12th day

On Ryman’s 12th day of life and our 12th day of parenting we are on the road and Ryman is already off her jet and in DC.

We woke up to news that the meds broke the clot up but that the dialysis only lasted for maybe 1 full cycle. It kept throwing errors because she wouldn’t lay still. They gave her tons of meds to sedate her and she slept for a bit but was wide awake again this morning. Her ammonia level was in the 40’s at one point this morning which they think was due to them pulling out so much blood to get the clot out of the cannula and giving her new blood through infusion. The last number before she left Vanderbilt was 65. We are praying for an easy and safe transport to DC.

Thanks to our friend Jessica Esch for the hotel last night in Knoxville. We got some good sleep and feel rested for the rest of the trip today.
Also thanks to the Oakmans for our goodies to help keep us energized and to everyone who has helped out in making this transition as easy as possible for us. We love you!

We just got a call from insurance that they are going to cover transport. This is amazing since we were told this weekend that they were not going to.

“Fear, uncertainty and discomfort are your compasses toward growth.”

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13 thoughts on “12th day

  1. Tears! Thank God she is there and you are on your way! You three are on my mind all the time and we are praying often for you. Thank you so much for this update and thanks to whoever took those pictures of Ryman. I love you all!

  2. Hi guys! We are friends of Lindsey Appiah. We live in DC, just a couple miles from The DC Childrens hospital. We spend a bit of time in the hospital too, with our heart-baby. Shoot me a note, we would love to help you settle in and have some new friends here. I can bring you dinner tonight when you get in! Congratulations on your BEAUTIFUL baby!!
    Jo (and Joe)

  3. Praying so hard for Ryman and you guys!!! God has got this little girl in his hands and I am praying for his wisdom to the doctors in DC. Thinking about you and keeping you all on our prayers!!!
    The Record Family

  4. God Speed in your adventure to D.C. Dr. Marshall is an incredible man and physician. I would not want anyone else caring for my child in this situation. You have the right attitude and plan to help your child and family persevere. My thoughts and prayers will be with you.

    Beau Kelly MD MBA
    Pediatric Liver Transplant Surgeon

  5. Joe and I are praying, praying and praying! Please let us know where we can send things to you once y’all are settled. 🙂 So much love for all three of you!

  6. So happy you guys made the trip safely!!! Looking forward to seeing that sweet girl again in a few months happy and healthy! ❤

  7. We are sending our thoughts, prayers and love to you. And know that we are so inspired by the strength of your faith – I keep hearing the words from that song, Jesus take the wheel. I just know that the power of all this love is helping Ryman. Have a safe and blessed trip to D.C.

  8. I am so lucky to have met Ryman and your family. Your blog is a wonderful thing, and I am so glad to read and see pictures that you are all safe and getting the best of care in D.C. Maybe we will meet again, but until then, I will say silent prayers for you as often as I think of you, Dr. Lanpher, and Dr. Summars.

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