Stacy had another breakdown today. I think it’s just a culmination of several things piling on top of one another.
We’re glad to have James home, but it’s a lot of work for the two of us to handle. Unfortunately, with me back at work, Stacy has become James’ primary caregiver, which means she is up and down most of the night to give James his feeds, and meds, and suctioning when he needs it. The lack of sleep is starting to take a toll on her.
In addition to Stacy running on fumes, tomorrow is the 1-year anniversary of Jackson’s passing. In case you are not aware, Jackson was our first son who suffered from Trisomy 18 in which a fetus somehow receives three copies of chromosome 18 instead of the usual two. Trisomy 18 causes developmental issues, and life-threatening medical complications. Only 50% of those with Trisomy 18 are born alive, and of those that do make it through the entire pregnancy, only 10% make it until their first birthday. Unfortunately, Jackson was one of those that didn’t make it. Stacy told me that “we couldn’t do anything to help Jackson live a better life, but we sure as hell are going to do our best to give James the best life that he can have!” That is our mission. James has significant disabilities (cerebral palsy, vision and hearing issues, no suck / swallow, G-tube feedings), but we are determined to give James his best possible life.
To top things off, James had an appointment with the ENT (ear, nose and throat) doctor today. The doctor brought up the possibility of putting a trach in James to help manage his secretions better. That seems to be one of James main issues. Since he is unable to suck or swallow, he needs frequent suctioning of his nose and mouth to remove secretions since he is unable to clear them on his own. Trach, which is short for tracheostomy, is when a surgeon makes a hole through the front of the neck, and into the windpipe, or trachea. A tracheostomy tube is place into this hole and is used for breathing and it can also act as a passage to better clear the secretions out of James’ throat. A trach was mentioned in passing when James was in the NICU by one of the nurses, but this is the first time the ENT had brought it up with us. This is something Stacy and I will discuss further, but we’re not sure if we want to go this route just yet.
