Kinnick Kay and Carver Lee: January 12th, 2008

Saturday, January 12, 2008

January 12th, 2008

My favorite MI NICU nurse, Sue, came to my rescue again. She brought a pack-n-play to my hotel room for Carver to sleep in. She has been my guardian angel. The first time I came to MI, she was the first person that went out of her way to be nice to me. I took a taxi every day to my hotel. She offered to give me rides on the days she worked - even though her work told her never to do this for people. She went to dinner with me several times, so that I wasn't always eating alone. She was good to both of my babies their entire stay. She took care of them every shift that they would let her. She sends cards to my babies for every holiday. She offered to come to the hospital to watch the babies while I return my rental car on Tuesday or to just watch Carver while I get out. She's just been a wonderful friend. I am so glad that I met her. She's such a good hearted person. William Beaumont Hospital is just so different from our hospital in Wichita. I really haven't met a nurse yet that doesn't act like they like their job. They are always cheerful and willing to help. I don't know where they find these people. I wish some of them would go to work for Wesley's Peds ICU and floor.

Carver didn't seem to have a problem sleeping with mom. Below is a picture of him all snuggled in. He looks pretty content. I don't think he even moved an inch all night. I had to wake him up at 7:30am.

Kinnick has been getting in trouble for knocking her cannula out and her eye patch. They put "naughty" braces on her. This seems to take care of the problem. Poor girl. Guess we have to do what it takes to allow those eyes to heal.

Below are a couple of pictures from our flight. you're seeing the majority of the plane. I am seated in front of Kinnick at the back of the plane.

Kinnick

Carver

3 comments:

24weeker's Mama said...: Glad that Sue is really nice to you. I think i remember her, is she the one with the short hair? I like her too. Shanon, you should see the NICU nurses in Hawaii, they are ANGELS. I feel like they are part of my family. They have aloha spirits (that's what we call them).

Take care,
Yani; January 12, 2008 at 11:46 PM
23wktwinsmommy said...: Just checking in to say I have been following Kinnick and Carver nd praying for all of you.
Thanks for keeping us updated.
I'm looking forward to reading about you all back at home!; January 13, 2008 at 3:09 PM
23wktwinsmommy said...: This comment has been removed by the author.; January 13, 2008 at 3:09 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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