Day 82 Update

Ryman’s latest ammonia levels were 53 and then 63. So those are looking good. However she currently has a fever of 100.3, which for a urea cycle patient is a big deal. That indicates something else is going on here. They did blood draws for all kinds of test for infection. They have cultures going but those take 24-48 hours. They may do a nose swab to check for some viral things that could be going on. I am kind of hoping we get something back that points to why her ammonia spiked. If her fever reaches 100.4 they will start antibiotics and meds to bring it down. Her heart rate and respiratory rates have been high so they had to put an NG tube in for eating because they were worried about her possibly aspirating.
I haven’t heard yet if Sawyer’s latest number number was low enough for them to go home.
Thank you all for your prayers. I’ll update again before bed tonight.
So much love,


One thought on “Day 82 Update

  1. Prayers for you all. Before I read they had talked to you about a port, I was going to suggest it. I have cystic fibrosis so need IV antibiotics frequently, and PICCs were getting so difficult to put in, I finally got the port in 2008. It was the best decision, and makes my life so much easier. They can also draw blood through it. Getting accessed is no fun, but one stick, much easier than IVs and especially PICCs, and you can numb it so she won’t feel it. Hope they can do that for you all!

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