Round Two: Our prayers have been answered regarding
Mariah's surgery!
Two days prior to
Mariah’s scheduled surgery on September 18th to implant an
ICD (implantable
cardioverter defibrillator), we received a phone call telling us
Mariah’s surgery was cancelled. Our insurance company was refusing a
preauthorization for the surgery, stating it “
wasn’t medically necessary.” Uh, yeah, right! Big Joke! A surgery to help preserve the life of a 17yr old
isn’t medically necessary?!? Wow. I wonder how a person can determine that and sleep soundly at night.
Since
Mariah's pediatric
EP was on vacation until the day she was supposed to have surgery, we had to wait for him to return to the office to appeal the denial with the insurance company medical director. The afternoon of Tuesday, September 23rd was filled with numerous phone conversations between myself and the
EP's office. The first call the
EP indicated he didn’t have a huge amount of hope of our insurance approving it due to this company’s reputation. He said our insurance company is notorious for being very difficult to work with. He advised us we had a couple of options, but none as definitive as this surgery and device that will protect
Mariah’s life...we could pursue genetic testing (25-30% who test negative still have the disorder, the genes causing their
LQTS just haven't been identified), waiting until she looses consciousness on the insurance’s terms, etc. The
EP said he would contact our insurance company’s medical director and if we
didn’t hear anything within the next week, to call him again to see if any progress had been made in the
appeal. I phoned
Mariah at school and left her a voicemail to let her know the status of things and just told her to hope and pray ~ as she had been anxiously awaiting any news. What was meant to happen would happen. Less than an hour later, I received a phone call from a person in the office who said “we have a tentative, unofficial approval for surgery” but we needed to wait until it was official. Approximately 10minutes after that phone call,
Mariah’s
EP called me directly and said, “we have an approval, our office will take care of all the details and you don’t need to worry about anything”. It is now scheduled for October 6
th. A good source of information can be found at:
http://www.sads.org/Please keep
Mariah in your thoughts & prayers for her to have continued peace about the decision to have this done and that she will heal quickly. She really has a great attitude about it and
doesn’t seem concerned with the scarring and bump this will cause. She has chosen to have it placed under the muscle which has a more uncomfortable recovery but it will have increased protection and will be less
noticable. A person we’
ve become acquainted with who has an
ICD generously offered to have her photographer husband take photos of what her
ICD area looks like and it was helpful for
Mariah to see this. This lady is the same height and weight as
Mariah so it gave her a very good idea of how her body could appear after it is all healed.
Mariah wants to spend the night before in Portland to avoid having to wake up at 2:30-3:00am the morning of her surgery (she’s a typical teen with how long it takes her to get ready in the morning...). As long as there is a room available, we hope to stay at the Ronald McDonald House the night prior to her surgery and have a room there until she comes home (for Steve & any of the kids that stay up there ~ I will be staying on a cot in her hospital room with her). We were told to expect at least a 2-3day hospital stay, depending on how well she does.
Mariah and I were talking about her surgery the other night and she is actually “excited” for it. Not excited to have surgery and all the recovery that will be involved, but she’s “excited to have peace of mind and know I am protected all the time.” She told me it will relieve a lot of the worry she has day to day and I realized that even though she
doesn’t speak of being worried about her heart very often, it is definitely on her mind a lot. She said she’s thankful for her dad and I allowing her to make the majority of the decision about it. She told me she is glad she could finally take control of something regarding her health, since so much has always been outside her control. I was in tears when she said, “you know mom, if something happens to me before I have my surgery or during my surgery, it will be God’s will and I’m okay with that”. I continually learn so much from these children. God is amazing.
Thank you for keeping
Mariah in your thoughts and prayers. She is such a blessing and we just wish her complete peace and quick healing as she goes through this surgery and recovery.
>McKenna< >Mariah<
Below are all three girls showing their completed hairstyles.
The above photo is from Mariah's 2008 school formal. Once again, I had the wonderful pleasure of being a chaperon (with Mariah's encouragement and approval). The evening was so incredibly wonderful. The private school she attends doesn't typically have dances at the formal. Instead, they have a wonderful formal dinner. This year, there was a parent sponsored dance after the formal dinner. It was the most amazing thing. The dance was a traditional ballroom dance, complete with dance cards. Many of the students participated in appropriate dance etiquette and ballroom dance lessons for several days prior to the formal. The dance etiquette included instructions regarding not filling their dance card with the same person more than several times. It was the sponsoring parents who also helped discourage exclusive coupling during the dances. I can honestly say that I have never been to a dance (including all the dances I attended while I was in school) where the students had this much fun!
Miranda continues to love school, enjoys reading and says she will always be my baby girl. She is such a sweetie and blesses us so much. At the end of school she received the "Highest Scholastic Achievement Award" for her 2nd grade class! In November 2007 we discovered she needed glasses. She looks so sweet in them! About two weeks ago, she took them off and placed them on the fish tank. It didn't take Josiah very long to locate them and test the strength of the ear pieces. Unfortunately, they didn't stand up to Josiah's tests and he ripped the ear piece right off. Thankfully, they were still under warranty and have since been repaired! Below is a photo of Miranda in her new, fashionable specs:
This final photo is of Josiah (the white plastic sheeting behind him is the girls' homemade 
We had yet another hospital stay in our family this spring. I'm beginning to think we should be eligible for our own room....with our name on the door at the hospital! =) 
