I really will get back to writing about this PT thing. I’m so very excited about it. And for a while, that was enough to stave off my anxiety.

No longer.

I try to tell myself that Mr. A is twice as big, more than three times as old, surely more than four times as strong, and five times as amazing as he was when he last had surgery. But I’m so very scared.

The first time A was intubated was shortly after birth. The first time he was extubated was not even a day later. Shortly after I’d been kicked out of the NICU, I got a call in my room. It was the neonatologist, telling me not to be alarmed, but they were going to have to re-intubate him, so I shouldn’t be surprised to see him on a vent (but it wouldn’t be the oscillating ventilator, just a regular one). I’d read up on preemies, what with being told I would likely deliver at 26 weeks, so I wasn’t all that shocked. Two steps forward, one step back, blah blah. So I went to his next cares, and was indeed surprised. Because no, he was not on the vent. Yes, he was working hard, but he was holding his own (with the help of the Vapotherm).

The second time A was intubated was when he was just over 2 weeks old, for an MRI. He was extubated immediately after, with no complications.

The third time A was intubated was on his one-month birthday, when he had his first surgeries. They couldn’t extubate him. They tried twice, and he extubated himself once. My husband and I walked in one day to find him grey, surrounded by doctors, nurses, and staff, while they tried to replace his tube. It was awful. A week came and went, and many concerns were raised. But, I’m somewhat ashamed to say, I wasn’t all that concerned about the vent. Yes, I hated that I couldn’t just pick him up and hold him. But he’d gotten off it twice before, he could do it again. And it was becoming clear that something was wrong with his gut, as he still couldn’t handle even a trophic feed. I was more worried about that–worried that they’d seriously fucked something up during surgery. (This was when one neonatologist informed me that A would never be on full feeds. I countered with, “Well, he was, prior to surgery.” This news surprised him, but he came back with, “Sometimes kids with syndromes just get worse.” This was the first–but not last–time I felt like medical professionals weren’t doing what they could for my son and were not interested in doing any more, because of his unique chromosome. I mean, maybe sometimes babies just get worse, but when you have an intervening event, such as–oh, hmm–major open abdominal surgery, maybe you shouldn’t just chalk things up to a few missing genes.) Then A began having frequent bradycardia episodes, and they eventually theorized that the tube was irritating his vagal nerve. They yanked it for a final time, and it worked. All told, he was intubated for about 10 days.

The fourth time A was intubated, he was 4.5 months old, and having his second round of surgeries. I was so eager for the Nissen, as it would (I assumed), save his life. And let me tell you, it did. I haven’t had to give my sweet baby CPR since he got his Nissen. He only coded once afterwards, and it was because of the damn tube. (It got jostled during a transfer from his bed to the table for a fluoroscopy, and was kinked or pressed up against the side of his trachea or something. Repositioning the tube was really all it took, and the code was over almost as soon as it began–the first responder was, by pure coincidence, our favorite fellow, who wasn’t even working the PICU that day, and who said, “Oh no, is this A??” upon seeing my baby, immediately making me glad it was him, not just for his expertise, but because he recognized and cared about my child but still, one of the worst days of my life. He took charge and saved my A.) But once again, they were unable to extubate him. What should have been a simple stay turned into a 35-day nightmare. He caught pneumonia from his vent. When they were finally able to extubate him, he was on such high BiPAP settings that they were unable to feed him (it forces air into the tummy as well), and his PICC line (which we’d had at home for 2 weeks, and then was changed and then changed again) got infected and he got septicemia. And I kept trying to explain that he was mad, so very mad, and in pain, and that’s why his breathing was so labored. And I was ignored, until finally I wasn’t. (Which I have written about before.)

So I will be a better advocate for him, this fifth time of intubation. And he is bigger, stronger, older…and I just hope, so very, very much, that it will be enough.

We have to check in at 6am on Monday. I don’t know how I will make it till then, and through the surgery itself. We have never been called back to the recovery room, since he has always been sent back to intensive care, following failed extubation. Please please please, let us see that room.


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