Kinnick Kay and Carver Lee: July 18th, 2009

Saturday, July 18, 2009

July 18th, 2009

One surgery down and 2 to go. We have scheduled the next surgery for 8/19. This one will be in Royal Oak, MI. K&C will both need to have their eyes looked at again. Carver will most likely have the lens removed from his left eye. This is making me nervous since we now know this is his only eye with vision. The concern that I have about removing the lens is that the retina may not be fully attached, yet. He has a sponge behind the left eye pushing on the back of the eye trying to help the retina to re-attach. He has silicone oil in front of the eye pushing from the front of the eye. Once we remove the lens, there is nothing to protect the cornea. The cornea and oil will not play nicely together which could cause many, many more problems which could result in losing the eye completely. So, we need lots of prayers that the retina has fully attached and we can avoid using oil once the lens is removed. The lens needs to be removed because the cataract is completely covering his lens. The cataract makes vision even worse. If the cataract continues to get worse, it will complicate the removal of the lens which could cause add'l eye issues. So, the lens needs to go. I'm hoping that Kinnick's eyes are stable and that no surgery is necessary.

We're going to drive to MI this time. K&C are off O2 during the day, so we won't need as much oxygen. When we fly (med flight) we can't take the stroller or extra oxygen. If they need to put an air pocket in Carver's eye after removing the lens, we wouldn't be able to fly for 5-7 days. In addition, we would probably be sent to our hotel while we waited for the air pocket to go away. This complicates things -- we would need a car, a stroller, O2, etc. So, Nurse Marci has agreed to take the long drive with me. It's 15+ hours straight drive time. We're going to take 2 days to get there and 2 days to get back. We'll drive 3-4 hrs at a time. We're going to try to make it a little vacation and find fun places to stop on the way there and on the way back - providing K&C are happy after surgery. We're also going to try to meet up with some of our Micro-Preemie mom friends that I've met through my support groups or while in MI.

2 comments:

Julia said...: I haven't checked your blog in awhile, so I need to do some catch-up reading, but I just wanted to say good luck with the upcoming trip and surgery, and Kinnick's smile during The Fishy Song is *adorable*! Best wishes....; July 18, 2009 at 9:08 PM
Anonymous said...: We'll be praying that everything with the trip goes well. Nurse Marci must be awesome! Hope you are able to enjoy some of the trip with the kiddos!
Love
Neva; July 19, 2009 at 3:19 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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