Yup. Back to the Inn.
Ellie's 'numbers" (fluid in, ostomy, out and urine out) have continued to be screwy and today we had the feeling that no matter how much we supplemented her evening TPN infusion with saline during the day, she just wasn't catching up to overcome the huge amounts that were coming out of her ostomy. Yesterday for example her urine total was less than half of what her ostomy total was. Urine is good ostomy is bad. If it were flipped we would be very happy but lots of ostomy output leads to dehydration.
To compound this concern Ellie finally started acting, funny today. Not quite sick or sickly, but funny. She made it about three hours this morning before she got a zoned out look around 10:30 and spent the rest of the morning on the couch watching Kipper.
We made some calls when she started acting funny and by 2 this afternoon we were in the car headed east. By 4 we had our marching orders and were back on the 10th floor getting settled for our stay.
By this point she had almost 500 ml of fluid and was back to giggling and making monkey noises while she swung from the bars on the top of the 'cant-get-out' crib/baby cage. we felt silly as she ran onto the inpatient floor
In the coming few days she will tested for the most likely stomach bugs including C. diff
and rotavirus, and get bloodwork done to test for some other causes of her problems. She will also get another in her long line of belly x-rays called a KUB (for Kidney, Ureter, and Bowel). Somewhere in the belly Children's there is a master file with the number of x-rays that Ellie has had. My guess is that she is well over the 100 film mark.
Hopefully one of these tests will tell us what is causing her to dump fluids. There is a possibility that none of them will be the smoking gun but we need to weed those out before we move on to other possibilities like anatomical changes.
We made it just under six months this time between stays but it seems like forever since we have been 'in'.
Abby's guess for the over/under bet is 2 nights. I am taking the over.
This is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.
5 comments:
Hey guys, we're sorry to hear you're back in the big house. We're thinking about you.
Just to be contrarian, I'll take the under :-) Best of luck!
I'm glad you're going to figure out what's going on. When you told me yesterday that she'd spent the morning cuddling on the couch, it didn't make sense considering the wild woman I chased around when I was there. As soon as she'd like a visitor let me know and I'll get in the car -- I want to see that monkey act. I love you.
oh no fun at all!
Here's to hoping they find out what's wrong with ellie soon!
Ugh sorry you're back in :( but hey- 6 mos out is pretty darn good!!!! Well, at least we think so over here ;) Anyway, I'll pray you can find something to explain the ostomy explosion- I hate chasing GI issues- they are SO hard to get to the bottom of... no pun intended ;) Anyway, "hi" to Ellie from us, and we hope you are home soon! We are coming in for an appt on Tues, but you will be LONG gone by then.... :)
Jessica
www.caringbridge.org/visit/eithenerosehilliard
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