Apr
19

Dueling Banjos.

I must admit, I am exhausted. The last few days were harder to handle than some of our other NICU catastrophes (collect them all!) because things had been going so well. Simone had come off the high flow and was on a regular nasal cannula. Her ROP was improving in one eye and stable in the other. She had a negative MRSA swab. She was awake more, goggling at the world, and she was starting to learn to breastfeed. One of her nurse practitioners had called to say goodbye before leaving on a three-week vacation, figuring that by the time she returned, Simone would likely be discharged.

When I left Wednesday evening the oxygen was on the lowest setting, and I was making a mental list for a planned IKEA trip to buy SVARSLIGS and such for the—gulp—nursery. The next morning, I ran an errand, arriving at the NICU around 10. All hell had broken loose, in the form of seven severe spells of apnea overnight, one of which required Simone to be manually bagged. This was extremely uncharacteristic. Simone is, in the words of her medical team, “very mature” neurologically. While in a 16-year-old this might manifest itself in inappropriate crushes on professorial types, in Simone’s case it means she holds her own pacifier, interacts with people, roots and latches, and—more to the point—doesn’t forget to breathe. Her apneic spells have been mild and related to her (dreadful) reflux.
It would have been lovely to get a phone call in the night when the wheels first came off, but bygones—Simone had been returned to the high flow nasal cannula and a septic workup had been started. A nurse practitioner—not one of Simone’s regulars—came to talk to me, and within 45 seconds I was in tears.

Quoth she:
•Simone could have an infection, but she may simply have gotten tired from her two days on the regular cannula, showing us that she failed her trial off the high flow.
•If she can’t come off the high flow, I should be prepared to hear about a tracheostomy.
•Her lungs don’t look that bad on x-ray, so there may be a problem with her airway instead, like tracheomalacia. Probably she should have a bronchoscopy next week.
•Also, looking at her growth charts, her weight seems to have plateaued. She was only at 3% on the preemie charts before, and now she’s straying from that curve.
•Probably that means she is expending too many calories breathing, and hey, have you met my friend, MR. TRACHEOSTOMY?
•Of course there is also the possibility she’ll need a G-tube, which would help her get the nutrition she needs without losing as much energy.
•But we have a good FOUR TO SIX WEEKS to think about all that.
•Now, how about a nice lumbar puncture?

I was overcome. How did we go from “hurry up and find a car seat” to “buy stock in home medical equipment?”

I try not to cry in front of the nurses and doctors, because I find they are more likely to keep you completely and honestly informed if they don’t think you’ll fall apart at the mere suggestion of unpleasantness. But this time I couldn’t seem to get myself under control. Silence was the best I could do; I stood in my sterile gear for the spinal tap, tears streaming into my mask.
Simone didn’t respond well to the Morphine, so they gave her a dose of Narcan and the nurse practitioner reached over and turned her high flow up to three liters. A hissing sound filled the room, and I thought “I don’t remember high flow being that loud. How quickly we forget!” Two more doses of Narcan and half an hour later, as Simone continued to falter, it was discovered that the hissing sound was her oxygen escaping. When she reached for the dial, the NP had disconnected a tube. At that point I wanted to kick the whole world in the shins, but instead I watched as a sweet, nervous nursing student attempted to eke a few drops of spinal fluid from my daughter. With a needle. In her spine.
Simone’s CRP came back elevated, indicating infection, and she was started on IV antibiotics. They weren’t able to get enough urine for a urinalysis, just a few drops for culture. I went home and slept like a dead thing.

By yesterday Simone seemed noticeably better, though her cultures were coming up negative. Our favorite NP—one who is especially fond of Simone—had taken over her care. I accosted her immediately and rattled off what I had been told by Wednesday’s NP. My side of the conversation can be summed up like this: WTF???? Her side was more helpful.

Quoth she:
•It doesn’t make sense that Simone simply tired out and “failed” the regular cannula. If that were the case, her O2 needs would have been creeping up rather than going down consistently before the Night of the Seven Spells. The apnea was probably due to a UTI. Even though nothing grew on the culture, the fact that her urine was cloudy, that her CRP was up, and that she began to improve dramatically with antibiotics is suggestive.
•There is no reason to believe that Simone will be unable to come off the high flow and need a tracheostomy. It is possible, yes, but not probable.
•There is no evidence that there is anything wrong with Simone’s airway. Her known reflux is much more likely to be a cause of intermittent spells than is a floppy airway.
•Simone’s weight hasn’t “plateaued.” She is recovering from busy weeks transitioning to a crib and off the ventilator. G-tube schmee-tube.

As you can imagine, I liked this conversation rather more than its counterpart from the previous day. I am trying not to be upset about the communication breakdown, the (undoubtedly well-meaning) alarmism, the DISCONNECTED OXYGEN TUBING—and for the most part I am succeeding, mostly because my relief doesn’t leave room for much else. Simone’s CRP has started to go down with antibiotics, and she has had virtually no spells since Thursday morning. She is on high flow with room air, and was active and googly-eyed this morning, the cotton batting securing her scalp IV perched atop her head like a fancy Parisian hat. I don’t understand how it is possible to have a bladder infection without a positive culture, but then I can’t do cartwheels or like physics either: some things remain beyond me.

That’s all for now. More as events warrant.

By Alexa | Posted in Ceci N'est Pas Une Ecrivaine |