We are having a very slow road back to finding a happy ground.
We actually started with .5g (9ml per hour mix) of protein and 37ml of fluid. Ammonia came down to 66. Yesterday we increased to .8g (14ml per hour mix) and I am guessing we went up a hair (Ammonia went up to 94, 93) because its set to 15ml per hour and we went to 10ml on the fluids (Ammonia was 91). Still not doing Arginine. Doing a Cutrulline dose in the feeds. This morning it was 85.
I put together a road map of Ryman’s formula changes the last few weeks and our past week at Vanderbilt, as much as I could remember. I thought it might help us see the big picture. I emailed it to Dr. Litchter at midnight and she email back at 2:30am saying that such information is always helpful. Hoping it gives her a better understanding of what our next turn is.
In looking at it, to me it seems that when we upped protein on 6/27 to 1.7g/kg from 1.6g/kg that’s when her volume intake started to decrease. Maybe she was trying to tell us she didn’t need anymore? We then condensed the volume and she started actually taking in the full amount if protein. That’s when we presented with ammonia 221.
Dr. Litchter tried explaining it to me that when she maxed out at 1.65 g/kg here last time that is when she was growing the most so we could say that she would never be able to tolerate more protein per kg of body weight because that was the time when she would use the most protein to grow. The numbers show she is protein deficient but she will always be because she can’t tolerate as much as she actually needs.
Also, her picc line wasn’t central when we got here so we have a new groin one and the Ammonul and fluids started going through it at around 11pm last night.
I am not sure what the next step is. I think we may increase the protein again today but waiting for Dr. Litchter and the team to round.
God is good, he has made one strong little girl. She cried a little when they first stuck her to get the picc line in. Just numbed her skin and no sedation or pain meds. She feel asleep! Toughest girl I know.
I got to see Julie and Cory last night and have dinner with them. I had an amazing nurse, who told me she would have a tech come sit with her until she feel asleep. They brought a beautiful orchid that they made me leave at the desk until we move to a room. Can’t wait until Ryman can see it.
Jeremy gets here tonight! I cannot wait to see him!!!!