Sayonara PCMC...til tomorrow that is.

New trick-head stands. Hate that it's on the hospital floor...but, what can I do? Whatever floats her boat at this point.

London's scans went well today (hooray!), no blockages. Blood flow, kidneys, spleen, LIVER all look good. Q. Book is chalking her liver inflammation to the Epstein-Barr virus. So they will let us leave today, with another medication (Valcyte) to control the EVB as well as lower her immunosuppressent drugs to help fight the virus. We will go back to the hospital early in the morning for more blood work and she'll be followed closely (as always).

Dr. Book is so amazing. She is always calm, cool and collected. She always knows what to do and how to do it and how to get it done quicker than anyone else could. I have such respect and love for her and her team. We couldn't have been placed in better hands than hers. It will be a sad day in Utah for liver families when that woman retires. I declare a Holiday called Dr. Book Day--I'll let y'all know when it is and what to do...Sometimes the only peace I can find in all of this and what is ahead is that she will be there to take care of us.

xoxo

lizzie

alpha-1, liver mum

Congrats Harmonee on being so brave and strong. I can't believe these tiny little bodies with huge spirits can endure so much. We are SO proud of her and can't wait to see the new life her new liver brings.

She's not a reject! ;)

...I already knew SHE wasn't but her liver isn't rejecting either. (don't think I've used that horrible term since 7th grade) So now we just need to find out what IS going on with her liver. Really, I should say "their" liver. I'll always think of it as Ashley's too.

The biopsy showed inflammation/hepatitis which isn't a good thing. Tomorrow she'll have more testing, an ultrasound and venogram. This will give them a good look at her liver and check for clotting where her and Ashley's veins connect. I don't have a lot of information right now but am looking forward to rounds tomorrow so I can pick Q. Books amazing brain. (or whichever amazing GI Doc Brain is on service) I'm relieved but also scared. I wanted her cold a few weeks ago to be the last thing to get her down, for a while at least.

My Mum came up last night with her overnight bag and forced me home to sleep in my bed with my James. I fell asleep to him rubbing my scalp and tickling my back. It was so strange to wake up together in a house without our kids. One at NaNas the other at the hospital. It's still weird that this is our life. I am grateful for the good night sleep I got and for the cozy cushion my Mom left behind on my chair-that-converts-to-a-tiny-bed at the hospital. She is to me what I am to Lu and Jones. Their comforter, their best friend, their number one fan, someone who will love them no matter what. I can't believe I am THAT to two perfect little humans of my own and my Mom is still that to me 29 years later.

My Mom went through a lot to have me. I caused severe complications during her pregnancy that were life threatening to her and more so during delivery. Her Doctor highly recommended she abort me several times and save herself and preserve the family she already had. She wouldn't. He wouldn't. My poor Dad having to face the possibility of being a young widower with 5 kids all 18-months apart and losing his sweetheart. They didn't even flirt with the idea, her Doctor probably thought them crazy. They had faith it would work out and she already loved me enough that she would have died trying. They were willing to sacrifice so much to bring me into their family. I can understand now being a parent myself. I would sacrifice anything, myself included to save my family. That is why I was so hurt when I couldn't be the one to save LuLu and give her MY liver. Moms want to make things better. I just want to make her better.

So, my plan for now is to buck up--face a few more days in the hospital with London and many more hospital stays in the future. I'll be happy to be here and stop mourning what I'd really like for us to be doing. I am her Mum and will continue to do whatever it takes. We have HER. It's amazing.

She doesn't nap well in the hospital. I know, go figure. A well lit, noisy room with people coming in and out and me sitting here trying not to make eye contact doesn't scream "I want to go to sleep" for a one year old. So after a few hours of her pittering and pattering in her metal crib I decided to climb in with her. It was a beautiful experience. After many little fingers up my nose, in my eye and trying to pry open my mouth she finally settled down and I got to sleep next to my baby, who will not be a baby much longer. And what if she's my last baby? I've always wanted three but as I've learned life doesn't always go as planned. There are a lot of logistics for us to now think of with having a third. So for now I'll savor her as if she were my last but hope one day she will be a big sister.

