A TUNE UP FOR THE BIG DAY!

We took Lydia in for a cat scan and her clinic appointment on Thurs.  She got a fever after the cat scan so Dr. Book decided to admit her for a "tune up" before the transplant.  She has had a cold so they tested for viruses.  They also tested her belly fluid for infection to make sure she is healthy for the transplant.  The tests all came back negative so she came home on Sunday.  I'm so grateful that most of her hospital stays have been relatively short.  I am grateful for the great care and precautions that Dr. Book takes to keep Lydia as healthy as possible. 
The transplant is scheduled for Wed. April 7th.  Yeah!!  We are almost there.  Of coarse I have my moments of worries and fears, but most of the time, they are outweighed by my excitement to get Lydia on a better road.  Brian has been a great to comfort me when I'm feeling down about it.  We have been blessed immensely through our hard times.  I know that Heavenly Father knows of our needs and will continue to bless us as He has thus far.
He has blessed us with so many people who have been our ministering angels over and over again.    Several family members and neighbors have helped us many times even before we anticipate or ask for help.  The friends we carpool with to school have happily driven for us many times when it was our turn and have tended our kiddos often.  I couldn't have asked for a better visiting teacher at this time.  She has cheerfully been there to tend, bring meals and treats, visit at the hospital, and give timely messages that lift my spirit.  Brian's mom comes to our house to teach Spencer and Alyssa piano lessons, help with homework, be a chauffeur, and do whatever else we need help with.  She is a great example of service and love.  My own mom has been my dear friend through all of this as well as my right arm.  She is constantly doing our laundry, cleaning our house, tending, going to appointments with me, and also serving the many other people in her life(She has 10 children, 25 grandchildren ages 11 and under and is in the R.S. presidency).  She seems to have twice as much energy as me and a heart overflowing with love for the people she loves and serves.  She is amazing to me!  I love her so much!
Thank you to everyone for your love, service and prayers. 

Financial Crisis is Over

It is now time for the insurance story.

Last night I got a phone call at 6:30 from the appeals manager of Blue Cross and Blue Shield (BCBS). She said that they are going to approve our appeal to be covered at $500,000 for the transplant to be done at Primary Children’s. I cried for an hour as I called Janene and our family to tell them the news. I am crying right now just writing this blog. Those that know me know that I can cry in Star Wars let alone every cry or non crying movie there is.

For those that don’t know the story. Last year BCBS covered us for two million dollars for the transplant to be done at Primary Children’s Medical Center (PCMC). This year the company I work for, NexOne, switched insurance plans inside of BCBS to a different plan. My company and the employee’s were told there was not much of a change between policies. There happened to be a major change with the maximum for transplants. Instead of two million dollars maximum coverage we had a maximum of $250,000 if the transplant was done at PCMC. That $250,000 includes the 90 days after transplant then Lydia’ coverage goes back to her regular out of pocket maximum which is already met for the year. We found this out about two weeks ago. We have been in a panic since. PCMC estimated the transplant to cost about $262,000, plus the last three years of transplant patients at PCMC have used anywhere from $17,000-$105,000 in the post 90 days of coverage. If you do the math, that is a bad deal for us. PCMC has a Medical Aid program that would help cover they said around 75%, but that still leaves a lot of money left over plus the anti rejection meds costing a lot each month the rest of her life.

BCBS has Blue Distinct Centers for Transplants (BDCT) that they cover $500,000 for transplants. The closest BDCT that we could go to for a living donor transplant is Stanford University or The University of Washington. The issue with going to a BDCT is that the post care for the 90 days has to be done at that same BDCT. Every way we looked at that issue we could not see a possible way to have care enough for Janene and Lydia out of state with me having to work and the rest of the family to take care of while still in school. Also, after this current episode at the hospital Dr. Book said that she is not fit to travel.

The reason that we only found this out two weeks ago is that the BCBS policy is new this year and the information was not scanned in to the computer system for transplants for the customer service department to tell either I or case manager at PCMC.

We sent in an appeal last Friday morning. The appeal had a two page letter from us, and a letter from Dr. Book. Because of the hospitalization of Lydia this week we talked to Dr. Book on Wednesday night about the insurance problems and the next day she wanted the phone number of our case manager at BCBS and said that she would not stop talking until she got to the top. Obviously she got to the top.

I know that God works in mysterious ways and uses people without them knowing. This was a miracle. I feel that Lydia’s hospitalization, as fun as it hasn’t been, the prayers of many others, and Lydia’s name in the Temple helped inspire those that could make the difference to act and decide correctly. We thank you all for your fasting, prayers, and help.

Lydia is stable now. Dr. Book is waiting to release her when she can keep her meds down. They took the feeding tube to her stomach out because it was part of the bleeding problems in her esophagus. So far Janene has said that she isn’t taking the meds by mouth good. Hopefully they will figure out what will work soon. I will be taking over the weekend shift tonight.

The good news is that now the transplant will be on April 7th for sure. We are excited to see that the fixing can finally begin. Even though it will be hard on everyone especially Lydia, and Janene, it will finally put us on the road to the best life as possible for Lydia.

Back Again

Tuesday night Janene and I were having a nice conversation right before we went to bed. We were discussing if it was possible for Lydia to not have to go to the hospital again before the transplant. That was the wrong topic. We heard Lydia through the monitor in her bed throwing up. I ran in there to with a cup to catch the thowup. I turned on the lights and I saw a bunch of large blood clots all over in her bed. Naturally, that scared me. I could tell that it was throw up instead of her pic line just because it was all over her face. We called Primary Childrens to tell them we were comming. Lydia was fine after she got it all out. We were able to clean her up call a neighbor to come over to wait for Janene's mom to come watch the other kids overnight.

