Saturday, May 24, 2008

Still home.

We are still home, and Ellie is doing better. Wednesday was a scary day in the way of fluids. Ellie's ostomy output total for the day was 1,700mls (normal is around 700mls) and her urine was only 300mls. This would completely freak us out if we hadn't gotten blood work back that said her electrolytes were fine. That being said, Ellie did spend the whole day on an IV pump getting extra fluids to make up for her VERY high out put.We took her off of her formula and put her on Pedialyte and turned the rate way down. After some quality time with her best friends Kipper, Tiger and Maisy she started to feel much better. By the end of the day we even gave her a tiny bit of noodles, which she loved.It was nice to be able to manage her care at home, nice for all of us. Thursday she was doing much better and after checking in with Dr. Jennings three times (each time he was in the OR and still answered the phone) we started her back on a dilute mixture of Elecare and pedialyte. She did well on Thursday but Friday the her output went right back up. So we just went back to pedialyte and we will give bowel a chance to rest and try Elecare maybe today or tomorrow.
She is doing well today and actually had been in very good spirits through this whole thing. When we talked to her GI doctor on Friday, we had to keep explaining that she is sick, just not acting sick. Sometimes I wonder if this is side effect of the Omegaven? One thing that did come out of all this past week is that her admission for a endoscope study of her and motility study of her colon, that was scheduled for Monday, had been canceled. The GI doctor overseeing the study said that because her bowels took such a hit over the past week, the results we would get next week would be false. So we are staying home and have to wait another few months for a new study date.

So for now we are watching our girl, tracking numbers and keeping the "go bags" packed.

On a side note:
Two pieces of great news!

  1. Carter Cates, see his blog He is a little boy from Texas that came to Boston for Omegaven. Omegaven did help his over all health and did improve his bilirubin, but his liver was too damaged. On Monday he got the gift of life in the form of a new liver, stomach, small bowel, pancreas and spleen. He and his family are doing well.
  2. Tyler Paul April was born yesterday! See his blog He is the new son of our cousins in NH. He was born at 28 weeks. He is beautiful and big for his age. His mother's water broke at 24 weeks and she managed to hold out till 28 weeks. It was a very long 4 weeks, but very worth it. Tyler was transfered to Dartmouth hospital and doing well. His mother is still back at the original hospital recovering from the birth. It is very typical when a baby is transfered the mother is not, our thoughts are with her as it can not be easy to so far from her baby.


Anonymous said...

Hey Guys! I hope things continue to be okay. You might have received my message when we found ourselves in your hood today. I'm hoping you were just out in the yard enjoying the day and that things are still going good and there were no unexpected travels. Talk to you soon, hugs to you all!

Anonymous said...

Thinking of you three and hoping that Ellie's back on track very soon and without a hospital stay.

Anonymous said...

Hi guys, I hope Ellie is still holding her own! we have similar days when Eithene has a GI bug. We've also been having tons of issues with Eithene and her ostomy output recently- I think its interesting that you mentioned that Eillie- can't poo without glycerin. Eithene has a similar issue- even though its all coming out her ostomy, and even though its the consistency of water, she can't get any of it to come out without 5 doses of 'help' everyday! (2 of miralax and 3 of lactulose) we are all stumped by that one!

ANyway, I hope the manometry is back on the schedule soon and you get some answers. Ellie looks SO good- really like a 2 year old- she is beautiful. Great job!