Kinnick Kay and Carver Lee: October 27, 2007

Saturday, October 27, 2007

October 27, 2007

Sorry that it has been so long since I posted. Both babies finally came home on Tuesday. That was a very stressful day, but exciting day. The Home Medical Supplies place didn't bring their equipment to our home until 4pm on Tuesday - we were told we would be released at 10:00am. We didn't get home till around 2:00pm. I had no idea how much equipment we would need. By the time all of the equipment was dropped off, we looked like we just moved in. We had boxes and machines everywhere. It took a while to organize everything in a way that was useful. I'm still moving things as I go. The nights have gone amazingly well. Both babies sleep very good at night. Kinnick's saturation monitor goes off more then Carvers, so we get up to check on her quite a bit. Carver wants to sleep all night, but we have to wake him for his feeds. He has a hard time gaining weight, so we can't miss any feeds. The days have been very stressful. Luckily, I have a Home Health Care nurse that comes during the day to help me. The babies are on so many different meds that it takes both of us to keep them straight and given on time. In addition to the multiple meds, the babies have appointment booked nearly every day. It is a chore to get all of their equipment and them in the car and to the appts on time. I'm not sure what I would do without the help of the Home Heath Care nurse.

Carver has been on 1/4 lt at 100% oxygen. I don't even have to adjust his settings during the day - he just cruises along. We very rarely hear his alarms. He's been a sleepy little guy. He's starting to get a little personality - even starting to smile and coo. We are trying to schedule another BAER (hearing) test to re-evaluate his hearing. This should happen soon.

Kinnick came home on 1/2 lt at 100% oxygen. Her alarms sound a lot, and we were constantly adjusting her flow. By Friday morning, she was on 2 lt at 100% oxygen. We were having to suction her several times a day/night. She was on several breathing treatments, but we couldn't get her oxygen down to a reasonable level. We took her to the doctor on Friday morning and they sent her back to the hospital. She's back in the PICU at Wesley hospital. We were sad to send her back. The PICU is just full of sick kids and the germs are spread so easily in the unit. In fact, the reason she is back in the PICU is probably related to something she caught while she was in the PICU. She had been fluctuating a lot on her oxygen and had started spitting up a lot of mucus before ever coming home. It just got worse from one day to the next. They have tested her for several viruses, but nothing has come back positive. So, sounds like one of those "unknown" viruses. You know - the one they always say your child has when they don't know what's wrong. I'm not sure how long they will keep her. I would like her to be on a more reasonable level of oxygen before coming back home. Kinnick is supposed to get her Mickey Button on Monday. The temp G-tube looks terrible. It looks like a little rubber hose coming from her stomach with a pair of dull child size scissors to clamp it closed. The Mickey Button will be a little cap that just barely sticks up off her skin and is easily hidden. We are trying to schedule another BAER (hearing) test to re-evaluate her hearing. This should happen soon.

Please pray that Kinnick gets well soon, so she can return home with her family.

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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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