NICU Diary Day 76

Thursday, December 21, 2000

Mommy tried to wake me up when she came to see me today. It seems that I have my days and nights a bit confused. They all seem to run together in the NICU! I did wake up a little for occupational therapy. I was doing really well with my sucking but still didn’t get anything out of the bottle. The speech therapist said that I'm definitely getting stronger.

Mommy and Daddy gave me a bath tonight and did my g-tube care for the first time. Caring for the g-tube, so far, isn’t much different than caring for my trach. They have to clean around it and make sure that it stays as dry as possible. Mommy just about freaked out at one point today when I pulled on the tube with my foot while she was changing my diaper. The tube is usually pinned to my diaper to prevent it from pulling too much on my stoma, but it has to be unpinned when my diaper is changed.

Mommy and Daddy are looking forward to the tube being replaced by a “button” in six weeks. At least the button is flush with my belly with nothing hanging out pulling on things. They also had to be careful with my bath to not get any water in or around the tube site. I’m back to sponge baths now and don’t get to sit in the basin of water anymore. I didn’t much care for that anyway!

Mommy took a break from the NICU and went to the parent’s support group this afternoon. It was kind of nice to talk with other parents who have babies in the NICU. Although, know one seems to have babies with all the birth defects I have. I am a very unique patient!

Mommy is considering taking a vacation day from the hospital tomorrow. But, she isn’t sure she will be able to do it; she'll miss me too much. Daddy is still planning to come and hang out with me though. This has been a very hard week. We're all sad that I still can’t come home.

Kathy, the nurse that Grandma B. knows, called Mommy last night. She isn’t able to leave her job at the hospital to take care of me, but she will let Mommy know if she knows of any other nurses that might want to care for me. Mommy did get some good news from “Children’s Special Healthcare Services” (CSHCS) state insurance program.

The attorney and discharge nurse both told Mommy that CSHCS only covers 180 hours of home nursing per year (respite not private duty). Martha, the lady that Mommy spoke with at CSHCS this morning said that they would cover 180 hours of respite care plus they could establish a “care coordination plan” for me that would cover home care due to my ventilator dependency. This seems almost too good to be true, but Mommy is definitely going to check it out some more with our attorney. In the meantime, we are still pushing for my “Medicaid Waiver” application to be processed before I'm discharged. Oh, what a tangled web it all is!

P.S. Today I got a special candy cane ornament from one-year old twins who are NICU Grads.