We were warned. Kids with citrullinemia end up in the hospital multiple times a year. But you can never be prepared for a sudden racking cough at 11:00PM that sends you scrambling to put together a hospital bag.
(I have learned a few things about hospitals at this point. One is that you are always there longer than you thought you would be, so freeze your breast milk and throw the cloth diapers in the wash if you don’t want to come home to spoiled milk and a stinky disaster. #thingsgranolamomssay)
When we got there, it took two hours to get enough blood for bloodwork and get an IV in. No amount of singing and sweeties could calm the poor baby. Unfortunately, the crack team for hard sticks is on the day shift. Thankfully, ammonia was normal at 39. Still, Jacob was coughing and dehydrated, so he was admitted to the PICU where he is currently passed out in my arms from sheer exhaustion. I am typing this on my phone and on zero sleep, so apologies for formatting weirdness or incoherence.
As it turns out, we probably could have kept him home. But what if we had put him to bed and he had slipped into a coma? With citrullinemia, that danger is real. So instead we dragged our sleepy baby into the scary, germ-ridden hospital in order to be poked at for hours. It’s hard to feel like a good mom when a masked nurse is digging for a nearly invisible vein and you are wiping the tears from your child’s eyes.
Justin has been a trooper. As soon as we arrived I had to send him home for the formula I incorrectly assumed the hospital would provide to us. He is now going home again to let the dog out, so when all is said and done he will have driven 6 hours of the last 24 to and from the hospital.
Jacob is okay. We will be okay. Prayers will help.