So backing up a bit...James was not going to be considered any further after his CT, because his liver was much too big for her. She'd have to gain anywhere from minimum of 3 to 5 pounds in order to receive his liver. That is a CONSIDERABLE amount for a baby with advanced liver disease. So they moved on to my sister Cydnee. She too was ruled out for both the size of her liver and her anatomy (like me) is incompatible with donation.
We were expecting the team to call Jordan (James's little brother) in today who had completed screening up to the point of the CT. They didn't and wont be. They feel confident that the combonation of being male (i.e. bigger livers) and his height (taller people generally have larger livers) they'd be looking @ a liver the same size as James. So, since there is no liver and LuLu is fairly stable, Dr. Book feels like it would be Londons best interest to share her Daddy's liver. **The deepest, most heartfelt thank-you to those willing and able to sacrifice so much in order for LuLu to get better. You know who you are, your eagerness and selflessness to donate is as if you DID in our book.**
Now we wait for her to gain and keep her as healthy as possible. She will be listed on UNOS as well. We hope it will not take more than 3 months to gain the weight she needs for transplant and that nothing forces the hand to do it sooner. Among many drugs and vitamins- she's been on and will stay on a profalactic antibiotic to help stave off infection- our biggest enemy.
I've had my hesitations from the start about James being the donor. Mostly selfish ones- like how could I get through this without him by my side? I imagine having to see him and London suffering at the same time and it makes my heart physically ache. Last but not least, worrying about our business and livelihood.
But on the other hand and most importantly it is what's best for London, so that is what we will do. The closer the genetic match the better- less likely for rejection. Since the scar cannot be on me as I would have liked I am glad that it will always be close to home. She can lift his shirt up, have him at the pool with the same mark of bravery and have that special bond that I know they will share because of it. I'll admit I'm a bit jealous but indeed grateful that she has a Warrior Daddy who is as relieved to have "found" her a liver as I am.
On our first date, where I fell hard and fast for Mr. Badger, he told me (mind you our first date lasted about 12 hours and we'd covered about every subject in the book) very humbly that he's always wanted to save a life...even if it meant him dying to do so. Like that was seriously on his "To DO before I die list".... I remember thinking to myself "please don't throw yourself in front of a bus or anything because I REALLY want to marry you". So, he gets to save his daughter and I get to keep my husband. Win, win.
So here's to not spending Christmas in the hospital and the answer to our prayers. Cheers! As a dear friend of mine would say.
8 comments:
Wow I am glad to hear you have a plan now, and that it doesn't mean you will be spending Christmas in the hospital. The waiting is hard but things will all work out in the end. Is London on TPN? That is what made all the difference for Eden. She gained about 5 pounds in the two months she was on it before transplant. I am praying that it can do the same for Lulu
Oh my gosh, I love the first date story! Maybe you can find matching bikinis for James and London ;). Thanks for comforting ME today Liz! I sure wish I had a skinnier liver to share with Lulu!
Little London is so special! When she's in school she can now say that she was born from two bellies of love... one made her and gave her life, the other made her liver and let her live!
God is so great!
God Bless!!!
I'm so thrilled that you have a plan and that James can be a donor. Here's hoping that sweet Lulu can gain all the holiday weight the rest of us are trying (or pretending to try) to avoid! :) xoxoxo
I second what Annie said... Have a wonderful Thanksgiving!!!!!
Its too bad a fat transplant isnt possible cuz I could donate and have her looking like a sumo baby in no time ;)
Cheers for sure to a holiday at home. Happy to hear things are moving in positive direction.
we're so glad that you have something to move forward with now. And yay! that if it couldn't be you, at least it gets to be her daddy. Good luck fattening up that little girl, and we'll be thinking of you through the holidays! So happy that you get to spend it home, together.
Lizzy Lou... What wonderful, miraculous news that James has been an approved donor for beautiful, little Lulu. I could not be happier. I think about you all the time and wish I could do more to help. You are in my heart and prayers constantly and I want you to know how much I love you. Have the most wonderful Thanksgiving my dear friend.
Melissa
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