Kinnick Kay and Carver Lee: October 4th, 2008

Saturday, October 4, 2008

October 4th, 2008

Kinnick is still sick. The doctor ordered a CBC and it showed elevated white blood cells (23,000) indicating that she does have some sort of infection. She gets better for about a day and then runs a temp again. It's crazy. She's still on 1 lt of oxygen. Hopefully things will look better this week. We could sure use the sleep. Carver is still a little stuffy, but definitely getting better. He's been on 1/2 lt oxygen.

Kinnick is sitting really good. Carver FINALLY got some leg wraps to help hold his legs straight so that we could get some weight on his legs/hips. They help so much. It was killing our backs to hold his limp body while pushing his knees straight, keep his heels on the ground, and with our 4th hand, hold him up straight. I'm hoping that once we get some weight on his legs, he'll start trying to hold his own weight up.

We finally have a date for Carver's first CI. He is scheduled for surgery 11/12/08. He will have to spend one night in the hospital - St. Francis. They will activate the CI after one month and we'll begin speech therapy. I can't wait to get it started. The audiologist said that Carver's ABR had the flattest response of anyone he has ever seen. They couldn't get a single response at 120 db in either ear. Hopefully the bad test results are just due to a back cochlea.

My home health agency is starting to look for new nurses to cover my Sat, Sun, Mon, and Tues shifts. Hopefully we'll get another good nurse. I'm so tired of training nurses just to have them leave after a couple of months. It's hard on the babies and me.

My daughter had her first car wreck yesterday. She's been driving 3 years, so it was bound to happen some time. She was driving across town with 2 of her brothers. None of them were hurt. They just got minor scrapes and cuts from the seat belts (all were wearing their seat belts thank God) and air bags. The wreck was not her fault, but it did total her car. This stinks because the car was paid for and was supposed to last till she graduated college. The insurance company never wants to give you enough to replace your car with an equal car. So, I'll be looking for a new car over the next week.

3 comments:

Anonymous said...: Is Kinnick feeling better now? I think you did the right thing to keep her at home... it's way germier at the hospital!
Love
Neva; October 6, 2008 at 1:44 PM
Anonymous said...: Shannon,
I've been thinking about picking up a part time job. You guys always did crack me up. I work Tuesday, Friday and all weekend this week. Call me at work and let me know what agency you guys are using. Maybe this could benefit more than just myself!
Take Care,
NICU Nurse Holli; October 6, 2008 at 8:34 PM
24weeker's Mama said...: I am glad Kirsten & her 2 brothers are allright from the accident.
I hope Kinnick feels better soon.
I'll pray for Carver's CI surgery.

Love,
Yani; October 8, 2008 at 2:41 PM

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Disability Determination when you don't qualify Financially

In order to extend Cobra medical coverage 11 months due to a Disabled member of the family, a Disability Determination Award letter is required. How do you secure a Disability Determination if you are not intitled to an Award? You ask for a Special Determination (SSA-553) of Disability. How did we get this? Here are my contacts:

We live in Wichita, KS. My contact at the Social Security Administration in Wichita was Nick Janzen. His phone number is 866-931-4486.

The Kansas/Nebraska/Iowa/Missouri Regional SSA office is located in Kansas City. My contact in the Kansas City Office is Mike Stiles. His phone number is 816-936-5740. Mike is able to communicate with all of the Disability Experts including those at the national headquarters in Baltimore, MD. Mike was able to guide my Wichita, KS contact, Nick in order to complete the necessary paperwork to obtain a Disability Determination even though we didn't qualify under Title II or Title XV1.

Here's is how it worked:

Nick completed a paper SSA-3820 (for a child), and obtained as much medical evidence as possible from me. He also prepared an SSA-5002 with the date of my qualiffying event (date I went on Cobra initially). This material was then sent to the following Address:

Office of Medical and Vocational Expertise

P.O. Box 17786

Baltimore, MD 21235-7786

A Manual Development Worksheet (MDW) was used to document my case.

The OMVE will prepare and release the appropriate notice for this type of case and will return the completed case to the field office along with a special determination (SSA-553) of disability and a copy of the notice.

Overnight address:

SSA, Office of Medical and Vocational Expertise

1st Floor Oak Meadows Building

6401 Security Blvd

Baltimore, MD 21235

Sedgwick County Developmental Disability Organization - MRDD Waiver information

Kinnick and Carver are on the MRDD Waiver. This is a needs based program based on being mentally retarded or developmentally delayed - not income. So, regardless of income, you may qualify. What benefit are we getting from the MRDD waiver? If you are on this program at age 5, you will receive a medicaid card. Prior to turning age 5 (while on the waiting list), you qualify for case management and family support funds. Case management is very helpful in helping you find funding sources if needed. The family support funds have provided all of K&C's expensive equipment needs. Due to budget cuts, the family support funds are not available this year, but could return at any time. You shouldn't wait to sign up for this program. There is a waiting list to receive the medicaid card at age 5. The waiting list is 2 years or longer. Therefore the sooner you get on the waiting list the better. You do not have to be 5 to be on the waiting list.

How do you apply for the MRDD Waiver program?

Rachel Ryan

Intake and Referral Coordinator (SCDDO)

615 N. Main

Wichita, KS 67203

(316)-660-7640

http://www.sedgwickcounty.org/cddo

Kansas Medicaid - Travel Expenses

I'm posting this to help others. It has been a struggle to get Medicaid to pay for our travel expenses. I have been able to get them to commit to paying $81.00/day hotel expense, $27.00/day for food, and .20/mile for mileage to/from.

The KEY is to call the number(s) below before you leave on the trip (unless it is an emergency).

1-800-285-4978 Option 2 (Out of State Prior Auth)
The doctor from the referring hospital/office and the doctor that you will be seeing will need to send paperwork for your approval. You can call this number to confirm this is getting done.

1-888-561-8747 x5002 (Meals and Lodging)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

1-888-240-6497 (Transportation)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

Medical Transportation Approval Process

In order to obtain approval for Medical Transport, the following steps were followed:

1.) Kinnick and Carver's primary physician (Pediatrician) wrote a "Letter of Medical Necessity". Below is a small sampling of the letter:

LETTER OF MEDICAL NECESSITY

Date:
Insurance Company:
RE: Kinnick and Carver
DOB:
Diagnosis: ROP, 23 wk gestation twins, severe chronic lung disease.

Attention Medical Director:

The letter requested approval for an air ambulance round trip flight for the specific eye surgery. It then listed medical reasons why Kinnick and Carver's medical needs meet criteria for air ambulance transport for their eye surgery. Their medical needs consisted of the following:

Continuous oxygen per nasal cannula
Continuous cardiac and respiratory monitoring
Feeding intolerance that requires gastrostomy feeds
Deep suctioning using a suction machine and catheter

Signed by the Primary Physician

2.) My Primary Physician faxed the Letter to Kinnick and Carver's Case Manager at my Insurance Company.

3.) Kinnick and Carver's Case Manager forwarded the Letter to the Medical Director for approval. This process only took a couple of days.

4.) Kinnick and Carver's Case Manager faxed the Approval to Air Ambulance and my Primary Physician.

Kinnick Kay and Carver Lee

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