NICU Diary Days 56 & 57

Friday, December 1, 2000 & Saturday, December 02, 2000

Discharge Update

It has been a very upsetting couple of days. Yesterday afternoon, two discharge planners came to talk with Mommy. They did not have good news. Daddy’s insurance only covers 400 hours of nursing care per year, which I would use up in about a month. If I come home on a ventilator, I'm required to have 24-hour care. According to hospital policy, this means I need a minimum of 8 hours/day nursing to help Mommy and Daddy take care of me. The 400 hours is not enough for the hospital to safely discharge me.

To make things even worse, Children’s Special Healthcare coverage doesn't pay for home nursing care at all (only 2-4 hours/week of respite care). Medicaid is the only program that provides enough home nursing for me (up to 16 hours/day), but I don't qualify. I'm an "insurance hostage” at the hospital until these issues are resolved.

The discharged planners told Mommy that it is VERY unlikely I'll come home within the next 3-4 weeks. They gave Mommy the name and telephone number of a parent/child advocate attorney. She will review Daddy’s benefit's policy and look for ways to pressure the insurance company to approve home nursing. It is basically our last hope for getting me home within the next 1-2 months. Mommy and Daddy are very upset and discouraged. They want to take me home, but they know that they cannot possibly take care of all my needs without nursing assistance.

Ventilator Update

Mommy and Daddy have also been frustrated with the neonatoligists. My vent weaning strategy has been very loose. Today, we finally got a schedule put together. I'm going to be off the vent every day from 8:30 a.m. to 2:30 p.m. and from 5:30 p.m. to 11:30 p.m. That gives me a six-three-six schedule and then rest on the vent overnight.

If I tolerate this schedule for a few days, Mommy and Daddy are going to ask my doctors to extend the time a little bit more to see how I do. It is now more important than ever for me to get off the vent completely. I can be discharged without nursing care if I'm oof the ventilator. As it stands now, I'll have a ventilator, oxygen, trach supplies/care, and a feeding pump and tube when I come home.

Tube Feeding Update

I'm now using a feeding pump similar to the one that Mommy and Daddy will have when I come home. They started learning how to use it today. Like the trach care, the feeding pump will be foreign to Mommy and Daddy for a while until they get the hang of how it works.

A home ventilator also arrived at my bedside. Mommy saw it yesterday. It stands on a pole and is about the size of a laptop computer. There is also a humidifier attachment for my trach mask and a place for an oxygen tank. Mommy and Daddy will be learning more about my home ventilator next week when I start to use it.

Two Months in NICU

Today is my eight-week birthday, and I now weigh 5 pounds 10 ounces. My latest CT results haven't come back yet. The preliminary one of my brain shows that it is the correct size for my gestational age and that there are no hemorrhages. Mommy got a lot of misleading information about my scans from the new resident doctors yesterday. She refuses to speak with the residents anymore other than to make requests for consultations with an Attending!

For December, I have an all-new team of neonatologists. Just what Mommy and Daddy need after the insurance fiasco they heard about yesterday!!!!!!

Daddy also saw a note on my chart from 1:00 a.m. last night. It said a nurse found me lying on my side completely out of the c-spine brace. I was reportedly checked out by the doctor on duty. Talk about making Mommy’s blood pressure go through the roof! She will definitely be mentioning this to the nursing manager on Monday.

The only thing that made Mommy and Daddy feel better was holding me for a long time today. I was awake for a good three hours while they were there and sucked on my pacifier a lot. Mommy and Daddy did all of my trach care, which was much easier with just the two of them. It always seems to turn into a big event when too many people are involved in helping.