We don’t really know anything, yet, but I thought I’d update on what’s happened so far since it’ll likely be awhile before we really know anything for sure.
Being in the hospital (as the patient or as the parent of a patient) always feels like some kind of a time warp. It’s like the world shrinks until this becomes almost all there is, and I always lose track of time. It feels like I’ve been here for weeks, and like my initial surgery was months ago instead of three weeks ago.
I’ve been on IV antibiotics for three days now, and the drain has been in place for almost 36 hours (I had another surgery to place this drain yesterday morning.) I’m no longer running any fever, but that’s the only change anyone has seen. The drain has put out very little, which is baffling for everyone based on how large the abscess is. And the pain and cellulitis-affected tissues have not responded in any tangible ways.
Because of how little my body has responded to these very strong antibiotics, my doctor called for an ID (Infectious Diseases) consult today. I was going to ask her to do this, so I was greatly relieved when she told me this first thing this morning before I even got the chance to ask her. It makes it so much easier when we and our doctors are on the same page.
Scott and I met with an ID doctor this afternoon here in my hospital room, and we really liked him. I hadn’t realized how much I was feeling the burden of having to stay on top of things myself in order to be sure we were advocating for all of the right things. We are so used to medical pictures that aren’t clear-cut, and we’re used to sometimes having to fight for what we think is right. This is all even more exhausting when we don’t really know what we need to be asking for. As we were talking to the ID doctor this afternoon, I felt myself relax for the first time since all of this started, and I realized how stressed I’ve been feeling about trying to figure this out myself. I feel like they know what they’re doing and what to look out for, and I don’t have to feel like I have to be in charge anymore.
They want to make sure they aren’t dealing with MRSA, and they want to identify any other bacteria that could be causing the problems. The first step is to wait for all final culture results from the drain placement surgery yesterday. He expects those results all to be in sometime tomorrow. Since I’m no longer running any fevers after being on the IV abx here, he feels these meds are at least doing something, even if they aren’t what’s needed to resolve it completely. So he wants me to stay here on these meds while we wait for culture results, which I agree with in spite of how much I want to get home.
If any bacteria makes itself clearly known in the culture results, he said that will make it much easier to come up with a treatment plan. But they aren’t shaken by the possibility of not getting clear answers tomorrow from the culture. He said they will still start putting together a treatment plan even if they don’t get a definitive bacteria, and he wants it to be a plan that gets me home as soon as possible, even if I need to come home with a PICC line in place. Scott and I feel good about his plan at the moment. I want to go home, but I don’t want to do that prematurely and then have to come back.
Kathryn began showing signs of stress this afternoon, so we are really hoping we can get some pieces in place soon that will allow me to go home and finish healing. Please keep praying for her. I don’t know how we could cope at all if she began seizing again right now in the middle of everything else.
The other kids are doing pretty well, although the younger ones also began showing signs this afternoon that they are nearing their limit. One of our older daughters confirmed that one of the biggest reasons they are managing to hold all the little ones together right now is that meals have miraculously been provided each night since I left, and we learned today that there are meals coming again tomorrow night and Friday night, too. We truly have the most amazing friends in the world! We will never be able to thank everyone enough for the ways you have loved us through these last couple of years.
Last night was a bad night with lots of pain, and I had to take heavy pain meds twice during the night. I’ve been blessed to have the same amazing nurse every night that I’ve been here. Her name is Bunmi; she is Nigerian, has a very interesting story, and she has been a gift. She and I have a plan in place to deal with the pain again tonight if needed, so I’m going to try to sleep now. Goodnight from my little world here.