Kinnick Kay and Carver Lee: September 27th, 2008

Saturday, September 27, 2008

September 27th, 2008

Well, it's that time of year again. Birthdays. Hayden turned 3 last weekend. Kirsten turned 19 this weekend, and Harrison will turn 11 on Thursday. We're planning a party tomorrow. It hasn't been a very smooth ordeal. I didn't have nursing last weekend. I only had nursing 1 day the prior weekend, and I don't have nursing again this weekend. This makes getting out with Bob to get things done virtually impossible. We still don't take Kinnick and Carver in public places due to their lungs. I've managed to pull just about everything together. Kirsten picked the cake up for me today and .... the cake is messed up. They asked if I could bring it back to have it fixed. HA! I was lucky to have a few minutes of Kirsten's time to pick the cake up before she went to work. So, unless I want to pack both kids and the 3 year old up to take a cake (that requires 2 hands to hold) back to get it fixed, I'm stuck with a birthday cake for "KRISTEN" instead of Kirsten and a Jets helmet in the wrong colors. I'll post a picture of the cake after the party. I'm just really frustrated.

Speaking of nurses, my Monday/Tuesday nurse turned in her notice. She'll be moving out of state November 11th. So, if you know any good nurses that want to work in a home with 2 babies, send them my way. I have part time or full time available. I prefer that they work at least 2 days and preferably 2 days in a row.

Ok, I'm done with that.

Kinnick and Carver both got colds about a week ago. I'm not sure where the colds came from. Nobody else in the house has a cold. Carver's nose is so stuffy that he won't breath his O2, so I'm having a terrible time keeping him oxygenated. The doctor won't give him anything except a nasal spray due to his other meds and age. They're helping a bit, but I haven't had sleep for the last week. Kinnick's cold isn't bad at all. She's just up a bit on her O2. Neither of them want to eat. I'm not sure what has caused the setback in eating. It could be the cold or just new nurses that aren't familiar with their feeding and cause the feeds to take too long. They don't like to eat and certainly don't like sitting in the chair being forced to eat for lengths greater then 30 min. The lack of sleep doesn't help frustration levels.

I've been trying to decide on Carver's cochlear implant. We were given a couple to pick from. I've joined a CI support group and have been asking lots of questions and getting great feedback. I have a few more questions for the ENT/surgeon before making the final decision. We'll see the ENT/surgeon on Tuesday.

That's about it for right now. Kinnick is mad, so better run.

3 comments:

Amy said...: Shannon,

Next time please call us! We are just around the corner and would love to help anytime we can.

Amy; September 28, 2008 at 10:32 PM
Sarah said...: First of all, I'm a dope as I just recognized the significant of Kinnick and Carver - with Emery having been born at the University of Iowa and the NICU being directly across from Kinnick Stadium. If there is every anything you need from there, please let me know lol! I'm there once a month.

Just checking in to see how the oxygen and stuffy nose are going?; September 29, 2008 at 3:30 PM
Anonymous said...: How did the party go? Hope you were able to get it all together! Are the kids all healthy and well now? Charlie seems to get sick every weekend after a week of going to the babysitter (he only goes 4 hrs a day but it's enough to get exposed!!!) I sure hope you can come to the reunion. I guess 270 people already responded that they are coming. I suggested we have lots of purell handy but I know it's goign to be during RSV season. Maybe we'll have to make it a summer deal if we have another one. If you can, come!! I'd love to see you!
Neva; October 1, 2008 at 8:50 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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