Home Not So Sweet Second Home

It's been a busy week in the world of Jaisal. We were discharged from the hospital on Tuesday afternoon. The team's decision was to not make any changes to Jaisal's medication routine. Kirk and I were very skeptical of this approach. We were fairly certain that Jaisal has cholangitis (a liver infection) and that it is being caused by a bacteria that is resistant to the antibiotics that Jaisal has been on since July. And if we were right, we'd be back at the hospital in two days.

Well we were wrong, we were back at the hospital 24 hours later with another fever. So far there is no apparent cause for the fever, and the team is perplexed. I just finished talking to Dr. A and the proposed plan is kind of crazy in my opinion, but probably makes sense. Basically, we don't know for sure why Jaisal is getting fevers and we could throw different meds at him (like they do upon admission), but even that seems to stop the fevers, it could create a whole host of other problems. One potential cause for the fevers - which has never been discussed before - is the antibiotic itself. I guess it isn't unheard of for people who are on this particular antibiotic to get drug-induced fevers, so the crazy plan is to stop all antibiotics and see what happens.

Best case scenario, the fevers were caused by the meds and within 48 hours the fevers stop and 72 hours after that we are discharged. The plan would then be to keep Jaisal off all antibiotics until transplant, which of course could lead to another episode of cholangitis, which is what we were trying to avoid in the first place, but we'll deal with that if it arises.

What also could happen is that Jaisal spikes a fever, we try to keep him comfortable with Tylenol, but the infection that is causing the fever spreads to his blood and he becomes septic. Septic Jaisal is scary, and requires lots of medical intervention and usually some time in the PICU. I am really nervous about this possibility.

Also, while we wait to see how this plays out, any time Jaisal gets a fever, the nurses will take blood cultures to see if we can identify a bacterial cause for the fevers and then start a sensitive treatment. All the cultures thus far have been negative, but there is only a 30% chance that a culture will grow something even with a bacterial infection and since he's been on long-term antibiotics that reduces the odds of any culture growing, even if it is a different bug than one treated by the antibiotic. Dr. A thinks culturing during a fever will give us the best chance at identifying what is going on if it is cholangitis.

Last but not least, they are checking for certain viral causes of the fever, namely EBV and GMV. These are community-acquired viruses that can be quite problematic post-transplant, so if he gets one or both before transplant it's going to make his post-transplant treatment a bit trickier.

With this plan of action, we're in the hospital for the weekend and maybe longer. We're not so thrilled about that, but at least I get extra snuggle time with Jaisal. We frequently take naps together on the sleeper chairs, something we never do at home.

If you're in the area, feel free to come visit!