Allergies?
Crazy weather?
Seasonal congestion?
Typical sleep apnea?
Pneumonia?
COVID-19?

The night panics are real over here. Anyone else dread going to bed at night? Margs has been struggling in her sleep since Monday. We gave her an Albuterol treatment Tuesday before bed to see if it would help. That was the last night I got any sort of sleep.

Wednesday we repeated the Albuterol, but she ended up throwing up and having some pretty nasty obstructive sleep apnea the rest of the night. She’s getting 20-25 breaths per minute at this point, which is better than the 5-10 she was getting the last time she was hospitalized. But it is amazing how a night like that can be such a trigger for all the feelings and fears that we have had the last two years.

Margs has airway malacia–it started as laryngomalacia, but after a more invasive scope, they determined she has signs of tracheo/bronchomalacia. The best way I explain that to people is that her airway cartilage just isn’t as rigid, so it has trouble staying intact, especially if she is under the weather, fatigued, or in a relaxed position. -Hence why sleep is such an issue. Basically she’s a very sweet floppy bunny.

When she was about six months old, she had pneumonia and responded fairly well to antibiotics; although the x-ray process for determining that was quite archaic and traumatic. We try to laugh about it, but I don’t really remember being scared out of my mind in terms of her breathing.

  • Look at those little feet!

Shortly before that she had a sleep study done that determined mild sleep apnea. At that point we were just ruling out centralized sleep apnea. About a year later she came down with a cold that intensified her apnea to the point of hospitalization. The extreme congestion paired with her malcia made it so she could not get nearly enough oxygen when she was sleeping. Since then, we have had a nebulizer that we use as needed. She also sees a pulmonologist at our children’s hospital and has had a repeat sleep study. Those results came back as moderate sleep apnea, so we had planned a tonsillectomy for June.

So yesterday we had a telehealth appointment with her pediatrician. He prescribed a few more steroids to get her nasal passages to open up, so her breathing is less obstructed when she’s relaxed. We’re obviously going to try to do everything we can to avoid a repeat of 18 months ago. With that, her doctor also had us take her to be tested for COVID-19. If her results come back positive, we will know we need to act much quicker in regards to getting her monitored at a hospital–exactly what we’ve been working so hard to avoid.

We have been diligent from the beginning about keeping her safe and at home. I’m sure people thought we were being paranoid and ridiculous as, “Kids are barely affected by this.” We just knew it would not be good if she had to fight COVID, or anything for that matter, especially without the guarantee of her typical health team being available, well-rested, or prepared. Those safety nets that we rely on in times of panic are now not a guarantee, and that makes the nights even worse.

This is why you stay home! It has been so disappointing to see how many people are still not taking the stay-at-home orders seriously. There are millions of people just like Margs who cannot handle a respiratory illness or who rely on the hospital for critical care in times of need.

Here’s to hoping we don’t become one of them.