She’s a nurse! But she had to go into quarantine for 4 days with her family.
Thank goodness she still loves us to be consulting with me on the phone about all of this. And thank goodness for Patrick’s amazing GI who just includes us in the team.
He said to me the other day, “Sure, it’s possible that we just have false positive cultures. But your instinct said something was wrong. And we have to take that seriously.”
So yes, we’re sleep deprived. We’re a bit scattered trying to juggle logistics. And Patrick and I are both more than a little tired of the side effects of his treatment. And Brian’s been sick, to boot.
But we are incredibly grateful to be home and hoping that Monday morning (Or at least Tuesday) will bring answers and a clear treatment plan so we can move on to the funner things we have on the horizon.
Patrick Hoopes 