Medicaid Insurance Denial for daily Med(Spinal Muscular Atrophy)

On Tuesday we got a phone call from the local Mom and Pop drug store after we had called in refills for one of Elizabeth's daily meds XOPENEX saying it was DENIED and the doctor had to get prior approval before she could get it. Okay.... dealing with something like this has been what has happened to us several times for things recently. I calmly told Christen(Lizzy's Mom) and she called the doctor's office and they said they would take care of it. So, after talking to out docs office and they saying everything is approved we went to go pick it up and the pharmacy said its DENIED still. Okay...... Lizzy has been getting this med since she was 17 months old. She is now 5 years old. This is a daily med what the heck is going on??? Called the doctor back and they said this morning after they got the approval they got a call back saying they needed a Letter of Medical NEED for it . So to get an LMN he has to dictate a LMN and transcriptions has to write it so it will be awhile to see if its gets approved. THIS IS A MED SHE USES DAILY!!!!!!!

Okay, I am so upset it is not funny. In the past month Lizzy has gotten all her equipment applied for with LMNS denied. IL Governor Blagojevich has used the money for special need children to fix our roads. That is totally wrong. I do not know what to do but I will find a way to get her what she needs.
She has been denied in the past 2 months:
1.) MANUEL wheel Chair(hers is too small for her(and also borrowed) and we do not have a way to push her in her power chair when she is sick . She can not sit when she is sick. No Adult controls)
2.) Adult push handle and controls for her power chair
3.) gel pads for her power chair arms (since the metal arms put bruises on her arms)
4.) Stander (we had a borrowed one until she grew out of it)
5.) a desk top for her power chair (so she can use it for school work)
6.) Had to get a prior approval for Carnitor a med Lizzy has to take every day and it took weeks to get it approved
7. Xopenex a daily nebulizer treatment

Okay Governor Blagojevich tell me how all this road work is more important than these children? You suck

Obama-wins!! This is History!! (Spinal Muscular Atrophy Type 1)

The people of the USA have spoken. They wanted a BIG change.
I (I am sure many others also did) sent letters to Barack Obama about the SMA Acceleration Act and if you look in the current NEW FSMA Directions magazine its in the legislative update he is a supporter of it.

He also has helped us with Lizzy as some of you do remember.

He is a great guy/American with vision. He cares about our kids and the American people. People all over the world are celebrating his win. As I am. He loves his family, He is religious , loves his country and HE LISTENS . We needed some one with family values and with a great vision on the way things should be.

So, many people wanted change, the polls showed and I think that is why Obama was made president elect.
Those southerners(People I know anyway) that are objecting about McCain are not people who can handle change and are very bias. They do not understand politics and are ignorant about what needs to be done to get this country back to the way it should be. What are they going cause another civil war? Get real people and grow up and face facts. The way our country was heading we were in big trouble. Lets just see what he does.
I studied political science for two years in college and learned so much and started listening and watching.

I think he will make these lazy families that keep having babies and do not work ACCOUNTABLE for their actions. The ones that abuse the system.

Plus, Sarah Palen in the White House? She might be a go getter but to put her in the White House when she could not even answer one question at the debate directly tells me she is not person for the white house if something was going to happen to McCain who showed many times his temper in public. She dogged Obama badly and lied numerous time.

Lizzy voted with us yesterday and told everyone she voted for Obama. I was in the kitchen doing dishes and she kept running back in forth saying " Nina they said Obama is going to win" . and "They just said it again!! "

Both my parents voted for McCain and they are not talking to me today. LOL They too do not handle change well and seeing in their eyes a" Black" as president is too much for them to handle. So...... its best I do not discuss this them for a very long time.

Lets just all see what he will accomplish in her 4 years.

I am not going to get into any more debates about this. Its over he won and I think its fantastic!!

When his office helped us with some issues with Elizabeth a few years ago I said at that time he needed to run for president because he CARES.

Congratulations President-Elect Barack Obama.

