Hand to Hold's Official Blog: Written by Parents for Parents

From NICU to PICU, Our Story with RSV

When my former NICU baby was 22 months old he landed himself in the PICU for RSV and bronchiolitis. He had hospital stays post-NICU before, but this was the first time he was admitted to the ICU. Oh we knew that he was sick. He went to the ER on Saturday night, the pediatrician on Monday morning, and his daddy, who is a PA, checked him numerous times throughout the week. No one suspected RSV that late in the year, but NICU babies can be unpredictable like that.

The whole experience made me realize you can know your child well, care for him continually, take him to the doctor when you’re supposed to, and still be surprised by the seriousness of a situation. As a complicated NICU kid, my son’s compromised body systems bring on one not-so-lovely surprise after another. It’s exhausting. It’s easy to lose heart when I dwell on the extent of his medical needs and my inability to meet all of them. What I not only learned, but experienced, from this hospital stay was that we can only do one day at a time.

So that’s what we did. One day at a time.

The next day was a long day. Nathan got very little sleep. He did lots of flipping around in bed, getting tangled in wires, and endless whining. His oxygen was in the 80s that day. But that evening he managed to rip out his oxygen cannula. I was in the room with the nurse when it happened. Both our eyes went straight to the monitor where we expected his oxygen levels to drop like they had early that very same morning. Instead the monitor read around 98. We looked at each other with raised eyebrows.

Nathan looked at me. His expression clearly said, I DARE you to put that thing back in. He promptly stuck his thumb in his mouth, closed his eyes, and fell asleep. Finally.

By the time the nurse came back with a new cannula, he was fast asleep. It was my turn. I looked at the nurse and DOUBLE DOG DARED her to put that thing back in (in the nicest, sweetest way I could muster of course). And since his oxygen levels were still above 94 the whole time the cannula was off, she agreed.

That was the last flurry of activity as I lay on the super small, super short couch-bed trying to come down off the last 24 hours. It was finally quiet in the room. My heart was not quiet though. The pace of my heart still felt ICUish. Like I should be on high alert. It wasn’t high alert time anymore though.

I needed a pace that was slower.

A pace that was slower than the respiratory therapists running through the halls in response to a code blue.

A pace that was slower than the list of worries churning through my mind for my boy in the hospital, and my boy cared for by friends.

I  needed a pace that was slower than the scroll of my Facebook page, which was my companion and my entertainment during that day alone in room 225.

Be still.

I began to listen to the, quieter now, beeping monitors.

I began to listen to the breathing of my son. Still rapid, but no longer labored.

Then I listened to my own breathing. Slower than his. Beginning to calm.

I needed rest and renewal. I was in the ICU instead. The most un-relaxing place on the planet (aside from a war zone). Eventually I fell asleep too.

Things can change on a dime.

The next day Nathan pulled out his feeding tube and tried to crawl out of bed. He was a problem patient, which worked to his advantage. He got to go home a day early. Just look at that mischievous face.

Sometimes, as parents, we are surprised and overcome by the seriousness of our child’s illness. RSV can be unexpected and scary. But we always know by their behavior, when they are feeling well again.

 

crawlingoutofbed

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grief, NICU, grief during holidays, bereavement

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