Thursday, May 14, 2009

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

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.

20 comments:

Anonymous said...

OMG Kristi-I'm in shock. I have tears in my eyes for you all, and prayers forever for you. I'm soooo sorry!!

Luv you all!

Katie

Corey~living and loving said...

oh Kristi! I am just in tears for you. It is just too much. I wish I had something helpful, and meaningful to say, but I don't. I am just in despair for you and your precious baby G.

Emily said...

Kristi, again, no idea what to say......there are no words!! God must know you can handle this, it doesn't seem fair....I'm so sorry :(

Megan@SortaCrunchy said...

Oh, Kristi. I wish I could be there with you to just wrap my arm around you and cry with you. I cannot even comprehend - just cannot wrap my mind around all that you are trying to digest right now. I just don't have any words.

Praying . . .

Ingrid said...

Kristi, I am hurting for you. I truly am. It is devastating news.

At the same time, there are stories of triumph over adversity in these situations. I do not know if you remember her, but one of our BBC Jan 05 friends, Jill, is a heart transplant recipient, who had been told she could never have children. She has two beautiful kids now. I have been thinking a lot about you and wondering if you'd like for me to reach out to Jill (she's on my Face Book friends) on your behalf, so you can hear from somebody who has lived through this. Do let me know.

Many, many hugs.

suzy2110 said...

Kristi, there are no words. We all love you and your beautiful daughter so, so much. We are all here for you, now and for ever.

BlueHeaven said...

My heart hurts so deeply for you and I am so sorry for all the pain you are going through. There are no right words to say that will comfort you right now, but please remember GOD hears all prayers. Please let me know what I can do,I want to help in anyway that I can.

xfevv said...

Kristi,

I'm so sorry to hear that you guys are going through all of this. You and Paul and your daughter will be in my prayers.

Obie

Anonymous said...

Kristi- I don't know what to say. I ache for you, I really do. I'm so sorry, this just seems unfair. You will get through this, you are a fantastic mommy! I will be sending many prayers along the way, for the family and sweet little G!!!!

Love, Jenny xoxo

Noah said...

Oh Kristi, not the news you wanted. Lots of hugs and prayers. You are an amazing mom and you have a very strong willed little girl and I know all your good qualities will get both of you through this. I don't know how a parent is supposed to deal with news like this, but I think you are doing amazingly well. I think I'd be a nutcase at this point.

Is there a way you can appeal to your insurance to cover care at UCLA? I know in some situations there are routes. But I will pray that you end up in the best possible facility for Gabriella's transplant. I know God has his hand in this all, even if it's hard to understand why or what.

*hugs*

Anonymous said...

Oh Kristi,
Im so so sorry, all this is just shocking.
Continued prayers, please let me know if you need anything.
Cheri

Julie said...

Kristi,

This is Julie...I have heard about Gabriella's condition, and I really want to help you..the doc I work with is a congenital cardiologist, and he is the only one in our group and in this area who has this specialty...he used to run the congenital cardiac clinic in Canada, where he is from...I really, really want to talk to you...please send me your cell# and I will call you..my work addy is jkuchar@prairieheart.com or julesk528@comcast.net at home..I am anxious to reach you.

DWL said...

My prayers just go out to you. There are just no words I'm so hurting for you family. (((((((((((HUGS))))))))))

Berta said...

Kristi -
Came by your blog by way of Corey's! I'm so sorry to hear of this challenge in your life! Wanted you to know that a network of family, friends and strangers are here to support you in any way we can! God bless your team of doctors, your daughter and your family and we're praying for success in finding a solution to this difficult challenge.

We'll check back often to see how you're doing. Know that people everywhere CARE!

Heather said...

Kristi, I love you and Paul so much!! I am praying and hoping for comfort for you both. You are such wonderful parents and I know you are doing everything and more that you can for Babygirl! I wish I could be there to give you guys big hugs! Know that I am thinking of you and your family! I love you guys!!! xoxoxoxoxxo

Heather Tenny

Marla Taviano said...

I'm so, so sorry. Praying for you! Asking God to hold you close and comfort you. I can't even imagine your pain.

Elizabeth said...

I came here from Megan's blog and I want you to know that your little girl has been on my mind throughout the week. I am in prayer for your entire family.

Mary Ellen ~ Carolina Momma said...

I'm so sorry Kristi. There are no words, just know we're wrapping you all in prayer ((hugs))

Anonymous said...

My aughter made me aware of your situation. My heart breaks for you-the shock of those words terrifying. You will be in our prayers. My grandson is 17 mo old and awaiting a transplant. My daughter went thru the same thing at UCLA and our OWEN had to go to San Francisco area to Stanford due to an antibody condition. The shock will wear off, but you have a very strng mommy heart and I have been following many heart baby blogs and I have seen miracle after miracle. We sure would all like to wake up and this was a nightmare, but your baby girl is your baby girl forever and the prayers across this country will help you through.. Rigght before I read your blog, I was upset and feeling that it isn't fair and it isn't, but I do know that you will be upheld by God and all the family and friends who love you.
Owen's Gramma Vicki
My daughter's blog:
simmonsfamilyupdate.blogspot.com

Jina said...

Hello my name is Jina Gorman, I also have a daughter Penelope at UCLA awaiting a heart transplant she is 2yrs old. We have be at UCLA since Aug 4th, we are also from Arizona. I would love to meet you and you daughter. Here is my email jinagorman@gmail.com please see peenys page to if you would like to read our story. Facebook: Pray for Penny Gorman
I will keep Gabriella in my prayers everynight

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