Well it’s been a while. I wish I could say that that was just because things have been going great and we’ve been busy having fun, but no such luck. So we got home from Evie’s 3.5 week hospital stay in November and she had a couple weeks where she did really well, but then she started to struggle again. For a week she was having low grade fevers and then began vomiting. We went in locally for bloodwork to make sure she wasn’t developing another blood infection, but that came back normal.
Christmas Day we spent packing up our van and debating if we should drive through the night to Cincinnati. We decided to wait and instead drove to my parents’ house in Indiana so we could monitor Evie in a location a bit closer to Cincinnati. Eventually she got bad enough that we made the drive to the hospital and she was admitted.
Even though she was exhibiting symptoms of the recurrent intussusceptions, an ultrasound showed her colon was inflamed and a stool sample revealed Cdiff as the culprit. Cdiff is a bacteria that likes to cause problems after someone has had antibiotics (the antibiotics kill off the bad AND good bacteria in your gut and Cdiff likes to take over when that happens). It’s a nasty bug and is highly contagious. We started a new antibiotic and worked to get her back to full feeds once she started feeling a bit better.
We came home a little after a week and hoped she would continue to improve. Unfortunately, she didn’t, so we discontinued the milder antibiotic she was on and started up a stronger one. She’s improved since then and we’ve finally got her back at full feeds and gaining weight.
Now a week into that antibiotic and she’s starting to exhibit a few concerning symptoms. We’re hoping that it is simply the antibiotic working as the bacteria fights back, but it’s hard to know right now.
So that’s where we’re at.
I apologize for not updating during all of that. I just couldn’t bring myself to type it out one.more.time. This last hospital stay just sucked the life out of me and I’m still trying to get back my energy and optimism. The bowel issues have us living on edge constantly. We know that at any moment, things could get very very bad and it’s hard to relax with that hanging over us. With how things stand right now, either her small intestine will heal itself or things will get bad enough that she will become septic again, her bowel will perforate, or she will have an intussusception that locks for a long period of time. All of those are scary possibilities.
The last 3.5 years with Evie have certainly been hard, but the last 6 months dealing with the recurrent intussusceptions has been a whole new level of exhausting and draining. We’re just scared of losing our little girl. I want to enjoy all of her wonderfulness instead of always swallowing back the lump in my throat when I think of how desperately I would miss her.
Please pray that we can get the Cdiff resolved and her gut goes on to heal from the damage from the intussusceptions. Thanks everyone.
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