Thursday, December 17, 2009

Liver Failure

Getting some loves in with Sleeping Beauty

The vanity of this girls mother...

PaPa Bear

Tabby, Leslie, Hallie & Chantell (missing) came up for some delicious hospital food. Great laughs were had and I forgot for a few moments what was going on in my life. Thanks ladies.

Great Aunt Mary Jane,(PaPa's sister) a frequent visitor and special friend to little LuLu. London even let her borrow a bow for this picture.


A lot can change in a weeks time- and it has. Without including very many details we are now at the top of the list on the UNOS registry (United Network of Organ Sharing). We went from a score of 12 last Thursday to a 40 today. The scoring goes from negative numbers (meaning healthier livers) up to 40 being the highest/most urgent for a transplant. So, there is a chance we could get an offer at any time. Her kidneys have been taking a beating and the little beauty is very uncomfortable. There has been talk of dialysis but we are hoping with medication changes they will turn around a bit on their own.

London's team doesn't feel like James's liver size is going to be a good fit now that there is such urgency. So they have resumed testing with Uncle Jordan in hopes he may be a better match with a smaller liver. His willingness is incredible. James has felt the same blow I did when I was told I couldn't donate. The same blow my sister Cyd did when she was told she couldn't donate. He was so ready to do this for his girl. He hasn't been completely ruled out but are putting him on hold until they check Jordan out completely tomorrow or possibly wait for a "good" offer. This is a roller coaster, to say the least.

Dr. Book is hoping for transplanting next week if Jordan is a good match or anytime day or night if they accept a cadaverous liver that becomes available. As I've said before- very mixed feelings. The best offer would be a compatible liver from a baby and it is incredibly hard to think of another child dying in order for mine to live. I have the utmost respect for parents that make that decision to donate in their darkest hour. I know without hesitation I'd now do the same, God forbid. It's a hard thing to think about- but think about it yourselves and what you'd want to do if you ever found yourself in that situation. One person can save up to 8 different lives as well as dramatically improve many others.


For now I must get busy making preparations for Jonah, who will be floating around the valley for weeks following her surgery-as he has been this last week and every other hospital stay we've had. I want for him to feel as secure and special as possible as James and I wont be around much. This has been hard on him too. When Jonah woke up last Thursday to no Mum or Lulu in the house, James quickly told him I was Christmas shopping rather than at the hospital which he was very happy to hear. So he thinks I've been shopping for a week straight which he's been very pleased with until today- he told me to stop shopping, no more presents. He wants me home. Other than this little white lie, we have been very open with him and he knows quite well whats going on. The other day our friends, the Woods had him and here's how a conversation went:

Gavin: Jonah, what do you want for Christmas?


Pause, hesitation


Gavin: Do you want Transformers?


Jonah: Yeah, Transformers....


Gavin: What does LuLu want for Christmas?

Quick response

Jonah: She wants a liver, cause hers is dirty. They are going to cut her open- take out her dirty liver and put a clean liver in.


Bless his 3 year old heart.


I've never put it in such words, but the boy is smart. Gavin was blown away. Although I had been training him to say what he wanted for Christmas was a liver for LuLu, hence the delayed response. Maybe he didn't realize he had any other options. I will be sure to get him a Transformer.

We are nervous and excited right now and pray for the safety of London and her potential living donor as well as families that are having to let go of their loved ones and sparing the lives of others.


By no means is this road going to be easy but it will be the start of a better life for London. I can't wait until she has the desire to eat. To crawl. To walk. To talk. To one day dance. Cheers to modern medicine.

24 comments:

Julia said...

Hugs, loves, prayers, and kisses. It feels so surreal that the time has come. Love you, Baby Girl.

xoxo

Aunt JuJu

Mister Noo Noo said...
This comment has been removed by the author.
Cydnee said...

Well said, Lizzie Bug. May a nice, petite, CLEAN liver come Lulu's way. What a great Christmas gift ;). With a new liver, she can be Jonah's human transformer

Jamie N said...

Wow. Our thoughts and prayers are with you - as always - but will be in particular over the coming days and weeks.

This may sound crazy, but we would love to take Jonah for as much time as you'd need. I'm sure you have a million people to help, but we really would be happy to help with him. I'm sure by the end of his stay with us, he and Annie would be madly in love. Also, we live in Milcreek, so it may be a convenient place if you guys are up at PCMC so much.

Of course, no pressure, but we really would love to help if you need and feel comfortable. We would be honored to have little Jonah for a bit. Like I said, no pressure, but the offer is out there.

So much love to you.

Dale Rex said...

We love you guys and are praying and thinking about Lulu. Let us know if you need anything.

A and B Circus said...

