the events that transpired

Sebastian was hospitalized for twelve nights after he nearly choked to death on his pasta dinner. Here is what happened.

I came home from work and wasn’t in a great mood, so I kindly requested that I get some alone time to make the kids their food. My first instinct was to grab the pureed lentils out of the fridge…but I saw a box of pasta sitting on the counter from a meal I wanted to try for the kids. So I closed the fridge, and grabbed the pasta. (In hindsight I regret this choice x infinity)

I got the kids’ meals ready, lookin’ all cute on their plates and even photographed them all with their dinners, and then sat in front of the boys to make sure Sebastian wasn’t having any trouble. Le sigh.

When he started eating quickly, I rotated his plate so he’d eat some chicken instead. Sebastian used to eat some things on his own, but for the most part we feed him. If he gets too excited, he tries to scarf everything down, and that is what I fear happened. I cut his pasta in half when I noticed he was a bit too eager.

Because of his esophogeal atresia that he was born with (VACTERL) we have to be extra cautious about his eating. His esophogus might be too narrow one day and he can’t handle big bites or thin liquids.

I immediately noticed when he started fussing and angling his head upwards, sucking in air. He’s done this before, and back blows were previously successful. I yanked him out of his high chair and started gentle back blows. He acted uncomfortable and continued his ragged breathing, so I did them a tad harder. When I noticed his body go limp, I reached into his mouth, but his jaw locked and it hurt.

Daniel took over. The back blows did nothing. We believe we loosened the food just enough to cut off his air. He was still limp and turning blue. This is when we ran outside to get my mother in law, who was asleep in her RV. We weren’t thinking clearly enough to attempt any rescue breathing ourselves yet, and she’s a volunteer firefighter. That was our thought process.

When we couldn’t wake her up, Daniel set Sebastian on the hood of my car and administered CPR. After about a minute he exclaimed that Seb was breathing. He swept a finger through his mouth, too, and pulled out a piece of food. It was ragged and weak, but he was breathing. My mother in law came out and took Sebastian from Daniel while I finished talking to the 911 operator. I was screaming so much into the phone…she kept asking to speak to Daniel.

Trigger warning: obscured CPR

Disturbingly enough, our outdoor camera recorded this footage. When I reviewed it later to see how long Sebastian was possibly without oxygen, I had to mute the audio. The Christmas lights hid his body from view, but the screaming for help was too much for me.

Meanwhile, Alaric was having a blast in his high chair, eating his food, and my poor Lila was running around behind us, scared and confused. I remember telling her to go back to her brother (Alaric), and that everything was going to be okay? But the last thing I remember before leaving the house to get in the ambulance with Sebastian is her face crumpling into tears. Now she gets scared when Seb coughs while he’s eating. The other day she asked me what I say when I’m scared. I told her I wasn’t sure, what does she say? She told me that I say, “Oh my gosh oh my gosh oh my gosh.” 🙁

Sebastian and I rode to the hospital in the ambulance. I recounted his history multiple times – theVACTERL, the TE fistula, the tracheomalcia, etc, etc – and explained what happened. They wanted to do more back blows but I told them I was afraid to do that because it’s what landed us in this predicament. After Sebastian threw up some more food a couple times, his oxygen levels went back up to normal, but he was still retracting when he breathed (you could see his ribs when he inhaled).

After about an hour or so in the ER, he went into surgery. They were concerned about his breathing and the fact that he could not tolerate being on his back (he was uncomfortable and his oxygen stats dropped).

From what I was told, they were hoping they’d find a piece of food in his lungs that they’d suction out and then he’d feel oh-so-great.

Ya, no. The ENT came out of surgery after…3 hours? It felt like 3 hours. Maybe it was 2. It was 1AM. He seemed shook up and anxious. The doctor told me there was so much food in his lungs. Pasta, and green stuff (pesto), and they got most of it out but there still might be some in there. They were baffled at the amount he inhaled, which is why it took so much longer than expected. Sebastian also coughed during the procedure and began choking on more food. He was without oxygen and the ENT told me, “he could have died.” He could have died…again.

I didn’t tell my family that right away.

We were rolled into the PICU (pediatric ICU) together. His former PICU doctor and our absolute favorite PICU nurse welcomed us, and for another hour maybe (what is time?) people asked questions and checked vitals, etc.

