Kinnick Kay and Carver Lee: November 14th, 2009

Saturday, November 14, 2009

November 14th, 2009

It's been a while since I've posted. We've been so busy with appointments.

Kinnick had her PH Probe study done. They found that she refluxed more then 110 times in a 24 hr period. None of the refluxes contained acid. This just shows that the Prevacid that she is taking is controlling the acid. However, it also shows that the fundo-plication is not working. I have no idea what we do from here. I have an appointment with the GI doctor in December to discuss the findings. I'm pretty sure that they're going to want to re-do the fundo. This is a pretty big stomach surgery, and I am not interested in it, at all. However, something has to be done to get the lung infections under control. The reflux could be the cause of the lung infections. It's possible that the stomach bile is getting into the lungs causing the infections.

Kinnick and Carver both had EUA's to measure the pressure in their eyes. We didn't receive very good results for Kinnick. The pressure has gone up to 37. At this level, damage can be done to the optic nerve. In addition, it will keep her from seeing much of anything. I have no idea how she gets around the way she does. At this point, we know that she really doesn't see much more then lights and shadows. Carver's pressure was at 23. His pressure is also increasing. In addition, he has so much scar tissue in his only good eye that the doctor said that he probably wasn't seeing anything out of this eye. This means more surgery to remove the scar tissue. Sigh...

We received the results from Carver's sleep study. He is still having mild sleep apnea and is still having desats. This is an improvement from the previous study that showed severe obstructive/central sleep apnea. So, the T&A removal did help. However, he was ordered to remain on 1/2 lt of O2 while sleeping. They will repeat the sleep study again next summer.

Kinnick goes in Tuesday for a sono on her kidney's and a VCUG. They are checking for Kidney reflux due to her repeated UTI's. This takes place in the Hospital. Anyone that knows me knows that I hate taking my kids to the Hospital for anything - especially this time of the year.

Kinnick will get her first Synagis shot of the season next week. Carver didn't qualify this year. He hasn't had lung problems this year.

Kinnick and Carver will both get the H1N1 vaccine next week - finally. I've been stressed out over it.

Nurse Jane is now cancer free! She will be coming back this month. We're excited to have her back. We're sad to be losing Nurse Tracy. She has been a huge help and we've really enjoyed having her.

1 comment:

Anonymous said...: Wow! There is SO much for you to keep track of. I don't blame you for not wanting to go to the hospital! Seems like you catch more there than anywhere else. Keep us updated. We'll keep you in our prayers as always!
Love
Neva; November 14, 2009 at 9:24 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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