More news tomorrow, hopes to get to the bottom of this.

xoxo

lizzie

alpha-1, liver mum

Knock on wood

Seconds after finishing my post yesterday my phone rang. Caller ID said it wasDr. Book. I couldn't wait to say "I was right about clinic today, ha, ha, ha, ha, ha-ha" to our nurse...I know, I'm so mature. After I told Corinne and she lovingly gave me a courtesy laugh, she said "well it's a very good thing you did come in today to do labs". My heart dropped to my big toe. Tears already flowing. No. No. No. No. Whatever she was about to say...No. I can't do it. My poor Lu, we can't do it. We can't go back to the hospital, we just got out. There can't be something major wrong, we're just barely on the right track. She SEEMS just fine.

She said her liver numbers are very alarming. I am sobbing now. I walked out to James in the kitchen. All he sees are my tears and knows something is seriously wrong, he just doesn't know what. I am on the floor at this point, my legs wouldn't hold me up. We needed to hurry back to the hospital, there would be a room ready for us (bypassing the ER) and she'd be getting a liver biopsy done tomorrow. Her liver enzymes should be around 60, but one was 700 the other over 1000.

Fast forward to the present moment. London is positive for a virus called Epstein Barr which could be contributing to the elevation in her liver numbers but the only way to know if it's in combination to rejection is the liver biopsy. She just got out of surgery and is recovering well from the anesthesia. We'll hopefully have results in the coming hours from her biopsy.

Dr. Book calmed me last night. We don't even need to be thinking about another transplant. They can most always treat rejection. The EB will be monitored very closely and be treated with antivirals. Again EB is no big deal for the common population but for a liver transplantee and immunosuppressed baby it's dangerous and will be treated seriously.

So for now we wait. I worry and am exhausted. I want off this roller-coaster. I don't want have to worry about London every day. I am sad for her and for what has been her normal life. She hasn't been to the zoo, has been to a park once (and got sick after) and rarely leaves our house unless it's to go to the hospital or to stay in the hospital. She's been to few family functions, and is a novelty to her cousins. I know it will get better and easier...I'm just ready for that to be now.

xoxo

lizzie downer ;)

alpha-1, liver mum

ps Harmonee is still in surgery, it's been a long, rough night but she is persevering.

pps Ragnar relay is a month away...whenever I get serious about training for my 13.5 miles that I'll be running, we end up back in the hospital. New method of training- James will drop me off 10 miles away from home and I'll make my way back. :) Do or die at this point. If we weren't running for "Donate Life" I'd probably have forfeited by now.

The Best medicine + Gods Hand = Big Fat Miracles

Harmonee is doing AMAZING. see http://www.harmoneesliver.blogspot.com/2010/05/blue-eyes.html for her Mum's update today. WOW is all I can say. They will start accepting offers in the next few days. Thank you to every ones love and support for her. I've had emails from people offering to undergo live testing for her...wondering if there is anything they can do for this family. Thanks blog friends! Ya'll are some good people.

This is about 2 am last night, still in the ER. We got into our room around 3 and to bed by 4. She had just been through the ringer when this was taken. She was cathed, nose/throat suction/IV/labs which didn't go so well and chest xrays in a 30 minute period on top of being seriously exhausted- that's gotta hurt. James always gets a little PTS after seeing and holding London down like we have to and witness her suffering.

She's SO forgiving.

Last night we ruled out rejection issues, her liver numbers are fabulous. Bacterial infections were also ruled out...so we are still waiting labs trying to figure out what is causing fevers that persisted today as well. Doctors suspect it's something viral,(CMV, EBV) with her weak immune system fighting anything off is difficult. She's been treated with antivirals and antibiotics since last night and receiving fluids to help combat the fever. She has been in good spirits all day which is promising. We will stay until they figure out what's buggin' my girl. Hopefully this doesn't turn into more than a few days.

We are so grateful for London and her fighting spirit. She was born with a great purpose in her life, so much good has come out of being born ill. She has taught James and I lessons we could never have learned, changed us for the better. I'm excited to see her fulfill her God given potential. I know she will continue to change the world we live in.

Get well soon Lu.

xoxo

lizzie

alpha-1, liver mum