When we got to the emergency room we put her down on the bed to rest while waiting for a room. She started to throw up again large blood clots. I was the only one in the room because Janene step out to use the bathroom. I had to yell for someone to help me while I was trying to catch all the blood clots in my hand. We got her all cleaned up and they sent us to the ICU. She was as happy as any baby is in the hospital(not very happy for those that didn't understand my joke). All she wanted was water and ice chips.

The next day they did a scope on her stomach. They found that she had broken many blood vessels in her esophagus. They fixed the big blood vessels and took her feeding tube out to let everything heal. They are going to try to just do all the feeding through the veins and let her just drink liquids and take meds by mouth. Hopefully she will take the meds by mouth. It has been many months since she did and she usually threw them up after.

You know the old saying when it rains it pours. It did. As they came to get her to do the scope, I got a phone call from my sister-in-law. Parker was playing baseball with his cousin and got hit with a bat. The bat boke the skin under his eye. They took him down to the clinic to get it glued after some x-rays.

I am not going to go into the phone call the was with the insurance company to find out what clinic was covered by our non-insurance, I mean insurance, that my sister-in-law could take him to get that fixed. If you get my hint we are haveing a lot of trouble with our insurance company now. That is for another day.

Now back to the other story. Lydia is doing good. She will be in the hospital most likely until Sunday or so. I will take the weekend shift on Friday night.

As for now the doctors are planning on the transplant comming April 7th. As bad a problem as the insurance company is giving us we may have to suck it up and take the costs. Lydia is declining and the transplant needs to be very soon. I am looking at every possablity that I can to remedy our finacial problems that this will cause.

Stay tuned for the insurance company story. I don't know when I will have enough energy in my fingers to type that long and drawn out painful, timetaking, unfortunate, etc, etc, etc story.

Alyssa

This is my sweet Alyssa!  She turned 9 in January.  Oh, she is growing up too fast!  But the more she grows the more I love and appreciate her.  From the moment she came into our family, she has been a delight and blessing to me and Brian.  She has a very gentle, sweet temperment.  She is a snuggler and a cuddler yet she often quietly sits back and waits for it instead of being the "squeaky wheel" like some of her brothers are sometimes.  I often worry that I am not fulfilling her needs enough because she is so willing to help take care of the needs of others.  She is often unselfishly doing things for others.  She loves to write notes and give treats to those she loves.  She easily shares with others.  She is the peacemaker in our family.  Whenever she senses contention, she jumps right in to try and do whatever she can to make peace.  She loves reading, animals, her Kaya and Chrissa dolls, doing crafts and art.  She is a great artist!  These hobbies are so opposite of mine since the time I was little, but I do love to read to her and color with her now.  I sometimes wonder how I was so blessed to be her mother instead of one of my sisters since these were things they enjoyed when they were young also.  However,  Alyssa does like to swim, put on my make-up, do hair, go shopping with me and help me cook which are some of my hobbies.  Alyssa is a great student and really enjoys school.  She often recruits her brothers and/or the neighbor kids to play school with her in her free time.  She says she wants to be a teacher when she grows up.  She would be an excellent one.  She is a great piano student as well and seems to enjoy playing.  I enjoy listening to her play.  I love my Lissie!

Alyssa was asked to do a singing/speaking part in a  our stake Relief Society Birthday meeting last Thursday. I was very glad that she readily accepted even though she gets nervous talking in front of groups (she gets that from me) as I believe that it builds character to do hard things and it's important to share our talents. She has a pretty singing voice (she gets that from her dad) and she is a great memorizer.  She did an excellent job.  The skit included about 15 ladies from our stake along with Alyssa and one other girl all telling about counting their blessing in the midst of adversity.  Alyssa sang a primary song about being thankful, then she said, "I know that my Heavenly Father loves my family.  He has watched over us, especially this year, while my baby sister has been sick.  He has heard our prayers.  He has helped us feel comforted.  We are more grateful for each other than we were before.  All the things and all the money in the world are not as important as our families and our faith in our Heavenly Father.  Count you many blessings.  Money cannot buy your reward in heaven nor your home on high."  Our stake R.S President and another sister in our ward wrote the script.  I feel like they expressed beautifully how our family has been blessed during Lydia's health problems.  My family is definitely my most important treasure on this earth!

I'm a match!

I had my last consultation for my living donor workup today and everything looks good for me to be the donor.  The doctors have been talking about a possible transplant date for somewhere in the first part of April.  Brians work changed insurance plans at the first part of the year and we just found out that our transplant coverage is not at all what it used to be if we do it here at Primary Children's.  We are trying to see what we can do for financing.  If we can get this figured out and if Lydia and I stay well, it sounds like we will be at our big crossroads in this journey in about a month.  Wow, this feels rather surreal.  Despite the bumps in the road that still lie ahead, I have felt Heavenly Father's spirit alot over the past few days assuring me that it will all work out o.k.  I know that He knows me and Brian and each of our children personally.  I know He loves us, is aware of our challenges and is helping us through them.  I am so thankful for His love and His tender mercies.  I am so grateful for my good parents who have taught me of His love.  This has certainly been the most challenging year and 1/2 of my life (so far) in many ways, but it has also been a time of tremendous blessings.  Many of which have come through so many of you, who are angels to us.  Thank you to all of you for your continuous love, service, and prayers!  We love you!