NICU Diary Day 67

Tuesday, December 12, 200


I survived my first blizzard! We got about 15”-18” of snow at our house last night. The nurse I had yesterday took care of me for 24 hours because there wasn't anyone available to relieve her. We made the best of things and had some fun though!

After my bath, she found some really cute quilts that were donated to the NICU. The quilts had ocean sea animals on them, and I have an outfit that also has sea animals on it. So, my nurse put the whole ensemble together to give me a totally coordinated look. She took a Polaroid and left it at my bedside for Mommy and Daddy to see. Beneath the picture she wrote, “Something’s Fishy!”


Today I had an upper GI done to check for reflux. Pediatric surgery is evaluating me for my g-tube surgery, which Mommy and Daddy have agreed that I need. We aren’t sure if I'll have the surgery before or after discharge. It depends on if a home-care nurse is found within the next 1-2 weeks and also when the surgery can be scheduled.


Mommy and Daddy came to visit me together today. The roads were still pretty snowy this afternoon when they arrived. Thank goodness for 4-wheel drive! Mom & Dad changed my trach and also re-taped the feeding tube to my face. Taping the feeding tube is pretty difficult for them, which is making the g-tube a more appealing option.


I was a little stinker and pulled out my NG tube while Mommy and Daddy were trying to tape it down. Thank goodness I only pulled it out a little and not all the way. Mommy checked to make sure it was properly placed in my stomach, but she had a harder time hearing the “swoosh” sound through the stethoscope this time. Her and Daddy aren’t real comfortable with the NG insertion and placement. I sure hope I don’t starve this weekend when they take care of me at the hotel!


Our attorney emailed a copy of the letter she sent to our insurance company. Mommy is also dealing with all the red tape and politics of applying for the “Children’s Waiver.” It's a Medicaid program that “waives” income consideration for children like me who have complex medical needs. If I qualify, the Waiver will provide private-duty nursing care for home. The county first determines my eligibility and then conducts an interview with Mommy and Daddy. There are only 400 spaces available in the State of Michigan. So even if I qualify, I'll be put on a waiting list. It's all very confusing and gives Mommy migraines!


Today, December 12, is the day that I was supposed to be born. That would’ve been one heck of a drive to the hospital in the blizzard we just had!

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