Kinnick Kay and Carver Lee: May 20, 2008

Tuesday, May 20, 2008

May 20, 2008

Update on Kinnick and Carver's G-tube issues...

I took both babies to see the surgeon that did the G-tubes and Fundos. The surgeon said that Carver's granulation tissue will continue to form around the stoma until the site heals - about 6 months. He cut the existing granulation tissue away from the stoma and then used silver nitrate on the stoma - yuk! I hate seeing these things done. I have such a weak stomach. The gagging that Carver does could continue until he is 8 or 9 years old. I don't like this answer. He didn't do this until he got the Fundo. I think he is still refluxing and that he needs meds for the reflux. I'll continue to look into this issue. He gags so bad that he's going to tear the Fundo. The doctor didn't seem to be too concerned about Carver. However, he is very concerned about Kinnick's issues. He doesn't feel like the leaky G-tube is due to a bad Mic-Key. He feels like there is still something wrong with the gut. This is what I've been saying all along. I'm happy to finally have a doctor that agrees. He is going to review the upper GI study that was done in February while she was in the hospital. They tracked the upper GI all the way to the lower bowel. If he doesn't see anything on the x-rays (the hospital and GI specialist didn't see anything in February), he's going to schedule a Lower GI - 24 hour study. I still believe there is a partial block where the last surgery was done due to scar tissue. Since this is the surgeon that did the surgery, he should know exactly where to look. Kinnick has been hospitalized twice this year due to stomach issues. The stomach issues have never resolved. The GI specialist sends us home saying that the issue must have resolved since she is pooping. We've just been altering feed schedules to accommodate her intolerance. We do smaller feeds and fewer of them - leaving the majority for a continuous feed while she sleeps. This has kept things moving well enough to keep her home, but hasn't fixed the root cause. Hopefully this doctor will find the answer to our problem. I just pray that we don't need another surgery. Another surgery would be a terrible setback for her.

2 comments:

Anonymous said...: Can you explain what a fundo is? I don't know if I missed that somewhere. We will pray that the dr finds out what is wrong with Kinnick soon. This must be so frustrating!

On a fun note- I love all the new pictures! You look great! I would never have guessed you were 40! And I'm not even close to having Charlie graduate and I'm already crying thinking about him growing up!

Love
Neva; May 21, 2008 at 1:18 PM
24weeker's Mama said...: Sorry to hear about Kinnick's Gtube problem. I hope doctor can fix it.

Sam is going to have eye surgery next week. It's to open his tear duct which is still blocked.

Kisses for the twins,
yani & sammy; May 22, 2008 at 2:12 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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