Overdue update here. After being on the IV antibiotic and the oral antibiotic for a couple days, Rachel was feeling really awful. Really nauseous, headaches, her back hurt, pain meds weren’t helping. We’d been told that all of these were side effects (yes, even the pain meds not being effective) of the oral antibiotic that she was on (Rifampin) and that some people just can’t tolerate it. The doctor took her off that one and just left her on the IV nafcillin (penicillin variant.) Then she started getting itchy and had little bumps that would come and go. Her blood tests indicated that she was indeed having an allergic reaction (eosinophils were rising), but it wasn’t all that bad and there aren’t very many antibiotics that treat her staph infection so they kept her on it, just keeping an eye on her lab tests. Then she started needing Imodium to prevent having to go to the bathroom 7+ times a day. And was still somewhat nauseous.

Then on Tuesday, July 10, Rachel started having fluid leaking out from her surgical dressing. Given what had happened last month, we were all freaking out about this. They’d told us not to touch the dressing and that it was to stay on until her post-op appointment on 7/13, so we couldn’t tell where it was draining from and just had to keep patching the areas of the dressing where it was leaking and hope that it was only draining from where the drain tube came out and not from the incision itself.

We went to Boston on Friday the 13th, seeing both the infectious disease doctor as well as the surgeon’s nurse practitioner for the surgical follow-up appointment. Good news on the incision side, the fluid was only leaking from where the drain tube was; the incision itself had healed. The NP removed her stitches and the drain and one of the residents put a couple more stitches over the hole where the drain tube had been.

On the infection side, however, not such good news. The eosinophils were still elevated, even though she’d been less itchy and hadn’t really seen any more bumps. The doctor said her white count was dropping too much, which can be caused by the nafcillin, so he started discussing other antibiotic options – and there were only two options, both of which need to be given every 8 hours, which would have been difficult to handle, logistically (the nafcillin is every 4 hours normally, but her home infusion pump puts it out at a slow continuous rate so we only have to change the bag once a day.) We were really worried about this and then the doctor notices that the nurse had mixed up the numbers when she entered the lab results into the system and her white counts are actually normal, so we’re all relieved and think we’re all set. We move on to the NP appointment, which was actually after the infectious disease doctor appointment. While we’re at the NP’s office (which took FOREVER, I might add, as she was running behind – we had to wait 2 hours just to get in to see her), I got a call from the infectious disease doc. He had checked on her cultures that the lab had been continuing to grow since they took the cultures during surgery. Back during surgery they took 3 cultures. All 3 showed a staph infection. One of them showed granulicatella adiacens (nutritionally variant streptococcus – whatever that is.) Since the other two cultures didn’t show that bacteria, the doctors worked under the assumption that it wasn’t really there, that it was a false positive or cross-contamination or something. When the doctor checked the cultures again when we were with the NP, one of the other two samples showed the granulicatella adiacens. Guess what antibiotic doesn’t treat those? Yeah that’s right, nafcillin doesn’t – and hardly any others treat it either. Those two antibiotics that he was discussing switching her to earlier in the day – yeah those are really the only two options. Vancomycin (used to treat MRSA, among other things) and meropenem, which I’d never heard of before. Meropenem has fewer side effects, so he wanted to try that one first, but we needed to set up a test dose and it was too late in the day by then to do it in Boston so while we were stressing about how to get this set up in Maine, I got another call from the infectious disease doctor’s nurse saying that the company where we get her antibiotics and supplies has their own nurses who will come and do the first dose at your house, so we got that set up for Monday, July 16. The nurse showed up with scary EpiPens and everything, but Rachel didn’t have any allergic reactions and it went fine. Bonus – they’re able to program the pump to give the dose every 8 hours (giving her tiny amounts in between to keep the line open) so we still only need to change the bag once a day.

After a couple days of this antibiotic, Rachel’s feeling pretty nauseous and tired, but since the only other antibiotic option seems like it has even worse side effects, she’s suffering through it. And since the granulicatella adiacens had essentially not been treated all this time, she needs to be on IV antibiotics for a couple extra weeks. “Ideally until August 22” instead of August 8, is what the doctor said, but the nurse also said for us to schedule our needed post-op with the surgeon and they’d try to work around that appointment. The surgeon isn’t in the week of August 22 so I had to make the appointment August 13; we’re waiting to hear back from the other doctor’s nurse to see if that’s long enough on the meropenem or if we’ll have to still wait until the following week and make 2 trips to Boston (and Rachel suffer through that additional 9 days of IV and nausea.) He had also mentioned Rachel needing to take an oral antibiotic for a while (other than the rifampin) but didn’t seem definite on which one or for how long or even if it was definite, so we’re waiting on that as well.

Have I mentioned her college move-in date is August 31?? So much for summer…