Monday, August 05, 2019
Had a rough week last week. My son was in the PICU with Bronchiolitis, a lung infection, which led to them discovering he has some sort of metabolic disorder. They aren't sure which metabolic disorder he has yet as the test results will take 2-3 weeks to come back but he has all the signs of having one from a clinical perspective. They're even talking doing a genetic panel on me since I have a connective tissue disorder to ascertain if the clinical diagnosis I received 27 years ago is genetically accurate since it has a 50% chance of being passed on to my children if it is, and that could help narrow down what disorder he has.
He's home now, but will have residual effects from the infection for up to 6 weeks (poor baby has an awful cough) and has many outpatient appointments for the metabolic disorder. For the time being he has an oxygen monitor on at night since we're so terrified of him stopping breathing again. We hopefully find out tomorrow when he can go back to daycare - in the meantime Nana is watching him. I accidentally left my phone in my husbands car this morning, though, so I am super anxious about not being able to check on him.
I gained back 4lbs of the 8lbs I had lost since I was eating hospital convenience food and spending around 12 hours a day just sitting next to his crib holding him. I am sore and tired from the immobility but am ever so grateful I have a job that would allow me the week off (even unpaid) to do so. I will be going back to starting slow to reintroduce myself to exercise after such extreme immobility. Today I am subbing in a yoga class for a coworker in the afternoon, and I will be working on the recumbent bike tomorrow.