We are home!!! And, as if life knew I needed my spirits lifted, it is a cloudy, rainy, Fall-like day. I have my spice candles burning, nowhere we have to be, and kids snuggled in blankets. Perfect!!
The pain medication is doing its thing and the fluids Liz got at the hospital helped perk her up, for sure. The docs decided to give her an extra bolus before we left and she was up to eating something after that.
She was discharged with orders to return if she needs more fluids or the pain isn't manageable. The doctors are hoping she needs to get over this "hump" and allow the new medication to work on the CDifficile. How many times have I heard that before?!
I do understand though that there is nothing more to be done right now for the CDiff. We are literally at a stand-still while we wait to know if this is the drug that will finally rid the toxin. The ID doc here is going to speak with UCLA to come up with an offical plan as to what happens next if this drug doesn't work. We'll either try the brand-new drug that has not been tested on children or she'll have the transplant. In any case, it needs to be decided now as the transplant preparation is a huge process.
The doctors spoke to me last night about what will have to happen if she isn't taking in enough fluids or nutrition, or if her stomach can't handle food. She is having pain and nausea after eating;a result of her colon and intestines being so inflamed and infection-filled because of the CDiff.... food exasurbates this. If she is unable to eat, she will need to start on TPN - total parenteral nutrition- nutrition delivered through an iv or catheter. She isn't a good candidate for NG feeding (through a tube down her nose, into the stomach) because that would involve her having to process the nutrition. We DO NOT want to start TPN. That is a road that is hard to get off and comes with its own risks. Even with all her GI issues since birth, she has never had to be on TPN, I don't want to start now. Still, it had to be discussed.
This "hump" is part of the infection progressing. I think she also did too much with going to school full-day for two days. Her body is fighting hard against the CDiff, she also has had the respiratory virus going on for a week which would make any of us tired, and she is anemic. All that, plus not drinking enough, added up to feeling pretty bad and needing the hospital. As soon as the pediatrician saw her yesterday in her office she said "You guys are going to the ER!" I probably should have taken her straight there, but denial and stubbornness can cloud my decisions sometimes.
I don't know about school for her next week. She is so happy there and it is important for her to be "normal" in all ways possible, while keeping up with her studies. I think we will see if she can handle just a couple hours and go from there.
Anyway, we are home on this ugly, beautiful overcast day. Nowhere we need to go...nowhere I'd rather be.
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