Sweet Lizzie,
Although we all want to lift you up in some way, you continue to lift us. We are glad that we will be in Utah soon to help in any way we can. WE LOVE YOU ALL!

Love,
Angela

Lisa Cannon said...

I will be thinking and praying for your sweet family.

Dale and Tabitha said...

Let's get rid of the dirty liver and get Lulu a clean liver. Love you sweet little baby girl.

I told Lincoln that Jonah can't come over tomorrow because he had to be with his sister Lulu and he said Mom just bring our computer and play Jonahs song (Three little birds) and we can sing it for Lulu. He played it over and over again on the phone and the computer trying to learn the song so Jonah and him could sing it. Please let me take Jonah whenever you need. I'm actually off all next week and would love to have some entertainment for Linc.

Love you guys. Let me know if I can bring you any food cravings to the hospital. Some wise woman told me the food gets old eating it everyday.

Sarah said...

we will be thinking of you and praying for you EXTRA HARD!

Karen said...

..praying for you and your family.

Margaça said...

I hope the perfect liver will came soon for Lulu.

It´s so hard to wait the call. It´s so hard to wait for the Living donor results.

But after this you will have a healthy Lulu, walking around, eating everything and making you so, so happy!

And Jonah will have a sister to play with all the time, with more energy than ever!

love,

Alice

Margaça said...

When Martim did the tx, my daughter asked me " Mummy, are you sure they putted the liver in the right place?It´s inside his tummy?"

Erica said...

My heart sank when I read the title of your post. I am praying for London's Christmas miracle. If I had another piece to give I would so you can see your sweet little girl doing all the things little girls should.

The Davidson's said...

Bummer your christmas will be in the hospital but I have to say they seriously do an AMAZING job keeping the spirit of christmas alive there. It pretty much brings me to tears every year cuz PS (santa does visit the hospital ;) I am working all next week i will for sure come see you. Keep your head high, your doing all the right things, sometimes life just has to work itself out in its own way. Its like that part in Evan Almighty when steve carrell says to god "but this wasnt part of my plan" God:"(laughing)YOUR plan!!!!"
there is always a reason..... See you soon. Tausha

Rachel said...

we're all praying for lulu and your family. jonah is such a great big brother! hang in there lizzie!

Karin said...

She's the sweetest thing ever. This is Bert Smith's wife-I met you at the boutique. I wanted to let you know that when I got home from that Bert told me he forgot I was going and he had really wanted to contribute to Lulu. Can you send me your address?
karin.d.smith@gmail.com
Merry Christmas!!

Carrie Page said...

Oh Liz,

Hang in there! Looks like you've got one amazing prayer chain going on!

I have to say that I've only been a donor for 2 years now. I had such mixed emotions about it all. I knew I couldn't be hypocritical, though...if one of my girl's needed an organ, I would do anything in my power to make sure they were on a list. I'm now registered and stories like this only further that conviction.

We will continue to pray that you will find the compatibility with a living donor and we will also pray for the family donating to UNOS as well.

Lots of Love

Miche Barbosa said...

Hi Lizzie,
I just wanted you to know that I have been so touched by these beautiful videos, events, and all that is going on to help your sweet daughter! There really is nothing like being a parent and the love that you have for your own child. Reading this has really reminded me of how important family is. You have an amazing strong spirit, and it's apparent that you two are amazing parents. I sincerely hope you will feel lifted in these times. Please send James my best as well- he is a wonderful person and I only wish the best for your sweet family. :) Our thoughts and prayers are with you.

Carli said...

The ward fast for your family was very moving. there are a lot of people praying for y'all (including myself)! I know that we don't know each other very well, but I think about you and your family every day and pray for the best. Little Lulu is so strong and gorgeous...and she has the greatest mom a girl could ask for (especially since you never let he little fingernails and toenails go naked) :)

Cannon Family said...

Just wanted to let you knwo we're pulling for you and little Lulu! You're such a sweetie and your family is just adorable!

Annie (Taylor) Cannon

Annie said...

Oh, honey. Praying so hard for your family. Both of my girls pray for London by name several times a day. We'll be holding our breath for the week's news. Love you. xoxoxo

Amanda said...

Lizzie, our thoughts and prayers are with you! I can't wait to hear the good news that she got her liver! I hope you guys have a very Merry Christmas, as much as you can!! Thinking about you lots!

Megan said...

Hello-

I've been following your blog and I'm simultaneously saddened and optimistic about this last posting. I am thinking of you and your family and hoping everything goes well.

Megan (Maggie's mom - maggieherrett.blogspot.com)

Willy Happy Mama said...

Wishing and hoping and praying for a little Christmas Miracle for your LuLu! Julie

 

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