An update on my baby being on day 3 without anything to eat and being just on IV fluids. They want to keep her NPO because her ostomy output is at 17 kg/ml and needs to be at 10 kg/ml. Like I said, I believe in my first post, I have read in the popular topics of high outputs and how people live with it in their daily lives without being dehydrated or having to run to the hospital. I need support and advice on what I should do best for my daughter. It just seems like my daughter is being experimented with, and I'm not okay with it at all. My husband and I are so disappointed with the lack of care these physicians are providing, even her long-term doctors who have been seeing her since her NICU days. I'm looking at other options, such as going to another hospital or getting new physicians for her.
Don't hesitate to get a second opinion if that is what your gut is telling you. I have family that moved from FL to Philadelphia due to their child's condition so she can have the best care (not Hirschsprung's). I think CHOP (Children's Hospital of Philly) is one of the children's hospitals someone referenced in your other post that also has experience with your baby's condition. I think Mayo Clinic FL would be closer to you than the Cleveland Clinic FL location. Nationwide that was also referenced is kind of near me (under 3 hours). You have a lot of options for your baby. She's blessed to have parents advocating for her like y'all are doing. Are your daughter's electrolyte levels stable with the current output rate?
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Try to reach out there for more specific help.
There is an email at the bottom of the site. There is an envelope icon, and it'll give you the email. I tried to post it several times here, and the post keeps getting messed up.
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Learn about some basic diet and ostomy pouch routines that can help prevent them.
Yes, her electrolytes have finally been stabilized. We are so happy about it! She is now finally able to eat after 3 days of NPO. The feed is through her NG tube!
I am so happy for you. I was born with cerebral palsy. My ileostomy came later as a result of an unrelated issue. I say that to say I believe parents of children with your child's condition should be your biggest and most reliable supports. Build yourself a support network of parents who have a child with this issue. I am sure there are social network groups out there. Us adults with ostomy bags, we can offer resources, maybe some advice, but it is those with lived experience closest to yours that, in my opinion, can help best. Imagine your child having a friend with the same condition. My friends with cerebral palsy are some of the best friends I have. And the disability community at large can offer a lot, but again, find those closest to your story who already went through this.
How to Manage Emotions with LeeAnne Hayden | Hollister
