Kinnick Kay and Carver Lee: October 16th, 2007

Tuesday, October 16, 2007

October 16th, 2007

Quick update..

Kinnick is doing amazing after her surgery. She is already on 1/8 lt flow at 100% oxygen. She is now on less oxygen then Carver. The doctor said that it is possible that she won't even need extra oxygen in the next couple of weeks. It's so hard to believe that her breathing problems were caused by acid reflux. With results like these in 1 day, I can't wait to see how good she is doing in 2 weeks. She came off the ventilator within a few hours of surgery and with very minimal swelling. The surgeon and doctors expected her to be on the ventilator at least 3 days. I guess Kinnick had different plans. She tolerated 1/4 feeds today. They will increase her feeds by 1/4 each day until she is on full feeds. Once she is tolerating full feeds, she can go home. The doctor expects both babies to be home the first part of next week!

Carver continues to do well. He is now on medication for his acid reflux and has not been spitting up. They have increased his calories to 30 cal/oz. They are trying to get his weight up. Kinnick looks huge compared to him and is only on 22 cal/oz. Carver was seen by the ENT yesterday. The ENT will fit Carver for hearing aides once he has been dismissed from he hospital. He doesn't feel like putting him in hearing aides while he is in the hospital would be a good idea - too much noise. He still believes that Carver has profound hearing loss. We will try the hearing aides for 6 months.

Thank you for all of your prayers! As always, they have been answered. We couldn' have expected anything more. Kinnick is doing fabulous! Thanks be to GOD!

2 comments:

Anonymous said...: I'm so happy that Kinnick is doing so much better after surgery. That is wonderful. I pray every day that they both get to go home soon. I hope you always know that all of you are in my prayers! I would love to sit down with you sometime and meet face to face. I will try to send you an email.
All Our Love,
Ryan, Jodi and Olivia; October 18, 2007 at 4:02 PM
Anonymous said...: Hello! I'm a blogger of Jodi's and thought I would check on some of Olivia's friends. It sounds like your kids are doing great, and I'm so happy for you! They are absolutely adorable! I hope that the Lord will let you take your little treasures home with you! Continued prayers for you and your family.
Stay Strong,
Shea; October 20, 2007 at 10:22 AM

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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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