My daughter is Dakota, she is 5 years old. They put in an NG tube because she wasn’t eating. We were so mad when we saw her with it in. I was the only one that could put it back in. Then she had surgery to put in the G tube in her stomach. That was a pain and a headache. It leaked one night and she had a huge rash on her leg. They told us it wasn’t coming out until she was 5, but she did awesome and we got it out way before that. She has kidney disease.
We got Social Security for her in the NICU. I was happy to get it until all these overpayments happened and we have been fighting for over a year now. Finally yesterday we actually got to talk to someone who could help. We also got Medicaid in the NICU which has helped a ton with all her issues she has been having.
I found out that some insurances will give you a check for the mileage you go and back to appointments with your kid. My daughter insurance will pay for diapers after 4 if they are not potty-trained. The hospital should let you know they have social workers that will help you in the hospital and come once a week they are very helpful.
Make sure when you’re at the hospital you ask as many questions as possible. The more you know the better you will feel. My daughter is doing awesome after many scary situations.
Submitted by Kelli Carpenti