Lung problems and Pompe test a mother with another sick child

Last week, both of my children ended up sick. It started off on Memorial Day when my 5-month-old son, Kyree, developed pink eye. The doctor’s office was closed on the holiday, but I got him seen the next day. Aside from the pink eye, he was acting completely normal and had no other cold-like symptoms.

The doctor ended up prescribing him an eye ointment, and I thought all was well. But that wasn’t the case. Two days later, my oldest son, Cayden, who is 5 years old and has infantile-onset Pompe disease, wasn’t acting like himself. He slept in pretty late that day, which is uncommon. I went into his room to wake him and take him off of his BiPAP machine. After I did that and changed his diaper, he told me he was still tired.

I thought that was odd, but I wasn’t too concerned yet. I let him sleep for another half-hour while I mopped the floors. Once I was done with that, I went in to wake him again and took him out to the living room. While he was there, I went into my room to feed and change his little brother while Cayden played on his iPad.

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That’s when things started getting strange. I didn’t hear Cayden talking for a few minutes, so I ran to the living room to check on him. He was sleeping yet again. I woke him up for the third time that morning and noticed his lips were very pale and his toes were tinted blue. I then checked his oxygen levels with his pulse oximetry machine, which showed that his oxygen was around 82% to 85% when it should be about 94% or more.

Thankfully, Cayden was fully awake and responsive. Though I was panicking on the inside, I didn’t want to freak him out, so I remained calm and called for an ambulance. It arrived fairly quickly, and the emergency responders began evaluating him. He had a fever and a high heart rate, and his oxygen still wasn’t perfect.

Because of his symptoms and his Pompe, the responders and I thought it’d be best to take him to our local children’s hospital. Kyree and I followed in my car, getting there as quickly as I could.

Upon our arrival, the doctors said it’d be best to keep Cayden there so they could run tests and monitor him. I agreed with this decision, but it wasn’t easy.

It turns out that Cayden had a virus called adenovirus, and the X-ray of his lungs didn’t look so great. Fortunately, he wasn’t as sick this time as he was when he had pneumonia and another time when he had respiratory syncytial virus. But he was still sick enough that he needed to stay in the hospital for a few days.

Because I’m a single mom to both boys, I was forced to split my time between them. It wasn’t an easy task by any means. Kyree and I were staying at the hospital all day until it was bedtime for Cayden, then we’d go home for the night and come back in the morning to repeat the whole process. Cayden was upset, which broke my heart, but it was for his own good.

Kyree still wakes up through the night. I knew Cayden needed his rest while he was sick. That wouldn’t be possible with a crying baby at his bedside. There also wasn’t really a place for Kyree to sleep at the hospital. There were only a single-person pullout couch and a recliner, and neither of those options was suitable for a baby his age.

With Kyree being breastfed, I have trouble getting child care for him. He’ll take a bottle of pumped breast milk, but I’m not an oversupplier with him as I was with Cayden, so I have only enough milk to last him about one night.

This dilemma is the hard part of being a single mom. My boys only have me and a few other family members for regular care. But with everyone working and having their own lives, I’m left to do it almost completely on my own. It’s not always easy, but I always make it work one way or another.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.