It’s has been 31 days since Ryman was placed on the transplant list! That means she should be a status 1B now. Less than 1% of liver transplant candidates are in this category at any one time, I guess that’s good. The 1B category is reserved for very sick, chronically ill pediatric patients, which is not a good thing to be. We have an appointment with Dr. Gillis (peds liver doctor) on Tuesday. We haven’t seen her since we left for DC so we are in a much better place since then. I am hoping to get a better understanding of the timeframe they are thinking for heading back to DC. That will probably also depend on how well Ryman continues to do with her ammonia level staying low. Speaking of ammonia levels, I think the last time I wrote I had said her ammonia was 60. Which started to worry me, it was trending up. So when Ryman started eating less you can imagine that I started to freak out even more. Her demeanor seemed fine when she was awake but she just didn’t want to eat as much. Since her medication and protein are all in her formula you can see the issue, right? I hate to get her stuck just because I am afraid but that’s exactly what I did. We went into the clinic yesterday and got to meet with the dietician to work on lowering her volume but keeping the protein intake the same. They had to call in someone from the IV Team since the office manger who usually sticks her was out. Going in on a day that your appointment isn’t scheduled on sure messes things up. The usual nurses who know the routine were out and I felt like a know it all telling them to call the IV team to do a scalp stick, page the dietician, telling them they would need a second person to hold her head still, pointing out the best vein and of course asking if we had ice for the sample. I might have to write a guidebook for moms after this :). The IV guy was great (can’t remember his name, sorry IV guy) and he felt so bad about having to stick her. He really didn’t want to do it, right before he stuck her he said “I know I am going to hell for this”. He got it first try! Her ammonia was 53! I was so glad to hear it was lower but also felt bad for putting her through another scalp stick. I know, better safe than sorry but I still fill bad about it. We also found out that our little nugget is a whopping 9lbs 6oz, she is growing so fast!
While there Dr. Morgan informed me that they have two very sick babies in NICU. One with a metabolic disorder called Maple Syrup Disease and yet another baby with a Urea Cycle Disorder. They haven’t determined if it is CPS1 or OTC. I know how dark those days were and how much all the prayers made light shine through. I also know how much I felt God’s presence during that time. I pray the same for those families. The cards from random small groups and friends with prayers made all the difference. If you get the urge to shed God’s light that way I am sure some cards left at the NICU desk would mean so much to those families or prayers for strength and peace during this time.
Love you all!
For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, “Abba, Father.” The Spirit himself testifies with our spirit that we are God’s children.