Insurance Not Making It Affordable!!!

     For the last 7 years I have had it easy being a Prophyholic HemoMom.  My ex-husband had great insurance!  When it was time for Marques (8) to get his port, I didn't think twice about it, getting his factor or at the time having nurses come out to the problem, we paid nothing out of pocket.  I knew not having "good" insurance was a problem for some hemophiliacs like my Dad, so I was grateful for the insurance my ex-husband had. 

     When I had Laithan and Layla (1) with my current husband, he did not have any insurance.  He was working a temp to perm job at the time, so we were hoping he would get hired before I had the twins.  Unfortunately, that didn't happen so I tried applying for Medicaid but was denied.  Laithan's first few hematology appointments I still owe for today....Luckily, Baxter had a free sample program so we were able to get 6 doses of factor free.  I just prayed we wouldn't need them or it would last us until we had insurance.
     After some guidance from the Hematologist Clinic Social Worker, I was able to find a program in SC called the Child Rehabilitative Services (CRS).  They provide free blood products and supplies to children with Hemophilia.  When we were approved for that program, I was jumping for joy and proud of myself for researching, driving down to the health office, completing the paperwork and getting approved.  Finally, when the twins were 7 months old my husband was hired permanently and we finally had insurance.  The insurance now paid for the Dr. appointments, but I was still getting the factor through CRS. 
     After thinking, "okay I have this all under control!" My ex-husband has decided to move closer, which means that Marques no longer has the "good" insurance.  My ex-husband job has a co-pay for the factor which will cost me about $200 month (so funny, UPS just rung the door bell to deliver it).  Still, I know for some families they pay more than $200 month, but since I am now a stay-at-home Mom I don't know how to stick this $200 in our budget.  However, I do know I can get his factor for free like Laithans.  I will be going down to my County's CRS and adding him onto the application.  I also now have a co-pay of  $65 to see the hematologist verses the $10 and $130 emergency room co-pay verses $50.
     Thank you to all the hemophilia health advocates, hemophilia associations and families that fight for these state programs!!  I am now dealing with the true realities of how expensive being a Prophyholic HemoMom really is.

First Day Of Third Grade!!

First Day of School Picture
     Well, we made it through a great summer break.  Marques (8) is going to be hard to break out of the TV routine, he became accustomed to over the summer!  He went to sleep concerned about starting third grade and going back to school.  I assured him it would be great and not to stress, because last year he woke up with a gray hair.  It was the craziest thing!  Well no gray hair the first day of school for either one of us.
This year I was prepared with my Teacher hemophilia information booklet, my hemophilia information sheet from the Hemophilia Treatment Center (HTC) with their information and the school medical information for the nurse. 
At the open house, the night before, I gave the information to the Teacher and asked was she aware that Marques had hemophilia.  She informed me, she was and the nurse had already discussed it with her.  Surprised, I asked her if she had any questions and she said, "no" and didn't look too concerned.  I did let her know that Marques had to wear his helmet at recess and gym. 
     I know some mothers don't require their son's to wear a helmet.  I went to a hemophilia event years ago when Marques was 3 or 4 and some of the Mothers were against it.  I choose to have him wear it because his first major bleed was a head bleed, from falling from my bed when he was about one.  After that, he had another bleed in the same area and there was no accident.  I am very paranoid about that area.  I know at 8 years old and almost 5 feet tall, he is not thrilled to wear a thick blue helmet.  Since he has worn a helmet all of his life, it is still normal to him. 

     The first day of school is a little difficult for Marques.  He has new people in class asking him questions about why he needs to wear a helmet and what hemophilia is.  After that though, his friends start making sure he wears his helmet to recess and gym.  I am almost ready to let him stop wearing it but before school ended last year the nurse literally called me everyday regarding Marques falling, hitting his head or running into someone.  The week finally ended with me picking him up from school with a busted lip, scratched forehead and knee.  Thank the stars he was wearing his helmet, because it could of been worse.  I told him, when I feel he's calmed down a bit as he gets older, he can stop wearing the helmet.
     So anyway, Marques went off to school and I was off to take Laithan (18 mnths) to the HTC for a followup regarding his abscess (see previous post). While I was there my cell phone rings and it is the school nurse!!  (Yes, I have her number in contacts!!)  OMG!  I am thinking,  "already....the first day"!  The first thing she says is "He's okay, nothing happened, he just came to see me so I could call you and let you know he forgot his helmet."  "He said he would be careful and take it easy outside playing."  How cute is he and how mature he has become to want to call and let me know. 
     Later that night as I am giving him his wednesday prophy treatment I ask,  "So how was recess and did you take it easy." He said "Yes, I just played basketball," and he looks at me and smirks!  All I could say is, "Go put your helmet in your book bag!"

