Kinnick Kay and Carver Lee: June 9th, 2009

Tuesday, June 9, 2009

June 9th, 2009

I had to move Carver's T&A surgery to 7/2/09. Kinnick started getting sick on Sunday and today she was requiring 1 1/2 lt of O2. We've been giving breathing treatments every 2 hours and she's still barely maintaining sats in the low 90's. I took her to the doctor yesterday and they gave her an antibiotic. It doesn't appear to be working, yet. We've been giving motrin and tylenol - rotating every 4 hours. With this, she still maintains a 99 degree temp. So, we took her back to the doctor today - trying to avoid the hospital. They gave her a script for a steroid to take for 5 days and a powerful antibiotic shot. The shot should yield results within 6 hrs. If it doesn't and things get worse, she will have to be admitted to the hospital for IV antibiotics. Anytime she gets a cold, it goes straight to her lungs. We were so close to giving up O2 during the day. Monday was going to be the big day. She was only on 1/8 lt Sunday. I'm so bummed. We should be out of the cold season. Not sure where this came from. Please pray that all of this works and she is not admitted to the hospital.

5 comments:

Jennifer said...: Shanon, Liam has been really sick too. I took him in Saturday where they did labs and everything looked good. But by this morning he was screaming and inconsolable. If he was a awake he was having a fit. I was at jury duty so my mom took him back in. They did labs again and it showed a viral shift. I am alternating motrin and tylenol too. I had never given him motrin and that really seemed to do the trick. He still doesn't feel good but at least he isn't screaming.
And I thought we were done with virus this season!

Sorry to hear about not getting the o2 off. Don't you just hate it when little things creep up and throw everything off.

I'll pray Kinnick gets to feeling better soon and that Carver doesn't get it!; June 9, 2009 at 9:01 PM
Anonymous said...: I hate to hear that their has been a set back!!! HOPEFULLY, its nothing major and the 02 can go bye bye soon!; June 9, 2009 at 9:09 PM
L said...: I'm so sorry to hear Kinnick is so sick at the moment. I hope everything improves soon for you.

http://theworldoflissa.blogspot.com/; June 10, 2009 at 2:55 PM
Mom2Juliana said...: That's exactly how it's been with Juliana. As soon as you think you will be free from the tubing and tanks something pops up. I will keep your family in my prayers as usual.; June 10, 2009 at 4:16 PM
Jodi said...: Oh no. . . so sorry to hear everything. I'll be praying that Kinnick gets to feeling better and doesn't have to be admitted to the hospital.; June 10, 2009 at 4:30 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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