Backstory, Part Five

Fairly early into our stay at Hospital One, it became clear that we were in this for the long haul. We were told to expect it to take two months for Elijah to reach the weight needed for surgery, and another two weeks after the surgery before we could go home. So we settled in as well as we could. We moved from our tiny hospital room into a borrowed motor home in the parking lot. Dan went back to work, and I spent my days at Elijah's bedside, pumping and waiting to hold him. The nurses took pity on us, and moved us to a wall of the NICU where we could have a little more space to ourselves, and suggested that we bring in some things from home to make it more nursery-like. I hung a few of the Winnie-the-Pooh decorations that had been in my own room when I was a baby, and a beautiful quilt that our midwife made for us. OT said reading to him would be good for his development, so we brought books from home--our copies of If You Give a Pig a Pancake, and Randy's Dandy Lions still have the ubiquitous hospital identification sticker on them--and cds and our own cd player, so that he could listen to music when we weren't there. I did kangaroo care with him almost every day, and Dan came straight to the hospital after work each night to hold him.

It seems like that calm stretch lasted for much longer than twenty days. But I guess it didn't. On Christmas Eve, we were excited because Elijah was up to five pounds, four ounces--almost exactly a pound above birth weight. But over the course of the day he desatted frequently. My mom's journal shows that the 28th was a bad day as well--bad enough that the soft-spoken NICU nurses were yelling at each other as they worked to get his heart rate and respirations back up. Over that same time period we were struggling with the tremendous stress of having one of Elijah's nurses disregard our wishes (and the OT's recommendations) and start trying to bottle feed him--a course of action which can contribute to the extreme oral aversions often found in kids with PRS.

Then things seemed to be get better again. Elijah was "sitting" in a swing for periods every day, and he seemed to love looking at the mobile and being gently rocked. He was much more alert and attentive than he had been up to that point. On January 3rd he had his worst episode yet--desaturation, bradychardia, followed by a prolonged irregular heartbeat, followed by tachychardia.

By the 10th, things had gone downhill to the point where Elijah couldn't sit in the swing any more. He wasn't allowed a pacifier anymore, in spite of the fact that he was frantically looking for something to suck on. I couldn't do kangaroo care with him anymore. In fact, I couldn't even hold him any more, because moving him caused violent desaturation.

We spoke with the doctor about it, and he seemed unconcerned. Because the nurses weren't charting most of Elijah's episodes, he didn't have a clear picture of how sharply things had gone downhill. When pressed, he did admit that no, sats of 14 and heartrates of well over 200 weren't good. But at the same time we were hearing from the members of our PRS group--including a pediatrician whose child has PRS--who were telling us that it was worse than not good. We were hearing from the grandmother of one PRS baby whose doctor kept assuring the family that this desatting was normal--until the baby's heart stopped. Short of that, we were starting to think about brain damage, and heart damage.

The hospital we were at saw one or two PRS cases a year, and our primary doctor had seen very few of those. The complete lack of continuity in nursing care further complicated the situation. We really liked most of our nurses, and received good, compassionate care from them. But we couldn't hang on to them.We never kept a nurse for more than four days in a row, and we usually only had them one or two days. Every nurse who had him started out with her own ideas of what was appropriate care for his situation, and ended by telling us how complicated he was, and how, because I was there with him all day every day, I was really the best source for information on what worked for him and what didn't as far as positioning, frequency of suctioning, and so on. But then she was gone, and we had to break in a new nurse.

We were scared. Scared for Elijah. Scared for his heart and brain. Scared for his life. And scared to advocate for him any more aggressively than we were because we were afraid it would damage our relationship with the doctors and nurses, and hence--though unintentionally on their parts--lower his quality of care.

On the 11th, Elijah's OT called a care conference (a meeting where as many as possible of the people involved in the patient's care are present--in this case, the attending physician, the current nurse, the OT, the social worker, and the family) to address some oral stimulation issues. We screwed our courage to the sticking-point, and seized the opportunity to try to calmly and politely explain the decline we were seeing in Elijah and our concerns for his health.

I won't go into all the details. The two-hour conference was not particularly encouraging--I spent a good deal of it trying not to cry, as Dan, ever calm under pressure, advocated for our son. But neither was it as discouraging as it could easily have been. All of our avenues of approach were shut down except one: The attending physician was going to consult the surgeon who would be doing the distraction--who we had been trying feverishly to contact for days, but who was out of town--to see if there was any chance of performing the distraction before Elijah (currently less than six pounds) reached the eight pound minimum. We left planning to start asking for a tracheotomy if the consultation didn't produce any results, and praying that Elijah didn't sustain any lasting damage in the time it took the surgeon to get back into town. In desperate need of a break from the hospital and a chance to burn off some of the accumulated tension, we headed out to get some dinner.

We were in the car, not even out of the parking garage yet, when Dan's phone rang. It was the attending doctor. He'd spoken with the surgeon. The surgeon wanted to perform the distraction in two weeks, and he wanted Elijah moved to his hospital the next day. It was a miracle, I think--the real, honest-to-goodness, a hundred percent genuine article. I still get chills thinking about it: God intervened on our behalf.