They have started only weighing Maddie twice a week, on Mondays and Thursdays. Today we saw pretty much everyone involved in Maddie's care: her GI doctor, the social worker, the care coordinator, the nutritionist, the central line nurse, her NICU team, the physical therapist, and child life. Whew!
The update on Madelyn being able to come home:
When Maddie was born she weighed 1195 grams, which made her qualify for disability. She was placed on Medicaid, but because of the county we live in, it was switched over to a managed care insurance company. When it was decided that Maddie would need to go home with a nurse for 12+ hours a day, the in-home nursing company attempted to get the care plan approved by Medicaid and were told that the managed care company did not allow this service. Therefore, she would need to be put on straight SSI Medicaid. We have now spent nearly a week to get this accomplished. The social workers and care coordinator have been working VERY hard to get this approved and Dan and I even spent time calling DHS and Medicaid to try to get this done. We have run into a lot of brick walls. Now she has two cases open, one with the managed care company and another with SSI Medicaid. Every person we call at Medicaid and DHS gives us a different answer, so that's fun.
Today it was decided that Maddie can come home on March 25th! Yay! Except the nursing service may not be ready by then because Medicaid hasn't approved her funding yet. Boo! Basically, it feels like we are getting nowhere. Below is Maddie's reaction to all of this mess.
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| Captain's log, Day 110: All hope of leaving this place appears to be lost. |
Maddie's bottle feedings were raised to 35 mLs today. If she continues to do well digesting it, her overnight feedings will be raised this weekend as well. She is now getting 30% of her calories from breast milk. Maddie got a massage from the physical therapist today and was a lot happier and more active afterwards.
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