A few hours later he vomited up a chunk of pasta with a lot of phlegm, and then a few hours later some more phlegm, and that was it. The rest of our stay was as if he, once again, had pneumonia.

Sebastian sounded extremely congested and had a nasty cough. He just wanted to be held, and who could blame him. We manhandled him trying to save him, and then he was poked, tubed through his nose, tubed down his throat trying to save him again. Ouch.

The first few days I was an emotional mess (duh). Plans kept changing, I saw so many different teams, there was so much information. Unlike the last couple hospital stays, Daniel and I swapped nights. I kept getting overwhelmed with all of the tests (esophogram, swallow study, endoscopy, pH probe, respiratory treatments, NG tubes, IVs, Xrays, etc) and then frustrated when they still didn’t have an answer…and then upset when Seb failed his first swallow study. Daniel was my positive rock.

The NG tube is a feeding tube that goes up through the nose, the pH probe was also through the nose to measure any reflux (none), the breathing treatments were for his congestion (back taps, suctioning, hypertonic), the swallow study is a barium swallow and Xray, esophogram and endoscopy basically send cameras down his throat to look around.

To be clear, everyone was incredibly kind and informative. There were times when we had to wait an entire day for test results, or when someone replaced Seb’s NG tube post-op with a rubber hose (not really but they did accidentally put in a HUGE NG tube that I complained about). Other than that type of frustration, every single staff member was superb and considerate. The Child Life staff were saints.

It got to the point where as soon as Seb heard the door, he’d sit up and crawl as fast as he could to the part of the crib closest to myself or Daniel and cry out. He was so scared, and I don’t blame him. He had treatments every four hours on top of vital checks, IVs, oxygen, etc.

Eventually, after enough rest, he “passed” his second swallow test (barium swallow). He ingested barium in different forms (liquid, nectar, pudding, solid) and they film via Xray how each texture goes down.

It was determined that Sebastian aspirates thin liquids, but could handle purees with soft chunks of food, and thickened liquids. So that’s what he eats at home now. They observed his eating habits and caloric/fluid intake for a couple days before deciding he could leave without an NG tube. Food really does feed the soul. He was so happy his last couple nights, and even hammed it up for the nurses and doctors.

Sebastian has a mild larangeal cleft (his vocal cords are essentially closing the wrong way). A “plumper” has been injected for the time being, in an effort to guide the cleft into the right behavior. Thin liquids travel too easy down this way into his lungs. He also has pharyngeal dysphagia – trouble swallowing. His esophagus basically works as two parts (above and below the scar tissue from his esophageal atresia surgery) and they are not in sync. The lower part of his esophagus isn’t continuing the swallowing process at the same rate. Sometimes food gets “stuck” there, and if he’s eating too rapidly, or hasn’t swallowed his previous bite, it can pile up, thus removing solids from the equation for now should prevent choking. Because this wasn’t an issue before, I am hoping that with time he will heal and be able to eat normal textured foods again.

For now, I bought some thickened bottled water (and so did my cousin, thank you!) and some thickening powder for his milk, food, and sometimes juice (because c’mon, he deserves it), as well as “stage 3” foods for when we are on-the-go or as “dessert.” Stage 3 is the level of baby food he can handle (pureed with small chunks so he continues to practice chewing).

Sebastian is back to his darling happy self. We have new routines where he is fed his milk via spoon – no more bottle. If his brother is eating something he can’t have, we leave the area. If anything has any liquid to it, we add some thickener. For example, he isn’t even allowed to have fruit (except bananas) because of the juice that is released with every bite.

Daniel has been making him pureed eggs with lots of butter and avocado in an attempt to get his weight back up – and it’s been working! I think Seb’s tracheomalacia will keep him on the slender side for a while.

Close monitoring and prep is key.

Did I leave anything out?

Thanks to everyone who sent supportive messages, checked in on us, wished me a happy birthday :), and sent us gift cards. You are a blessing and we could not have done any of it without you.

Seb, Lila, Al

roxy

2 Comments

  1. Oh, this poor little dude – and all of you, what a stressful, terrible incident. I’m so glad he’s doing & feeling better & that you have some answers as to how to better prevent these issues going forward. Sending you SO much love as he continues to recover & gain back his strength.

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