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What size serving of bad news would you like? Small? Medium? Large?

Posted May 14 2009 12:00am

We had our first appointment meeting today with the transplant nurse. Lovely lady. She truly was amazing and very easy to talk to. We thought today was going to be physical workup and such for BabyGirl, but it was more of a sit down informational meeting.

During our conversation, she got a call from our insurance. Good news is we have amazing benefits and finances won't be stopping us from the medical aspect saving my baby. Our financial trouble will only lie in loss of my income, relocating and co-pays. That's probably the only good news we got.

Bad news on UCLA. The contract between UCLA and my insurance company recently expired. We are now faced with 2 other hospitals, both in California. One is in Loma Linda and the other in Northern California. This scares me because just yesterday, Hubby's company was ready to move him to a branch 19 miles south of UCLA. NOW we need to put the brakes on their offer, which is petrifying. We don't know where we will go, and won't know for a few weeks until the medical teams there review the file and collaborate with our medical team. Once we find out where, we still don't know when. It is truly one step at a time. We won't know step 3 until we hit step 2.

I figure there is no good or easy and loving way to summarize the the information she gave us today. If I wasn't numb enough, they sure are making sure they are sucking the life out of me. I don't know how much more I can take. And that's an honest to God statement. I know it has been easily overused, for finances or stress or drama. But I HONESTLY don't know how much more I can take before the person everyone knew up until Tuesday morning is put to rest by this new person I don't recognize.

She confirmed repair surgery is almost a non-existent option. We learned that BabyGirl's condition, leaving it as-is, only gives her a lifespan of 5 years max. She reconfirmed BabyGirl is a walking time bomb, as are kids with Restrictive Cardiomyopathy, especially since we do not fully know the progression of the myocardial bridging. Transplant = lifelong struggle. She will undergo heart tissue sampling frequently post-transplant to test for rejection. This will taper off to be a once a year thing eventually, but in the early stages will be quite frequently. She will have frequent bloodwork done forever. She will be on medications for the rest of her life, lowering her immunity. If she stops taking them to rebel or because she is tried of them, she will not survive. There will be many times where we have close calls or false alarms due to the sensitive nature of her immunity. She will need to be constantly aware of sick people around her and avoid situations that may put her immunity at risk. She will almost definitely get sick with 2 very common strains of virus all people carry soon after the surgery, and I wish I could remember the names. She will be at high risk for the rest of her life for Cancer of her lymph nodes. She will almost definitely sustain mild kidney damage from the medications over the course of her life. She will almost definitely never be able to have children from her own womb, not only because the heart will be detached from nerve and not be able to adapt to her changing body, but also due to the medications she needs to take to survive. And the part I was not prepared for, she will face of life of multiple heart transplants. There are no steady statistics on how soon because heart transplants on children have only been happening for 2 solid decades. The nurse gave me examples of a boy who they treat who had a transplant at 1month old and is now 23, going to college and has been completely healthy. He was one of the first 100 kids to get a heart transplant ever. She also has a child who needed a new heart after just a few years. Rough statistics for survival rate are 75-80% for the first year. Then of those 8 out of 10 kids that do survive post-transplant, 75-80% of the will see the next 4 years. Over a 5 year period, the survival rate is 64%. To me that seems 100% unfair and unacceptable.

Is that it in a nutshell? Probably not. I would welcome a nutshell right now. That's it, in its sickening, confusing and wrong reality. I know God has a plan, He will be our strength and healer, He has a reason we will never know, etc etc etc. But you know, that's not really all that comforting right now. I am prayerful, and beg everyone to pray for her healing and future. But even that gives me no peace. This will never be a distant memory. It will be a struggle for the rest of her life, and if that not be longer than my own, the rest of MY life.

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