Thankfulness for machine at a time

I know that the title sounds a little Dr. Who-ish and maybe one might expect a Dalek or other type of machine to hop out in front of you, but truly as a parent of a medically fragile child, one learns to not only appreciate but rely on the machines in our life.

It is ironic to read about those who sleep away from their child for the night find it quiet...the whoosh of the ventilator becomes white noise to us, ever present. It is comforting, know that your child is receiving the breath of life...through the night while they sleep. Their body is resting, strengthening while the machine does the work, filling their lungs.

The suction machine becomes ones closest friend. Without the ability to cough up secretions fully, my son is in danger of choking, blocking his airway. The suction machine clears the secretions quickly and efficiently...many times people don't even realize what has happened.

Last night, Javad really started showing symptoms of a cold. Yesterday he was pretty punky, wanting a wash cloth on his head, not really interacting, but last night it came on full force. I was suctioning every, what felt like, five seconds. Wiping his nose and his face, surrounding him with pillows, blankets, anything that brought him comfort. I know how he felt...I am still feeling it, but as I was up and down during the night, I realized how thankful I am...I am thankful that I have this little ICU in my house, thankful that I can reach over and give him a boost of oxygen, thankful that I can suction as needed. When he was a baby, I didn't have all these options. This cold would have given us weeks in the hospital, but through decisions we made of a trach and ventilator, we have the option to handle these things at home.

I am in love with my son...he is sweet, loving, and adorable, even when sick. In a weird way, now that he is sick I can kiss him because I am sick too. We can hold hands, the whoosh of the ventilator in the background and wait this one out...because we can...we have the technology and we use it one machine at a time.



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