Kinnick Kay and Carver Lee: November 2011

Saturday, November 5, 2011

November 5th, 2011

Carver had another fabulous day. He acts like his ear is still sore - I'm sure it is. There is still blood draining from the ear. It's not much, but it is definitely still draining - bright red. The small pink raised bump is still on his forehead. I sure wish I knew what it was.

Big brother, Hayden got a new pair of Batman PJ's. They were too long, so I cut the bottom of them. Carver got the excess fabric that I cut from the bottom of Hayden's PJ's....

November 4th, 2011

Carver had a great day. No fever and he is acting like he never even had surgery. He still has blood draining from his ear. It's not too bad, but we're still keeping a cotton ball in his ear to catch it so it doesn't get all over the place.

He has had a strange pink spot on his forehead since he came from the hospital. I'm not sure what it is. It' a small raised bump about the size of a nickle. I've put lotions and hydrocortizone on it, but it doesn't seem to want to go away. I'm wondering if it is an allergic reaction to the tie that was used on his original gauze wrap. His skin is so sensitive. His incision looks really good. He has little to no swelling. He slept really good last night - thank God. We really needed sleep after the first night.

Friday, November 4, 2011

Halloween 2011

This year, Kinnick and Carver were little black Lab puppies for Halloween. Kinnick talked and talked about how she was going to "trick or treat", but then was too afraid to go to the doors. Maybe she'll be more interested next year.

Carver's pre-school had a parade to show off all of the kid's costumes. Carver got to ride in the wagon. Our neighbor's son attends the same school, so she snapped a picture of Carver and sent it to me. He was so stinkin cute!

Thursday, November 3, 2011

November 3rd, 2011 - Day 1 after Surgery

Carver had a good day. He only required one dose of regular Tylenol. He played and ate today.

Around 5:00pm, Carver started running a low grade 100.4 fever. He also started gagging again this evening. We gave him a suppository to help his digestive track move. This seemed to help. The gagging went away and he had a couple of small stools.

We took the bandages off today. The incision is smaller this time, but thicker. Everything looks good. I don't even see much swelling this time. The bleeding continues from the ear. He has soaked a couple of cotton balls today. We've been taping cotton balls in his ear to catch any blood.

Carver's incision....

November 2nd, 2011 - Right Cochlear Implant

The day has FINALLY come - after waiting nearly an entire year. Carver had surgery this morning to re-implant his right cochlear implant. They started the surgery at 9:10am and didn't finish until almost noon. He was really sleepy and therefore was requiring lots of oxygen. He's never been this sleepy after a surgery. He was still sleeping at 3:30pm, but they went ahead and released us. They knew we had oxygen and monitors at home.

Once we got home, Carver continued to sleep until 6:00pm. We finally put his left cochlear implant on, and he woke up ready to play. Blood soaked through the white gauze bandage. I was concerned, so I called the Doctor around 9:30pm. The Doctor wasn't concerned. He said this is common with revisions. I guess they bleed more. Carver got tired quickly, so we put him to bed.

Carver slept until around 1:00am and then started gagging and desatting. I had to vent his stomach. His digestive track was still sleepy and his tummy was filling with gas. I ended up having to vent his stomach a couple of times an hour the rest of the night. Not such a fun night. I gave him two doses of Tylenol with codeine throughout the night.

Carver anxiously waiting for surgery.

Carver shortly after surgery. Ready to go home.

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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