Kinnick Kay and Carver Lee: January 23, 2008

Wednesday, January 23, 2008

January 23, 2008

Kinnick had to return to the hospital on Tuesday due to a possible bowel obstruction. This morning she spiked a 103.9 temp. So far, the CT scan, x-rays, and blood work haven't proven that there is an obstruction. They started partial feeds tonight, but had to stop the 10:30pm feed due to some de-sats. The de-sats were in the low 80's which really isn't anything odd for Kinnick and she returned to upper 90's within minutes. I'm not alarmed by the de-sats. She still sounds great and is still on 1/2 lt oxygen. They will restart partial feeds at 1:30am. Hopefully she will get to go home tomorrow.

While my posts may offend some, I only post MY OPINIONS, feelings, and what we are going through. I try to remain as positive as possible at all times and I don't alter the truth. However, it is difficult to be positive 100% of the time when you are faced with any life altering change. My blog is not intended to debate issues with others. Everyone is entitled to their opinions. While I appreciate your suggestions, I still form my own opinions and don't need to be told what my focus should be. I think my focus is pretty clear.

4 comments:

Anonymous said...: Hope Kinnick is home soon! We're still thinking and praying for all of you every day!!
Love,
Neva; January 24, 2008 at 8:09 AM
Anonymous said...: amen sister! i hope kinnick is doing better soon. you had a bad experience and i know things like that happen in hospitals. people should mind their own business, as this is YOUR blog to write what you want and about your experience. kinnick and carver (and you) have been through so much and you want the very best for them. that comment earlier about how you should just be happy that they are alive because they are 23 weekers is just stupid.
love ya and sorry we didn't see you when you were here.
stacy; January 24, 2008 at 12:42 PM
24weeker's Mama said...: I pray for Kinnick recovery. Hopefuly she will go home soon.

Love,
Yani; January 24, 2008 at 1:45 PM
Anonymous said...: Wow! I'm truly appalled at some of those comments. Notice how none of them were brave enough to leave their names. I think it's horrible that you have to defend yourself and your opinions. Like Stacy said, this is YOUR blog about YOUR experience and no one should make you feel like you have to censor your thoughts and feelings.

My thoughts are with you and your adorable twins. I hope Kinnick's lungs rebound quickly from her hospital visit.

Kerry
(a friend of Jodi, mother of Olivia and Angel Logan); January 25, 2008 at 9:16 AM

Post a Comment

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

Our Journey

Email me:

Links

Blog Archive

Resources

Blogs I like to follow