The “If” is Now the “When”

The “if Garrin gets a tracheostomy” has transitioned to “when” he gets it. 

I’ve gotten second, third, and fourth opinions, and the consensus is that yes, Garrin will undergo a tracheostomy, a procedure where a surgeon creates an airway to be used for long-term mechanical ventilation, as well as a gastrostomy, a procedure where a different surgeon places a tube directly into the stomach that will be used to provide Garrin nutrition that he is unable to take by mouth. Neither of these procedures are ones that we wanted or expected our son to need after having him home for weeks, and it has been difficult to accept what this will mean for him and our family.

The tracheostomy, the more invasive of the two procedures,will most likely require Garrin to remain hospitalized for months to come. Afterundergoing the surgery, he will need to remain sedated and possibly paralyzedfor about a week before the first trach tube change. After that first tubechange, the neonatologists will work to find the ventilator settings that areright for Garrin, in hopes of giving his lungs the best possible conditions forcontinued growth. Once they find the sweet spot, if you will, Garrin will needto be stable on the hospital ventilator for 2-4 weeks before being transitionedto the home ventilator. He will then have to remain stable on the homeventilator for 2-4 additional weeks in the NICU and 2-4 more weeks on one ofthe hospital’s main floors before being moved to a nursing home for children,where he will remain until we are able to secure 24/7 in-home nursing care.

The tracheostomy comes with risks, and there are no guarantees. There are risks with any surgical procedure, and even with a trach, the outlook for a child with chronic lung disease (BPD) and pulmonary hypertension is still not good. A trach will impact the way we live our lives for the foreseeable future. I’m having a hard time with the idea of having my family separated again for months, and I’m selfishly struggling with the thought of having a stranger in our home twenty-four hours a day, seven days a week. I’m not sure if it’s my pride or what, but I feel that as Garrin’s mommy, I should be the person at his side during the night, getting up with him when he needs to eat or have his diaper change.  It’s a lot to process.

The thing that I have to remember is that it’s not about me.  We must give Garrin the best possible chance to overcome the complications that resulted from his extremely premature birth. So really, there is no decision for us to make, and the “if” is now a “when.”

“At some point you justhave to let go of what you thought should happen and live in what ishappening.” ~Anonymous