As I lined up the third oximeter on the wool carpet in “The Ward”, I thought about how my life might very soon be all about this: 3. All about 3 oximeters monitoring heart rates & O2 sats across 3 beds. All about 3 children sleeping in what would otherwise be a living room, because on 3 nights a week there is a nurse here watching them & monitoring them throughout the night. 3 kids needing nursing. 3 trachs- there- SAID. 3 trachs is what I am told may be the future. 3 trachs I will monitor, clean, protect and mother.
Central apnea that is persistent beyond infancy, beyond the age of 3, may one day injure her heart, limit her functioning, limit life. Am I afraid of a third trach, trach #3? No. The trach is NOT what I fear- I more fear NOT getting it and having needed it. I fear waiting too long to act and having a child whose heart is weakened who then needs to have a trach placed, under anesthesia, which is tougher on you when your heart is weak. I fear walking into her room some morning or naptime, finding her blue, or cold, finding that the apnea persisted long enough that she could not recover. I fear the doctors deciding to continue to wait until there is no more waiting when the damage is done- waiting because they think 3 is too many for any family, sacrificing the health of the one for the perceived “good of the whole”.
Trachs are hard. Protecting an airway of a preemie from illness, insult, can be hard enough when there’s no direct access for disease or hazard to infiltrate. Once you provide the pathway, adding the life-saving medical device, you increase the risk, provide the avenue for easy-access. But trachs save. Trachs provide a stable airway for 2 of my children to breathe, making LIFE possible. If its a necessary support for #3, I say “bring it”… but can we wait ’til spring?