Well, fuck. I don’t know what to say. We’re in the A&E. At first it seems innocuous, we got Kai’s glycine bloods back from last week, and they were a staggering 177.
Now here’s the thing, 177 is good, it’s within normal glycine range…. but it’s not Kai’s normal. Kai’s normal sits at 250-300.
The thing with Sodium Benzoate is that if there is no glycine to bind to, then it gets toxic. If it’s toxic, then calcium and potassium get dangerously low. So I rang our CCN (community care nurse) and practically demanded bloods taken, so we could find out. She asked us to come in tomorrow, but I persisted. The glycine results are a good week old, and I worry. I worry because the last time his glycine was this low, we were admitted into intensive care.
On top of this,Kai’s been grizzly all day, and when he’s not grizzly he’s sleeping, for longer and longer periods (another worrying sign, similar to our pre-intensive care stay last time). And the seizures. Oh the seizures, they’re more frequent, and longer in duration. Add the vomiting and I’m all over the place. Is it that he’s teething? Is it that the vomiting is causing an absorption problem with the phenobarb? Is it sodium Benzoate toxicity? I don’t know. We got a taxi to a&e who were expecting us. We walked in to see Dr Lukas, one of our regular registrars from our last visit. I’m glad we knew him. I’m glad he knew us. I was so relieved.
So, we did bloods. Bloods for kidney function (sodium, potassium and calcium levels) and liver function (phenobarb levels) and for amino acids (oh hey glycine) and two pipes, covering blood/gas and a regular blood panel.
But then Kai didn’t keep his feed down. And he was inconsolable. And then he had three seizures within an hour. Our emergency plan kicked in then, even when we were in a&e. We busted out our rescue meds, and Sam (having arrived after work, I’m so grateful for Sam and that he came) gave buccal midaz. Poor Kai. He was screaming at this point, and then the midaz knocked him for six. Oh my baby.
I also called our symptom care team to let them know what was going on. I was very in control, but inside? All over the place. Emotionally well all over the place. I felt like I leaking out the edges, I was stressing out over his feed (we didn’t have a feed pump, and I kept forgetting to ask the nurses for what I needed, so every time they came back I was asking for something, a 20ml syringe for an aspirate, a 10ml syringe for a flush, sterile water to make up a feed, more for the flush… on and on. I was very glad when Sam arrived. I’m always much more centred when Sam is around).
We were moved into a bay closer to the nurses station, and then into the assessment unit. And then came the waiting. The endless endless waiting.
Fingers crossed hey. Fingers crossed he’s going to be okay.
Update:
Bloods came back good hours and hours later. It’s teething. We think. It’s definitely not Sodium Benzoate toxicity. Thank goodness. It’s the not knowing that bothers me, so I’m grateful to know for certain. We’re going home.
