Since I’m used to creating and giving status reports at work, I suppose it seems oddly natural to try to summarize Adela’s situation to get everyone up to speed, whether you’ve been following from the beginning of her latest saga or you’re just joining in. In essence, it’s more a combination of a status report and an FAQ (Frequently Asked Questions).
What’s the diagnosis?
Unknown. We know her intestines are inflamed and damaged but we don’t know why.
What’s the prognosis?
Unknown. If it’s an autoimmune disease like Crone’s, it won’t ever go away, it can just be managed. We won’t really know until we get a diagnosis.
What’s the treatment?
For the first two weeks here (before we knew about the intestinal inflammation), we simply managed the fever and she received IV fluids to keep from getting dehydrated.
After the intestinal inflammation was discovered, she had several days of intestinal rest while receiving only TPN. She was put on several antibiotics and an antifungal to mitigate the risk of infection. After several days, she started receiving Elecare at a very low rate. Since then, the rate and caloric density of her formula has increased and is now at the maximum target. At this point, we can only wait and see how her nutrition improves.
Just this week she started receiving steroids to try to reduce the intestinal inflammation.
What medicines is she on right now and why?
Two antibiotics and one antifungal to reduce the risk of a bacteria or fungus in the intestines moving to the bloodstream.
Steroids to reduce the inflammation in her intestines.
How much longer will she be in the hospital?
The last estimate we received was a minimum of six weeks (from Tuesday 10/12) for her to get to a nutritionally sufficient enough state to return home. This time frame will change depending on her progress, so we don’t have a definite answer.
How is she feeling and what’s she doing?
For the most part, she’s feeling much better than when we came in. She is more alert, happy, and energetic with each passing day. She spends most of her time reading and playing with Mommy, Daddy, and both sets of grandparents who visit regularly. She has been watching more TV and movies than we usually allow, but we decided now’s not the time to worry about such things. She has not felt like moving around on her own, however we are getting her up to exercise her legs some since she’s been in bed for a few weeks.