An update on my baby being on Day 3 without anything to eat and being just in IV fluids. They want to keep her NPO because her ostomy output is at 17kg/ml and needs to be at a 10kg/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. Me and husband are so disappointed with the lack of care these physicians are doing even her long term doctors that were seeing her since her NICU days. I’m looking at other options as in going in to another hospital or getting new physicians for her.
Don't hesitate to get a 2nd 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 kinda near me (under 3 hrs). 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?
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,529 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
https://www.reachhd.org/roos-journey/malachis-story
Try to reach out there for more specific help.
there is an email on the bottom of the site there is a envelope icon and it’ll give you the email. I tried to post it several times here and the post keeps getting messed up.
https://www.reachhd.org/
Yes her electrolytes finally have been stabilized, we are so happy about it! She is now finally being 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 Illiostomy 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.