Vote - it is your right as an American (Spinal Muscular Atrophy Type 1)

Please vote tomorrow if you have not voted early. It is your right as an American.
This will be one of the biggest most important elections in history. We have the best country in the world!!
I will probably stay up all night tomorrow night until I find out who wins.

We are sending prayers to Barack Obama and his family. Sadly, he lost his Grandmother in her sleep last night.

Obama's office helped us when we were not allowed to fly a few years ago. Lizzy has a feeding pump and the airlines refused to let us fly because of it. We got a free flight(That we used to fly to CA for Lizzy drug trial also) and gas money for all the trips back in forth to Chicago(We live over 100 miles south) because of how they helped us and the feeding pump was put into a different category and we have had no problems since. His office was so great in helping us.

Lizzy is doing great. She had on Barbie shoes and turquoise knee highs socks today from her friend Lauren and thought she was something. She loves shoes and cool socks. She was driving back and forth from room to room today just having a great time. I should of taken a picture of her but I did get the chance.

I am sick sitting her with a face mask on making sure I don't get her sick again. I am sick. Went to the doctor today and I have a viral infection. I am so upset and hope I did not infect Lizzy. It is awful. I have this "Killer Cough" that will not stop. My ribs are so sore and of coarse I am not sleeping because I have been UP coughing all night long. I hate the hot breath blowing in my face but what else am I to do? Got to keep my girl from getting sick.

I am very upset about that family that was accused of child abuse and then the murder/suicide of the Mom and father . The baby passed way this past week. That has to be one of the hardest most heart breaking stories I have ever read.
http://behindthebluewall.blogspot.com/2008/11/co-officer-oshell-murder-suicide- update.html


No trip to Wisconsin tomorrow with me having a viral infection.

Many prayers for the sick kids and please say some so Lizzy doesnt get sick from me.

Again I remind you to vote tomorrow!!!!!

Things are better (Spinal Muscular Atrophy)

Lizzy did not alarm at all last night. (Yay and the crowd roars) Think we have it figured out. It was both bipaps. Hers and the back up bipap. Lizzy told me it was her bipap not blowing out right. We got another used bipap and all went smooth last night. Thank goodness. I still didn't sleep well last not wanting to hear that buzzer soon as a dosed off but tonight I will SLEEP. I was a Pulse ox watcher last night. Thank goodness Lizzy got to rest.
I am thinking that using it on the inverter on the plane might be why we are having so many issues .I am not sure but we are waiting to find out what is wrong.

Lizzy was Fancy Nancy for the church party(2 blocks away ) last night . She looked just like her favorite story book character. Fancy Nancy by Jane O'Conner. Lizzy has been a fan since the first time we read her the book.


Well, we got the terrible news the Prison here is closing Dec 31. That is so many jobs. They are trying to think of another use for the prison.
I am so worried about this community. I hope they will find another use for the prison. Its a huge building. They Governor is closing many State Parks also. This is so wrong. http://www.DanRutherford.com/ for more details. Our favorite IL Senators web-site.

No sleep yet again.. feeding tube clog and alarms(Spinal Muscular Atrophy Type 1)

Lizzy has been feeling great but darn it every-time she doses off on her bipap at night the her pulse ox starts going off because of her o2 levels drop. She drops for a second and then back up to 98-100 O2. I cough her, suction her and she is not having any problems. I change her mask , I am using her back up bipap , pulse ox probe change and I don't know what is going on. She says she is fine every time it wakes her up too. Right now she is sleeping off bipap 3 feet from me. Her O2 level is 98 and her heart rate is 72. She is sleeping so well. No alarms off bipap. What is going on?? This has been going on for days. We sent her bipap in to be fixed and have been using the back up and still we are having issues. Is that one not working right also?
I will watch the pulse ox and think all is well then soon as I start dozing off there it goes off again ...... buzzzzzzzzzzzzz. Its like you have been zapped in your brain. zzzzzzzz (chill up my spine just thinking about it) . Then when I did everything I can think of and finally got her situated turned her over again I had my eye on the pulse ox I happened to notice her G-tube was clogged (she is vented). I had to get the clog out and then try to get some sleep. Then, I was worried her gtube was going to get clogged again and it did !!! OMG!!!! I got up again and took and cut the end off a q-tip and cleaned out her G-tube and sure enough there was something lodged in there. She had alarmed 5 times last night for a second then backed up g-tube. Its like she is 2 years old again. I am not used to this. It all started with the bipap messing up after she had gotten sick.
She is no longer having illness related issues but what the heck is going on? I need some sleep. She is also not sleeping because of it.
Her O2 and heart rate are totally back to base line. Treatments are going smooth. She says she is not sick and feels fine.
Pray I get some sleep tonight!!

