Verdict is in...

We were both very smelly this morning so Lu got a good bath and I got to go home and shower thanks to Aunt Mary Jane. I do not enjoy showering in public bathrooms, I'd rather be dirty til I can make it home.

You bet I'll blackmail my daughter with this picture one day. It made me laugh, hope it makes you too...

Ahh, that's more like it. Enjoying room service-a perk to being isolated to our room. Hospital food gets a bad rap, but it's actually really good- as long as you aren't eating it more than a few days straight, then it turns bad fast.

Poo for dinner or so it looks. It was actually dessert. Chocolate dipped Oreos- a favorite hospital splurge.

A visit from Jonah is always good medicine. Thanks to Nana, PaPa, cousin Jen, Miss Joy and Miss Julie for all your help with him. Jonah also loves self declared take-your-son-to-work-days like today.


RHINO VIRUS

..sounds really scary, but in all actuality it's a strain of the common cold. Not a big deal for most. For LuLers it is. Hence my paranoia about hand washing, shoe removing, Clorox wiping, limited visitors, aversion to public places etc. It's my life to keep her healthy we aren't ever "out of the woods."

"Rhino viruses can cause clinically significant, chronic lower respiratory tract infections in immunosuppressed patients. Respiratory syncytial virus, influenza viruses, and para influenza viruses have all been reported to cause serious lower respiratory tract infections in immunocompromised host."

We are happy it isn't anything worse but also realize that trips to the ER for a cold/fever is what is in store for us, forever. I'm not complaining- we are grateful she's here with us and we have access to the best medicine whenever she needs it. These few day stints are good reminders of just how lucky we are and how important our little family is to us. Life is so fragile and London is our constant reminder of this.

Get well & keep well my Little Lu.

xoxo,
Lizzie

Alpha 1, liver Mum

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

Wee Harmonee & Little LuLu under the same roof

Liver MuM Love. (last night)

On the phone tonight with one of her GI Docs...no messin' around post transplant. And per Dr. Jackson...we're off to the ER. A quick shower, packing of bags, dealings with dogs, sending Jones to NaNa's and we are ready to go. I don't ER-alone.

Waiting...waiting and more waiting. Just how it goes.

Typical.

I am so happy to say that Wee Harmonee has been stable today. (see her blog for yesterdays update & more pictures I posted for her Mum) She has also had negative cultures for infections today. HOORAY! If they can get 3 straight days of negative results they will accept an offer for a liver when the right one comes in. This brings HOPE for HARM and her family.

In other breaking news, James and I are sitting in the ER with Little LuLu as she has a high fever (103) and respitory distress (72 br/p/m). She had a fever last night too, but broke and we'd hoped it would be nothing. This could mean an infection or be signs of rejection. If it is rejection it's caught early and would most likely be treated with an increase in her anti rejection drugs. If it's an infection, will be treated with antibiotics...so hopefully this wont be a big deal or a long stay. She is such a tough little love, we're lucky she's ours.

They will start an IV soon, draw labs, treat her with a broadspectrum antibiotic, chest xray, nose suction, get admitted to her suite and figure out what is wrong. Sorry for not calling Mum, but didn't want to worry you til morning.

This still feels like our home-away-from-home.

xoxo

lizzie

alpha-1, liver mum

Wee Harmonee

This love isn't thriving as we all hoped she would. Her condition has continued to diminish over this last week in the PICU. She's been in multiple organ failure. Besides her liver and kidneys her heart and lungs have also suffered. Harm has been on dialysis for a few days. She survived an emergency surgery last night in hopes it would send her in the right direction. She is very sick. The night was steady but this morning she couldn't keep her blood pressure up. Mum and Dad would love a miracle...but are also preparing for the worst with wee Harmonee.

Today her Mum and Dad signed a DNR as well as papers for her to be an organ donor of any viable organs. They hope her heart, lungs and pancreas will be healthy enough to give to another. If we lose one of our "liver kids" to Biliary Atresia, these parents are so loving & willing to give a "heart kid", "lung kid", "pancreas kid"......another shot at life--the same shot London got, the same one we're hoping Harmonee will have. Organ donation is giving them some peace right now.

Harmonee has been in the same room our donor Ashley was in. I pray Ashley will be close by today. I pray for miracles, please do to.

xoxo

lizzie

alpha1, liver mum

Our little Stair Master

A little over three months ago she couldn't lay on her bloated belly. Then she got a new liver, that liver was like a SUPER POWER. 2 weeks after transplant she was on her haunches. Days later crawling. Weeks later walking, now-sprinting and going up and down our stairs like it's no ones business. What a miracle. Thank-you Ashley and all donors who have given life to another. But we need many more. Our liver friend Harmonee is holding on tight to dear life in the PICU...waiting for a liver. I hope she gets her SUPER LIVER POWERS soon too. We love you Harm.

Harmonee has had multiple blood transfusions, receiving platelets and plasma to help her body hold on and fight hard. All that are able to donate blood, please do. You never know when you or someone you love may need it. Contact ARUP (local) or the Red Cross for an appointment, then consider yourself a HERO because it will save a life.

Loving LuLu

Tube time....

Cousin Jeff, sitting back, sipping a diet root beer and about to have some Sunday afternoon entertainment Badger style....

Don't worry, I'm a pro...we've probably done this to LuLu over a hundred times. :(

Quick and dirty....

Jeff trying to restrain James as he started to fight it....

I had it almost all the way down...

...and he yanked it out.

Maybe you had to be there...but it was one of the funniest things I've seen in a while.

He was gagging and all sorts of about to throw up..., thinking to myself that my tough husband is kind of a baby. LuLu does this all the time.

I'm surprised I didn't reflexively get chucked off the island.

Much coughing to follow, a continued burning, itchy nose and throat....

He's a champ for trying.

And I'm up...thought I could handle it. I've birthed 2 babies naturally at home. Just kidding, totally drugged and in the hospital but still I birthed 2 babies. My foot was pounding the counter trying to endure the momentary torture and secretly hoping I could do something James couldn't.

No such luck. Child birth was easier than this.

Poser. This is just taped to his face and barely in his nose. Neither of us could hack it...which made it even harder knowing we had to put it back down LuLu's nose immediately as she will not consume the amount of fluid/calories she needs to keep her kidneys flushed and add pounds to her tiny frame. But that's being a parent I guess, doing what you know is best for your child even when it's hard to do.

Wrapped like a burrito, Dad on top, head pinned with MuM's knees makes for a defenseless little baby. We're quick, she's tough and forgiving. It was a good few days to see her without it but it's not time to flush it down the toilet yet. Anyone up for the tube challenge??