Mistaken bleed

     I started this blog thinking I would not have enough content to even write about a bad bleed episode; but it was almost as soon as I hit the publish button on my last and first blog trouble began.....

     My husband and I noticed that Laithan was really fussy and kept trying to get something off his back.  I rubbed his back, wiped it with a rag and check it out to see what he was trying to get off.  I didn't see anything, but what ever it was kept coming back.  A few days later, I was changing his diaper and noticed a "bruise" right on the split of his butt cheek...ouch!!  Okay, so that is what has been bothering him and what he was trying to wipe off.  The "bruise" didn't stop him from playing or walking, but it was uncomfortable for him to sit down to eat and to get his diaper changed.  I gave him an extra dose of factor.  I did notice a drop of blood, however I couldn't tell where it was coming from.  I even held ice on the area a few times which he kept trying to hold himself..too cute.

     Then on day, I'm cooking dinner and I hear a fall and Laithan is crying, when I turned around  he was holding his butt.  The tears started rolling and he was crying loud, so I knew he must of fell on his "bruise".  As I picked him up, I heared another splat and his twin sister Layla was lying on her back....apparently she poured juice on the hardwood floors.  (It's funny how you respond differently to each child taking the same fall) 

     It was factor night anyway, so I decided to give Laithan two boxes because now the "bruise" was red and he would not let me put him down.  Then, I noticed he was very warm....which is not good when your child has a port (could be a sign of a line infection).  I started feeling everyone in the house, hopping that someone else would feel warm as well; no such luck. 

     After coming out of denial, I took his temperature and it was 102 degrees!!!!!  My husband was still in denial, just telling me to give him Tylenol and wait to see how he feels tomorrow before calling the doctor.  I knew better!  After dealing with a line infection with Marques (8), tomorrow would not make a difference... and everything I went through to get this line in.....I refuse to loose it. 

     So now on top of dealing with a "bruise" on his butt, I had to deal with a line infection in his port....did I mention we were trying to go on a vacation in 72 hours!!  Speeding up the story...when we finally see the emergency room doctor he looks at his "bruise" on the butt and says it's and ABSCESS!!! 

Laithan playing in hospital play room.

     Bingo..hence the reason for the sudden 102 fever, which mysteriously went away with no medicine before we hit the emergency room.  How in the world did he get an abscess!  They drained the abscess and took blood cultures from the port and admitted us into the hospital.  After 3 days on anti-biotics it was confirmed the abscess on his butt was positive for MRSA but the port was clean....thank the Lord.  I am totally at a lost about how he could of got MRSA.  The nurses kept telling me they have seen it a lot lately.  They said it could just happen from an open scratch in that area. 

     We were released from the hospital giving me 20hours to pack up 6 people to get ready for our 3 day beach vacation.  Laithan has to stay on anti-biotics for 10 days and get factor everyday until the area, where they drained the abscess, heals so Prophyholic HemoMom will be very busy!!! 

Prophyholic Hemo Mom

     No, the term prophyholic does not exist....yet.  I just made it up as I began to think about what I wanted this blog to be about.  I did not want to base this blog just on problems I encounter raising hemophiliac son's because I would not have enough content (knock on wood and praise the lord).  That led me to think about how much easier things are because both of my son's are now being treated prophylaxis.  I guess I need to define a couple of things before I continue:

    Hemophilia - a rare inherited bleeding disorder that causes prolong bleeding and easy bruising.
    Prophylaxis - (commonly shortened to prophy) Prevention of or protective treatment for disease.
     I have two son's that have severe hemophilia A, Marques who is 8 and Laithan 18 mnths old.  Marques has been on prophy since he was 16 mnths old.   He fell out of my bed (what a heart break that was for me...I'll discuss in another post).  Laithan just started prophy this March because he started having horrible spontaneous bleeds in his shoulder and hip.

     So, three times a week I get my assembly line together so I can factor them up.  Now, because of being on prophy I know I am avoiding them from being in horrible pain as well as improving thier long term health.  I've seen the pain my Dad experienced from target joint bleeds and how it crippled him.  I do not want that for my sons....therefore I am a PROPHYHOLIC - dependent upon regular infusion therapy to prevent and protect hemophilia from impacting my sons' life!

Marques listening in on Laithan and Layla

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