Written Wednesday, April 17, 2019:
Lilyan started running fever again just a couple of hours after my last post. Just like with her fever on Saturday night, it didn’t really knock her down like her previous fevers had done, and we were inclined to think that maybe they were just her body’s response to surgeries — Saturday night’s fever to her Friday surgery, and Monday evening’s fever to her Sunday surgery. Most of the doctors agreed with us that this was probable, so no one was overly worried about them. But things changed a bit yesterday.
We had just started to hear some whispers about possibly sending us home on Thursday if all went well in her surgery today (Wed). But very suddenly around 6:00 pm yesterday, her heart rate began to climb, and then her fever started going up. She ended up with a headache again and curled up in bed, feeling miserable. It was like we had backed up about five days, and it was so very disheartening. And worrisome.
She is still being treated with an antibiotic for the original organism found back on April 9. They identified two other organisms in her next surgery two days later, but one of these never grew anything in the culture and turned out not to be a big deal. The other is a pathogenic yeast (which means it can cause infection — and it has in her case), and it has turned out to be a much bigger concern. They are treating this with an anti-fungal medication. These organisms are fast-growing and really tough to fight.
Some of her doctors had already been to our room to talk to us earlier in the day, to help us gain a clearer picture of this new world we find ourselves in now. One of the things we are learning is that a wound infection is a big deal. A wound infection with metal hardware in your body at the site of the infection, is a whole different dimension. One of the biggest concerns about this is the possibility of the organism that is causing the infection attaching itself to the hardware. If this happens, it can form a film or a kind of barrier that allows it to seal itself off from any antibiotics or anti-fungals, making it almost impossible to fight the infection. This can become very serious very quickly, and if the infection can’t be gotten under control, it can become necessary to remove all of the hardware in order to clear up the infection and then try to start all over again with new hardware at a later date. And of course, the worst fear is that the infection will enter the bloodstream, which can result in death in 40-60% of cases.
So when she got so much sicker yesterday, there was immediate concern that this yeast might’ve started attaching to the hardware in Lilyan’s back. We were anxious for her surgery this morning so that we could, hopefully, get some answers.
There was good news and bad news. The good news was that there doesn’t seem to any thing attaching to her hardware at this time. Apparently, the surgeon should be able to see a kind of sliminess to the hardware if this is beginning to happen, and she didn’t see anything like this.
But there also wasn’t as much healing as she had hoped to see, and quite a bit of dead tissue and just general “yuckiness” in the wound again. They did a more aggressive cleaning out this morning and took more samples, but they couldn’t close her up yet with things looking like they are. These samples showed quite a bit more yeast in spite of the treatment she is getting, and we feel like all of this explains her steps backward yesterday.
So where does this leave us? That’s the big question.
Everyone agrees that we can, at some point, go home even with the wound VAC in place. They also placed her PICC line yesterday so that she can continue to get her IV antibiotic treatments at home. Her antifungal is an oral med. They want her to start by taking both of these for about a month, but they have warned us that sometimes it takes, weeks, months, and even years of medications to get kids through an infection like this where there is hardware involved.
But these fevers are worrisome, and the Infectious Disease doctors are especially concerned about letting her go home until they feel like they have them under better control. They will be back to talk to us again in the morning about where we should go from here. If she runs another fever this evening or tonight, they want to order blood cultures again.
Surgery is planned again for Monday, and this pattern is likely to continue about twice a week until things are healed enough to close her wound. So we will keep trying to take this one step at a time, while also continuing to pray that God will soon bring our family back together where we can all draw strength and comfort from each other as we face what we are beginning to understand is probably a very, very long road ahead of us.
A couple of pictures from today. Lilyan woke up this morning, not looking forward to surgery again, but she was excited to take her new Minnie Mouse with her this time. And she is definitely not as afraid as she used to be now that she has had so many of these shorter surgical procedures.
And late this afternoon, a package from a Sunday School class at our church was delivered to our room. Lilyan was visibly touched by this sweet, sweet gift. We are continually aware of just how blessed we are by such a loving support system. Thank you all.