Kinnick Kay and Carver Lee: Right Cochlear Implant Removal

Wednesday, June 9, 2010

Right Cochlear Implant Removal

Carver had his right Cochlear Implant removed today. What a long day. We had to be there at 8:30am and got home around 5:00pm. The doctor feels like we made the right decision - to remove the implant. When he opened everything up, he could see infection all the way into the mastoid. This was obviously an infection that wasn't going away. He took a number of cultures and is going to try to get us some answers. Some of the cultures can take up to 6 weeks to yield an answer. We won't be able to put the implant back in for at least 3 months. It could likely take longer depending on what it takes to rid of this infection. This has by far been the worst recovery after CI surgery. Carver has been a mess all day. Normally, he's crabby after surgery, but back to himself by the time we get home. Not this time. This time, his throat has been bothering him from the tube they put down his throat to breath for him. His stomach is bothering him from the drugs they gave him. They gave him versed to calm him before surgery. I'm not quite sure why he needed it. He's a pretty happy guy and goes to anyone. Then after surgery, they gave him morphine - "just in case". I wish I was there when they made the decision, because I would have asked to give him something like Tylenol with codeine vs morphine. His bowels are having quite a time waking up and his stomach looks like he is 9 months pregnant. I'm sure his head hurts from all of the tugging to get the implant out and all of the cleaning they did to get rid of the infection. I'm hoping all of the drugs will wear off tonight and that his throat feels better by morning. Poor guy. I hate making him have all of these surgeries. I just want to give him every possible opportunity to hear. Hearing is such a huge benefit when you are blind. I have no way to improve his vision. I can avoid losing any more vision, but I can't get back what he has already lost.

Please pray that the doctors are able to figure out what this infection is and are able to rid of this ugly infection. Please pray for a speedy recovery and a quick return to hearing with his right ear.

2 comments:

Sherri said...: I am SO sorry! I can't believe they did all that to Carver :( We are praying for everything you requested. I can't blame you one bit for doing everything for the chance at hearing with both ears! That is huge. I'll call ya later.; June 10, 2010 at 9:11 AM
Melanie said...: So sorry to hear this. Could it be staph? I remember Val's son, Gage (Cochlear Kids) had a similar issue.

Sending good wishes your way.; June 10, 2010 at 4:17 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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