Day 84

We started the day with a plan to move to the floor. We haven’t yet so not sure if it will happen tonight or not. Ryman’s heart rate has been a little better. 150’s when she is sleeping which is better than 170’s. We tried doing an oral feed and she took about 45ml. They pushed the Poly-V-Si multivitamin with iron right after and within a minute she puked it all back up. So we went back to continuous feeds. Her Citrulline level is low so we tried pushing a dose to her through the NG tube and that came right back up. X-Ray verified that it is in the right place so not sure why she is vomiting unless she just isn’t able to handle very much volume in her stomach right now.
– Had to take a break –
She is currently getting a blood transfusion because she was very anemic and they were hoping it would help her heart rate. She is sleeping in my arms and it’s 146. Getting there! I saw the 130’s for a brief second.
Surgery for the port is scheduled for tomorrow, no time yet though. The port will make clinic visits so much easier and if we have another spike it will make getting the Ammonul so much faster.


2 thoughts on “Day 84

  1. Dear Brandy and Jeremy,
    I cannot imagine what all you are going through. I am praying for you both and for precious Ryman.
    Love you all,

  2. Praying for you all and especially as you go through this time of limited control. How blessed to have a God for us to lean into.

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