Wednesday, December 27, 2000
Mommy spent the morning shopping for storage bins to organize our medical supplies closet. She got all my supplies organized and labeled, and Daddy was very impressed. Now, she has to figure out where to put all the stuff that was in the upstairs closet!
Mommy also spoke with our attorney today. She revised the letter to our insurance company, and Mommy faxed it out to everyone this afternoon. The case manager with our private insurance doesn't think we will get more than the 400 hours covered under our plan. She said that it’s never happened before. At this point, we are getting desperate and the worse anybody can say is, "no." The attorney said that it's likely to be an ugly fight.
We've exhausted all other resources. Children’s Special Healthcare, the state insurance for special-needs kids, only covers 180 hours of respite care per year. Our last resort is the Medicaid Children’s Waiver. Mommy and Daddy think this is a long shot because even if I qualify, and that's a big if, there is a very long waiting list to get into the program. Michigan only has 400 spots available, and they're all full.
Mommy and Daddy are angry that there is no program to help middle-class families in our situation. Apparently, our only option is to move forward with very little help. Mommy is going to let our state representatives know how helpful their program are for families like ours!
Wendy had been carrying me around all day because I was cranky whenever she laid me down. The nurses say that I have "arms disease." Wendy had just laid me down when Mommy and Daddy got there, so they promised to not wake me up for a while.
My feedings were all messed up last night. I'm trying to go from continuous feeds since my g-tube surgery back to every four hours. I was being fed over a 2 ½ hour period as the first step toward getting me back on my schedule (my feedings before took an hour). The night nurse the last two nights, however, has taken it upon herself to change me back to continuous feeds because I'm fussy. Mommy and Daddy are furious about this. Wendy got me back on my “ramp up” plan and said that no one can change my feeding without doctor approval. I sure hope she’s right!
Mommy and Daddy took me on an outing around the hospital this afternoon. After our stroll, they gave me a bath and did all of my trach and g-tube care. They changed my trach, so I had the works!
I got to wear a new Ohio State sleeper that Grandma and Grandpa Dankelson gave me, and the red Old Navy polartec from Wendy. They're both pretty big on me. I think they are 3-6 month size, and I’m just now getting out of my preemie outfits.
Mommy and Daddy took pictures of me in the polartec. Unfortunately, by the time they got me all dressed and settled down for picture taking, I decided to fall asleep. It was a busy afternoon, so they tucked me in with my Michigan blanket. These team loyalties are getting very confusing!
Wendy said that Mommy and Daddy should take a break from the hospital tomorrow. She said they have “NICUitis.” She'll be there all day carrying me around, so I'll get plenty of attention if they decide to take a break.