Better day (Spinal Muscular Atrophy)

Lizzy is acting better today. She is not so demanding today and cranky. This illness is a mystery
The DME gave Lizzy a demo mask and it works well for her. Only thing is Lizzy dropped a few times o2 last night while sleeping again last night. No air leaks NOTHING. I would cough her suction her and she was fine. I am not understanding what is going on. Her O2 and heart rate are great off bipap she has had no fever. I am concerned and don't know what is going on. We got a used bipap from the DME till Lizzy's gets fixed. They said I was right her bipap was not working correct. She seems to do better off bipap. Her treatments today went normal. No extra junk. Great air movement. She says she has a headache but that is all. She is on every three hour treatments so I am still NOT understanding if she sound good, looks good and does great off bipap what is going on. She is on extra Breast milk and pedilite also so this is really baffling me.

On a good note. Charlie and Sophia are released from the hospital. Sophia is on her way home. Both kids are doing great.

Prayers for Logan H he is not doing well. He has his air ways start to close and they don't know why. Many prayers to them

I went to curves for my 5th time this week. I am starting to feel great and feel lighter.

Have a great week-end

dealing with iIllness,docs, nurses and DMES (Spinal Muscular Atrophy)

PLEASE big prayers for Charlie and Sophia D. They both had surgery to today for their extension surgery for their backs.
Lizzy is doing ok BUT she kept alarming ALL last night! I coughed her or suctioned her and she would go back to 98-99 o2 . Her chest sounds GREAT. Great movement. It had to be the BIPAP. She is satting great with out bipap. I am not understanding what is going on. UGH Secretions/junk are thinner. Her Bipap sounded weird(Motor) so we had to send it in to get it fixed and they got us a used one which I just totally disinfected it . They said Lizzy's bipap was not working right. That was a hassle also. You have to call this person and then call this person to see if that person got the message. New Policy changes at the DME.....
Sorry my mood sucks today. No sleep last night .
Lizzy had started green gunk yesterday and TONS of secretions. Went through sooooo much bull yesterday getting her on an antibiotic She had low grade temp and/ is a total crab.
Lizzy's local doc was gone so the Nurse Practitioner ordered Lizzy ( You are not going to believe this one...... ) Freaken Robitussin!!! ... After I waited all day for them to call back with a script for an antibiotic. That is what they called and told me. Voicing my opinion got me no where. They know what Lizzy needs and they also usually always give us what we need for Lizzy. It took till 4:20pm yesterday to get that call.
I was so upset I called up to our specialists office only to get a recording from the number I used to call to talk to the nurse and it said they are "NO LONGER TAKING PATIENT CALLS ON THIS LINE" with no details only if you want to make an appt a number to call. I call Lizzy's specialist 's asst Lisa (she is a super great person)and she gave me a number to call. The doc on call called back and he informs me Elizabeth has what ever one else has and its not from the flu shot or she would of had symptoms the next morning after the shot. He was very "Dry" but called me in the script for Lizzy with no problem. It was such a frustrating last few days I already hate the season and its just started.
Lizzy is doing better tonight but is very cranky keeps repeating herself when you do not give her what she wants right now and will no nap today even though she feels like crude.
I did leave to go to Curves today so I did escape for an hour.

I know I am rambling. I think I am taking Lizzy to bed early and call it a night.
Any way special HUGE prayers For Charlie and Sophia.
Prayers for Lizzy and MJ too!!
Gosh I love my life some days!!!!!!