Counting The Hours Before My Son Leaves For the Hospital
Tonight marks his third sleep study in less than a year
It’s the morning before my son leaves for the hospital with his papa for a planned overnight stay. This will be his third scheduled sleep study in less than a year, and 27th night in a hospital since his birth 20 months ago.
Ludwig, my son, has a rare form of apnea called primary central sleep apnea, combined with obstructive apnea syndrome and hypoxic episodes. He was born two months premature and his life has been filled with endless medical appointments and assessments. I have written about it at length in another article.
His apnea is caused by a brain malfunction that disrupts the signals from his brain to his breathing muscles. My son stops breathing in his sleep. I can see when this happens and there is nothing I can do about it other than give him the oxygen the doctor told me he needed. There is nothing I can do to fix my son.
We’ve had to tape an oxygen cannula to his face every night for the last five months hoping it would help him when his oxygen levels go below the norm of 95% saturation and below the “this is really not ok” saturation of 90%. Every night when he goes to sleep I hope he will wake up the next morning. Every night this is what I think about.
He wears a pulse oximeter at home. It has gone off in the night flashing a red warning sign telling me my son is not breathing. It’s something I’ve been familiar with since his birth as we spent his first 21 days of life hearing the beeps and wails of this machine. I still hear those alarms in my head and remember the gut wrenching feeling they installed in me.
If Ludwig fails this test tonight, meaning his brain is still malfunctioning, then we go on to have his second MRI. Because of his age, it requires him to be sedated and intubated. He had a hard time waking up from the first one and for a brief unsettled moment I thought we might lose him.
For the last few weeks I have been telling myself he will pass this test and it will show his brain has healed from his premature birth, his brain is perfect. My son is perfect. He embodies everything that is pure and good in life. He loves unconditionally and shows his love without hesitation.
He’s a beautiful, happy, sweet toddler. I love him, I love his life and what it has given me. I want him to be ok. As I type this I am watching him play with his toy fire truck, saying “hi” over and over. He learned how to say this word yesterday and hasn’t stopped ever since. All around the house it’s “hi” to his milk cup, “hi” to his stuffed hippo, “hi” to bath fish and everything in between. He even claps for himself when he notices mama and papa giving him an approving smile for his new language skill.
It’s exactly six-and-a-half hours until he and his papa make the 45 minute drive to the hospital. Until then, I will just sit here and enjoy the sound of his sweet baby voice when he says “hi.”
