Kinnick Kay and Carver Lee: May 13th, 2008

Tuesday, May 13, 2008

May 13th, 2008

It's been a few days since I have updated everyone. Carver had to go back on O2 during the day. His heart rate was up and he was having strange de-sats at night. He would de-sat into the 60's. I would have to get up and shake him a bit to get his attention so he would breath better. So, I have him on 1/8 lt during the day. I had him on 1/8 lt at night, but the de-sats and heart rate were still an issue. So, I have him on 1/4 lt at night. Once his heart rate returns to normal and he no longer has the strange de-sats, I'll try him at 1/8 lt at night. My Pulmonologist was just a little too aggressive this time with the weaning. The last time she didn't want me to wean at all and this time she wanted him off O2 during the day. She even said that I could wean him off O2 at night over the next 2 weeks. So, MY plan is to get his sats and heart rate back to normal and then slowly wean from 1/8 day and night, 1/16 during the day and 1/8 at night, 1/16 day and night, 1/32 during the day and 1/16 at night, 1/32 day and night, 0 during the day and 1/32 at night, 0 day and night. I was planning on waiting at least 2 weeks between each change. Hopefully, we will be off O2 in the next 4 months.

Carver seen a pediatric eye doctor on Monday. The eye doctor thought that his right eye was slightly near sighted. However, he did not feel like glasses were necessary at this time. He didn't feel like there was anything he could do at this time for the left eye since the retina is only attached around the edges with fluid under the retina. He didn't think glasses would help the vision. Patching is also not an option since we want to encourage him to use as much vision as possible regardless of which eye he uses.

Carver has been struggling with feeds every since we got his Fundo Plycation and G-tube. He has a hard time getting anything (including saliva) down the Fundo. He gags when anything is put in his mouth. I feel like we have taken a huge step backwards with his feeds. We will see the surgeon that did the surgery on Monday.

I was able to wean Kinnick to 1/4 lt O2 day and night with no noticeable difference in her heart rate or sats. I'm not in any hurry to drop her O2 since she still has a stridor. We see Kinnick's ENT tomorrow to discuss the stridor and paralyzed vocal cord.

Kinnick's G-tube and stomach continue to be a problem. She's still leaking and has terrible gas in the intestines. We seen the GI doctor today. We are going to remove a couple of the meds (reglan and erythromycin) and see if the gas goes away. These drugs were added to help with motility, but could possibly be adding to the problem. If this doesn't work within a week, we are going to try another formula that breaks down even easier (EleCare). If this doesn't help, she will be scoped to search for a block. In addition to all of this, she has so much stomach acid that the acid is breaking the balloon on the G-tube about every 12 days. The G-tube should last 4-6 months. We are buying 2/month at $225 each. On a good note, Kinnick is doing fabulous on her baby food and juice feeds. She is easily able to eat a full tub of fruit or vegetables in a sitting and about 1/4 oz of juice. She's getting her full volume of fruit and vegetables in for the day. We'll continue to work with her juice via the honey bear and try to add some meat to increase calories. If we can get her to take more via the honey bear, maybe we'll be able to reduce the G-tube feeds. I can't wait to get rid of the G-tube.

Kinnick still has quite a bit of blood in her left eye from the surgery. We'll see the ophthalmologist next week. I'm hoping the blood is starting to go away. The blood can cause add'l scar tissue that will make the vision worse. If the blood doesn't go away soon, she'll need another surgery to remove the blood - I'm guessing that will have to be done in MI.

We have a High School graduation for Kirsten this weekend and an 8th grade graduation for Gregory on Wednesday. I enrolled Kirsten at WSU on Monday, so just waiting for the huge bill that will come in July. I enrolled Harrison in Football for the fall on Saturday. I even got my hair cut and my eyebrows mowed last week. As always, we are busy, busy, busy at our house.

I hope everyone had a wonderful Mother's Day.

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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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