(cell phone photo)
Corrigan slept GREAT last night. He often does that first night due to the hours and hours of screaming he does as he is being poked and prodded during the long process of getting from home to hospital. He fell asleep around 10pm and only woke at 4am because they needed to draw new blood for another ammonia test. (result…70)
The medicine that takes control of the hyperammonemic episodes is called Ammonul. Ammonul is sodium phenylacetate and sodium benzoate (with arginine added)and boy does that stuff stink! It is funny what you get used to though. When Corrigan was first born I thought I would never get used to the odor of the meds. Now, the moment I catch the first whiff of it…I almost smile because it reminds me of the nights, when Corrigan was only days old, that I would leave him in his hospital bed and spend the evening sleeping in a real bed, across the street, at Children's House. I dreaded leaving him alone but he was sleeping so much and after several nights sleeping in a chair my body would demand something more substantial to call "rest" I would lay in my bed and miss him so badly that my body would ache…and then I would catch a tiny smell of the medicine on the crook of my arm…or on the sleeve of my shirt…and it would calm my heart and I would sleep as though he were with me.
All of these months later, even after plenty of washings, the pillowcase cover on his Boppy pillow STILL smells slightly of meds. It cannot be easily washed away and it permeates everything that it touches. When I get the baby home it will be weeks before I smell shampoo on his head rather than medicine. The nurses all complain about the smell and, as you can see in the photo above, they label it exactly what it is.
a lifesaving wonderful smell, if ya ask me!