Day 130

Only one scare over night. They turned Ryman onto her side and water from the ventilator went into her lungs. Her vitals all dropped but they suctioned her out and she recovered quickly. Dr. Lanpher came by this morning, right in time for rounds. It made me feel much better to have him here. The doctors here are amazing but he knows Ryman and I feel more reassured when he agrees with the plan. She is doing really well. She is 7.2 kilos!! Some of the weight is fluid but some could actually be weight from her new liver. an adult liver can weigh around 14 pounds, pretty crazy. They just gave her Lasix to see if she will get rid of some of the fluid. She is pretty puffy. I don’t think they will restart feeds until day 3-5. She is off of Lipids as of this morning. They took her off the ventilator and no more oxygen. An ultrasound of her new liver showed great blood flow and improvement from yesterday’s scan. They removed the central line in her neck and the arterial line in her arm so we are back to just the picc. Catheter is out as well. The last ammonia was 45! She has been waking up and whimpering some so they have her on morphine when needed for pain. If she can take her medicine by mouth at 5pm today they will also remove her feeding tube. She should be able to go to the transplant floor tomorrow if things keep moving in this direction. God is truly showing us what he is capable of doing. We are so amazed at how strong our little girl is.
Warning: The picture below is a little graphic but we know several of you are wondering about the incision. We got to see it today and honestly we think it looks amazing. The staples will come out in a few weeks.
A donation page has been set up for us. We have been so blessed beyond words from those who have already given to us. Emotionally and financially. We keep getting ask where people can donate to help ease some of the finance stuff so we are at a point to where we are ready to accept a little help. We have been so blessed by people mailing cards, money and gift cards all ready. Thank you all for that support! For those who have been asking us the site is now set up at:

Ryman is one strong little girl and is kicking some major CPS1/transplant butt right now.



3 thoughts on “Day 130

  1. Bless her. I’m sure it’s hard to see too even though she’s doing well. Still prayer for you and for little Miss fighter!!

  2. Baby Girl, you just keep on showing them what you’re made of! You are such an inspiration to so many, and so are your Mommy and Daddy. Someday that scar will be your beauty mark, a reminder that God has always had a plan for you. We can’t wait to meet you when you are healthier and give you a big hug and lots of love. Until then Mommy and Daddy are just going to have to give you some extra love for us….. I think they can handle that, lol. We’re gonna keep on praying for you, that God keeps things going positive and you’ll soon be back to Diva status, complaining that you want your penthouse back. Love ya Nugget, Mommy and Daddy!

  3. She’s a true fighter…stay strong …and keep kicking cps1 butt baby girl!!!!
    I might not know you guys but knowning all about cps1 from unfortunate experience….miracles do happen! Bless you all!!

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