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.