I remember the PICU. A life of watching oxygen saturation, heart rate, pulse.
Case was 2 1/2 or so when he spent 4 days in the PICU. Not a lot by many standards. Others had been there for months. But it was in those days that I learned how us caregivers can painfully slip into the abyss of sats and numbers and … heartache.
Thankfully, after dropping oxygen after a tonsillectomy (his airway swelled) and many interventions including breathing helium (he actually spoke with a high pitched voice), he improved and was discharged.
Why do I mention this today? Because I’m reminded. In addition to the PICU, Case’s other scares have involved high fevers (we’re talking 103.8) many hours after two different MRIs under anesthesia. But he’s had MRIs and anesthesia without these effects as well.
As I sit, Case is asleep before me, having been discharged after an MRI/ABR/bronchoscopy under anesthesia. These are annual tests for the clinical trial.
He is breathing rapidly and I am tracking temp, oxygen, pulse, and status every 15 minutes. Why? Because I’ve seen this before. I have a sinking expectation of where this leads. I can hope and pray that it won’t, and ask you to pray with me, but that doesn’t alleviate my responsibility to track and care and analyze.
I am an MPS mother and that is what we do.
That is how we keep our child relatively healthy and alive. Why? Because we’ve seen too many deaths and know too well how many funerals are likely in our future.
So if we ever seem overbearing or like we’re over-analyzing or over-diagnosing, picture the PICU and the fervent drive to the emergency room, those children who’ve passed in their sleep, and the heartache we’ve known.