Induction day – Brandy
If things would have gone as we had planned I would be an hour into the induction process right now. Instead I am trying to process the fact that we are going to be picking up and pretty much moving to DC for the next few months. Really hard to get a grasp on that right now.
Yesterday morning we had to make a decision on which hospital would be doing the transplant, Pittsburgh or DC. We were really pretty sure we wanted to do Pittsburgh. They do more liver transplants than anyone else and have the best numbers. But after talking to several doctors and looking at the numbers at DC, we realized that even though they don’t do as many as Pittsburgh a large majority of the ones they do are on babies. Another thing that played a big part input decision was that DR. Summars, who is the guy for this type of disorder, is at DC National and since we are going to possibly be at a hospital for a bit before the transplant her pre-care will be much better at DC. We hadn’t originally taken that into account and it plays a huge role in keeping her stable until the transplant happens. Dr. Marshall is the best person in the entire world to care for Ryman right now. Even her current doctors say this. He has already been consulting with her team of doctors this entire time and they say the team has really rallied together to get everyone on the same page for when she arrives in DC (on her private jet of course).
As Jeremy mentioned we have friends there so that’s a big plus too. All signs pointed to DC. So we wrote it on the form and signed.
Last night I received a Facebook message and a call from one of our fellow crosspoint family. I had met Shannon at the Bellevue campus before and Jeremy played with her on the music team several times. She is friends with Dr. Summars wife, see Dr. Summars and his wife Karen use to live in Nashville and both worked at Vanderbilt before they moved hospitals. Shannon had messaged Karen and let her know we were headed that way. Karen told her to give me her cell phone number. So today I will be calling and talking with the wife of THE best urea cycle disorder doctor in the world. Yep, I see you GOD. Not letting doubt you for long :).
Last ammonia level we got was from 2am and it was 69. This is great. Anything below 70 is the goal. 30’s and 40’s is ideal but we will take 69. The 6am labs aren’t back but I’m praying its lower. The nurse said she hadn’t pee’d since midnight so they were talking about putting a catheter back in. While talking about it she started peeing… Haha.. It only took threatening her with that :). The nurse said she is very stable and they think she is feeling much better.
Yesterday was a rough day so I pray that today we see a little more light.
He is always there even in the darkness to take our hand and lead us into the light.
Love you all and are so grateful to have your support, love and prayers.
Hope this happens again soon, eyes open.