Home aga… just kidding

Discharged Friday 7/30. Readmitted Wednesday 8/4. My boy can’t catch a break.

After rounds of tests from every team under the sun, we were discharged with nothing more than a feeding tube. Brain, heart, lungs, etc all came back clean. We are still waiting on genetics to see if there is a disorder that can explain his inability to eat, but aside from that we were cleared.

Home for 5 days, 3 of which I was away, so I was with him for only 2 blissful days when he decided to stop breathing. Ok, 1.5 blissful days. Followed by one of the worst evenings of my life.

He was eating OK, not great. Maybe 40-50% of his feeds orally, the rest through tube. We were doing well, thinking it was only up from here, until Wednesday. He sounded really gunky, like there was a lot of extra fluid in him. Then he started eating less, coughing and crying in pain intermittently for about 4 hours. Clearly in pain and not happy, we removed his tube thinking maybe it needed to be replaced. We decided to put a new tube in then go see the doc, because the thought of feeding him when he was in so much pain seemed wrong.

Imagine new tube parents, trying to place a tube for the first time. Baby crying in pain before even attempting the insert. Needless to say, it didn’t go well, and Marco started pausing his breathing. Briefly holding his breath, then stuttering back. Forget the tube- it was time to go. We rushed to urgent care, debating the whole way if we should go to the ER instead. He was still breathing, so we chose urgent care (what if it was just reflux and we were over reacting?) He puked on the way there and our hearts were racing.

Got to urgent care, picked him up, realized with horror that he was blue. He wasn’t breathing. The team was amazing- within moments they had him on oxygen, called 911 for a transfer, and got him breathing again.

At the ER he was put on higher oxygen flow and they began examining him. Mid examination he turned blue again- as the team sprang into action to intubate with a breathing tube, I lost it, ran from the room and was led to a private space where I could bawl with my husband holding my hand.

Why was this happening? To date, through all the drama, we could at least rely on his steady breathing. It was so unfair.

Turns out, he picked up a common (insert favorite swear word) cold. That’s it. We’re over here worried about COVID and RSV, then Mr. Sniffles comes along to knock him out (rhinovirus, for those wondering.) They think the extra mucus made it hard to drink and breathe. With his weak immune system (white blood cells have been low since birth) and preemie lungs, it wiped him out quickly.

We’re now readmitted to the same hospital as last week, with a different team. Because he is intubated, regular patient floors can’t take him, so we’re in the NICU to wait out this cold. Hopefully no more than a few days- but more likely at least a week.

I should be happy that it’s just a cold, but I keep thinking… if a common cold can do this to him in the middle of summer, how are we going to survive the winter?