Kinnick Kay and Carver Lee: January 15th, 2008

Tuesday, January 15, 2008

January 15th, 2008

My heart goes out to all of the families who have lost a micro preemie. I can't imagine the pain of losing a child.

Having micro preemies is like being on a roller coaster ride that never seems to end. One minute things look great and the next minute things are falling apart. It all happens so quickly. We make split second decisions without truly understanding what these decisions will mean or what direction they will take us in the future. In the very beginning, it's all about making it to the next day. Then it's all about making it home from the NICU. Once we are home, we spend many days/nights worrying about whether we are doing things right. It also gives us time to reflect on where we have been and the decisions we have made. I have made many split second decisions and I can't say that I would have done anything different if given more time to make the decisions. I can also say that even with all of the pain I've been through, am going through, and will continue going through, I thank God for Kinnick and Carver and this experience. God has opened my eyes to a whole new world that I never really thought about. I have met so many wonderful people because of Kinnick and Carver. I look at a lot of things differently, now. We didn't ask for these babies. They were gifts from God. It's hard not to think about all of the pain associated with micro preemies, but the fact that God chose us to have and to take care of these micro preemies is a huge compliment.

3 comments:

Anonymous said...: You're grace and positive attitude are an example to all of us! May God bless you and your family!
Love,
Neva; January 16, 2008 at 9:51 AM
abby said...: I know what you mean about this turning your life completely upside down, and about the loss (we did lose one of our twins, sadly) and about meeting wonderful people we'd never have met under other circumstances....all of this (and the rollercoaster) could not be more true.

Anyway, I just wanted to let you know how much we're thinking about your guys and hoping that all goes well with both Kinnick and Carver's recovery from here on in....

Let me know if it's ok to link to your blog if you get a chance!

Abby; January 16, 2008 at 5:33 PM
23wktwinsmommy said...: We too were faced with almost impossible decisions when it came to S&E, (especially E b/c he was so incredibly sick.) There were nurses who quite clearly disagreed with our decision to keep treating and to give him a little more time. There were nights I stayed up crying wondering if we'd made the right decisions. Sometimes reading about people who are against resuscitation at less than 26 weeks really made me look carefully at the path we'd chosen, and the effects of those choices.
I can honestly say without any hesitation that I am so thankful for the choices we made.
My heart goes out to all those who have lost a micro preemie, and although I can never know exactly how they feel, I will never forget how close we came.
There will always be people who believe the choices we made are not the choices they would have made, and it's taken me a bit to fully digest that fact.
I will never be able to articulate just how thankful we are for their lives.
So glad I found your blog, and feel free to take a look back at where we've been over the past year and come to me with any questions/concerns.; January 16, 2008 at 5:42 PM

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