It's Friday evening and Porter just came off of a 24 hour infusion of ammonul. Yesterday afternoon he started vomiting so we took him to the ED where we hung out for awhile. His first ammonia level came back as 123. We tried an oral washout (protein-free formula) for his "dinner." If he tolerates a full feeding of protein-free formula while in the ED, and the ammonia comes down, they usually let him go home with a plan for modifying his nutrition. Soon after finishing his dinner Porter vomited again. A few minutes later his 2nd ammonia level came back from the lab. It had gone up to 256. So, after hugs and kisses, I headed to my parents' house to scarf a late dinner (thanks, Mom!) and pick up Katie. Chris and Porter made their way up to the PICU soon after that and settled in for a night of nausea (poor guy) and interrupted slumber.
Chris trying to occupy/restrain Porter in the ED. Active toddlers + I.V. lines = TROUBLE!
Over night Porter's ammonia came down but then started to swing upward again today. Porter walks a very fine line between too much and too little protein. If there is too much protein, his nitrogen scavenger medication cannot keep up and he gets sick. If there is not enough protein, his nitrogen scavenger medication works against him and starts looking for protein in his tissues and he gets sick. We are perpetually searching for the sweet spot; that perfect amount of protein and nitrogen scavenger that will allow Porter to grow and thrive.
We are not sure yet what caused him to get sick this time around. We will have a better idea when his other labs come back from the University of Florida. But, we do think that today he became catabolic because of a lack of protein. After we introduced some protein this afternoon his ammonia level began to come back down again. We are hoping it will continue to come down and stay down tonight. If that happens Porter could come home tomorrow.
Here's a picture of Porter out for a cruise with his best buddy Nurse Pat and new friend Molly:
Katie fell asleep on our way home last night so bedtime was a snap. We drove up to visit Chris and Porter this morning and had lunch with them before heading to Middlebury for work. We stopped at a different kind of sweet spot for ice cream about half way there. Each of us had a scoop of (green) mint chocolate chip in a cone. It was delicious! Katie made the classic rookie mistake of biting off the bottom tip of her sugar cone too soon. Surprisingly, she managed to keep most of the melting ice cream off of her shirt. She also reassured me that the drips that did hit their target were okay "because green is beautiful."
Once again our awesome friends Michelle and Sean took care of Katie and me today. Michelle looked after Katie while I was at work and then Sean fed us yummy grilled steak, mashed potatoes, and Katie's favorite maple carrots. We are immensely grateful for their friendship.
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