Day 126

We have moved back into Ryman’s penthouse at Children’s National. The PICC line was placed on Monday and we moved up to the floor into a different room until Rm 707 became available later that night!
It’s funny that I felt at home when we got back to the 7th floor. We have made several memories here and will make plenty more since I am pretty sure we will not be going any where soon. We even have an air mattress so we do not have to sleep on a small vinyl couch or recliner! Ryman has been stable and we are off of Ammonul and back on our full dose of Bupheynl again. The genetic team looked at her labs from the weekend and there is no indication of what might have caused the spike. We really have felt so blessed to be at Children’s and can’t say enough about the team here. From Chai Tea Latte’s that they bring me in the mornings, to stuffed animals for Ryman, social visits on thier days off and tears shed for our family and Ry, we know we have a team who wants to see Ryman come through this with the least amount of damage possible. I know that God put these people on Earth to make a difference, not only in our life but so many other children who will have a chance at health because of the sacrifies they have made. I heard a story in rounds yesterday morning about how the use of sodium benzoate and phenylacetate (Ammonul) was discoverd for treatment of urea cycle patients. The doctor responsible is here at Children’s National, pretty amazing that he and the doctor who discovered CPS1 are both here, he use to be at John’s Hopkins. After giving a lecture an older gentleman came up to him and said that his lecture remined him of an article that he read in the 1924 journal of biochemisty. He then went and found the article which got them to thinking about the use of sodium benzoate and phenylactate to treat urea cycle disorders. So amazing how we humans can put our minds together and continue to discover and learn more and more about the body and science in general. If Jeremy or I would have been born with a urea cycle disorder in 1983 we would have more than likely died. Ammonul could be made in labs at hospital if someone wanted to but it was extrememly expensive and still is, it did not become more widley available until the early 2000’s. I thought that was such an amazing thing to hear and wanted to share it with you guys. This is why donating to research is such an important thing, I really hope that once we are through the first hump of this journey that we are able to be proactive about being advocates for such things as urea cycle research.
Feeling very blessed today. Jeremy headed back to Nashville last night to work some but the nurses are amazing and took the 4am feeding and let me get some sleep so I was able to work a little after Ryman went down. Prayers that things continue to stay stable and that the insurance company doesn’t give us any grief about keeping Ryman in the hospital until a liver comes. It is really the best chance we have at making sure she is stable and preserving her brain.
Through the passion and skills that God has given these nurses and doctors and the prayers and faith of our family, friends and friends of friends I truely think we can do that.
Love to you all.20130828-094054.jpg20130828-094119.jpg20130828-094606.jpg20130828-094612.jpg20130828-094618.jpg



7 thoughts on “Day 126

  1. Love & miss ya’ll! All I have to say is Ryman may be a little sick but she sure doesnt look it! She is such a beautiful child! I mean…..I knew she would be, just look at her parents! ❤

  2. What an amazing story, so wonderful to have such great specialist right where you are! I agree that nurses are some of the true angels that God has put on this earth. To the nurses who follow Ry’s blog, I pray that God blesses you and your family. Thank you for all you do, not just for Ry, Brandy and Jeremy, but for each family you care for! Give Ry lots of hugs from her Ky family, we love you all so much. Jer, you’re amazing…. I know you ache having to go away to work, but trust that God will watch over your girls till you get back safe. Lots of love and prayers for you!

  3. Hey girls, it has been a while since I left a comment but I wanted you to know I continue to think about you. Prayers continue to go up along with all the Praises of Thanksgiving as well. Let me know if you need anything, remember, Never Give Up….We Are Going To Win! This is what we said every day while living in the hospital in fear with my sweet Katherine and it was the family, friends, doctors and staff that keep us going. Love ya, mean it.

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