Day 88

Ammonia was 84 at 12am and 66 at 6am!!! This is great but she is only in .8g of protein and she can’t live on that little. So now that the ammonia is lower we will try to increase protein today. They also need to put a picc line in today because they can’t draw from the size that we got at Vandy. Different hospital rules. The inky issue is they want to have her not eat for hours incase something goes wrong and they have to incubate her. Pretty sure the metabolic team will not go for that. So she may just get some meds to make her sleepy and do it without sedation. We did it with her wide awake and no drugs at Vandy. She is a tough girl. Good thing is that Children’s National is known for their great Picc team and being really good at central lines. Getting ready to join the doctors while they round on her. I update what the plan is when I know.

With high ammonia the sleep you get really isn’t good sleep. So now I know she is sleeping peacefully.



2 thoughts on “Day 88

  1. So glad her levels are down, will continue praying that today see’s great improvements all around. Also pray that God give you physical strength! Our minds get weak and numb when we get beyond exhausted.Love ya Hun

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