NICU Diary Day 92

Saturday, January 06, 2001

Ventilator Update

I am still going strong off the ventilator, and I gained another ten grams since Thursday. The doctors took a chest x-ray of me yesterday to make sure that my lungs weren’t collapsing from working too hard. They said that I had a perfect chest x-ray and everything looks great. Wow, so much good news in one week is almost too much to hope for!

Insurance & Discharge Update

Yesterday, Mommy spent about two hours on the phone with a lady from Children’s Special Healthcare Services (CSHCS). She said that if I can get my Medicaid eligibility processed while I’m in the hospital (I’m only Medicaid eligible while in the hospital), then Mommy can sign a contract with CSHCS. This is important because we won’t have to pay CSHCS for coverage in 2001 if the contract is signed while I'm under Medicaid. It’s a very confusing game. Basically, it all comes down to being savvy about knowing when to apply for things and sign contracts. Fortunately, our attorney knows the system and lots of people within the system that can help us.

The bottom line is that once my Medicaid is processed and the contract with CSHCS is signed, I can be discharged! CSHCS will not pay for night nursing care, but they will pay for 180 hours of respite care annually. That is enough to give Mommy and Daddy about four hours of help once a week or for a nurse to accompany Mommy on some of my daylong clinic appointments.

We are giving up the fight for home nursing. I'm now off the ventilator, so the hospital will discharge me without the 16+ hours/day requirement. We will not win a fight with the insurance company if I'm no longer vent-dependent, and Mommy and Daddy are tired of the game. They want to bring me home.

I’ve been having lots of fun with the nurses. Mommy says that I now have a “harem” that includes Tracy, Wendy, Joan, Connie, and Paula. They all enjoy taking care of me, which makes Mommy and Daddy very happy.

Wendy is getting teased because she carries me everywhere. I’m becoming her “little helper." After Mommy and Daddy left this afternoon, she and I had lots of fun during bath time. Joan, who is taking care of me this evening, brought me a going home present. She got me a really cool mirror for my crib that lights up and plays music.

Earlier this week, Mommy used some of my Christmas money to buy a front carrier (since I have to be held all the time), a nursery monitor, toys that attach to my swing, and a mobile for my crib. I need to come home soon before Divot starts playing with all of my stuff!