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.