May the marathon be with you
Much like a marathon, May 2021 began with a bang, then proceeded to feel like one long and exhausting day.
May 6th, 2021: tired out after a busy morning.
Part one of the excitement started on the 4th, with another uncomfortable Zoom conversation between her social worker, nursing support team and myself. During that call, we discussed our less than the ideal nursing situation, and what solutions the team had in mind moving forward. We talked about eventually replacing our troublesome nurse with 2 others, but I couldn’t shake the feeling that it wouldn’t go as planned. Part two began but did not end on the 6th. I didn’t know it at the time, but something that happened that day would eventually contribute to ending a 2year metabolic crisis-free period (I’ll get more into that during a later post). Let’s take a step back for a moment so I can share with you what happened that day. While Olivia and I were on a Zoom call with her complex feeding team, our housekeeping crew was busy cleaning our place for the first time. During our call, we created a new four-month plan to increase her daily feed volume from 600mls to 1000mls. Because of how poorly our previous attempt to increase her feed volume went, we decided to go much slower this time. Technically the first step of this feed change plan began in April (check out my previous post titled “April 2021: chaos, anxiety and joy” to see how that went). Our next step was to make two adjustments to her feed rate during May without adjusting the volume (one happened on the 8th, and the other on the 24th). Thankfully, our efforts were successful, and on the 24th, Olivia had transitioned from a 1.5hr to a 1hr feed time. Before I get too far ahead of myself on this subject, two other important things happened on the 6th. First being; for whatever reason, the company that provides her IV supplies was experiencing a shortage of injectable Magnesium Sulfate, so her complex feeding team felt that it would be safe to remove it from her TPN. On paper, it seemed like a good idea, but Olivia is constantly pushing the boundaries and making what was impossible possible. Even as I write this, she is still finding new and creative ways to self-destruct. The most dramatic part of that day came almost immediately after our Zoom call with her complex feeding team had ended. Our cleaning crew finished up around the same time, so once they left, we ventured out of the spare bedroom and settled back into the living room. Before I had a chance to relax, my phone rang. As I looked down at my phone, an uneasy feeling began to rise over me. It was someone from her nursing support company with bad news. After hearing the concerns that I had raised on the 4th, they decided it would be a liability to let that nurse continue to work for us, so she was removed from our team that day. I felt relieved but also crushed at the same time. It was a difficult conversation for me to process because I had felt as if I had broken up with our nurse. Things did not happen as I had hoped they would, and as a result, I felt an overwhelming sense of remorse. It was unfortunate timing that it happened when it did because, after the 6th, we were down to one part-time nurse (who couldn’t pick up any extra shifts). Although it could have been much worse, we were lucky enough to secure 8 days of help that month.
(click the photo to see each image)
Our May-long marathon continued relentlessly. Even though we had progressed very slowly with her feed changes this time, we still faced resistance from her digestive system. After her first feed rate change on the 8th, she developed diarrhea by the evening of the 10th. Olivia has a strict fluid balance regimen, so whenever she gets diarrhea, we switch out half of her G-Tube water flushes with Pedialyte (this month was no exception to that). From the 13th-15th, her poops began to thicken up, so I decided to stop the Pedialyte (apparently, that decision was premature). She ended up back on Pedialyte from the 19th-23rd before her pooping decided to slow down again. After her second and final feed rate adjustment on the 24th, her diarrhea returned on the 27th (but surprisingly only stayed until the 30th). On the 19th, I anxiously navigated my way through an appointment with her respiratory doctor at the hospital (the whole time, I feared an impending poop). Olivia’s seating appointment on the 20th was no different. Thankfully during both of those appointments, she managed to avoid a poopy blowout. During her seating appointment, we discussed our options for replacing Olivia’s stroller with a fully customized wheelchair. They took some measurements, let her try out a sample chair and put in a request for the funding of her chair. What followed was a long waiting game (but ill get more into that later). On the 23rd, we interviewed another potential nurse, only to have them ghost us (with no explanation given either). On the 28th, our only nurse showed up to help us salvage the rest of the month. That morning we had a routine blood work appointment at the hospital (which went smoothly, thankfully). After having a brief period to settle in back at home, we had a zoom call at 2 pm with her complex feeding team. We discussed how her recent feed changes went, and then we talked about what the next step of our feed change plan would be. Because of how unique and complex Olivia’s needs are, her feeding team often seeks out my opinion on how we should proceed with changes. It might come off as unprofessional to some people, but it’s a brilliant method for ensuring a child’s complex medical needs are met. As they say, no one knows a child better than their caregivers (this rings especially true for families of rare/complex medical kiddos). We had decided that the next step of our plan would be to increase the amount of food she received in a day, but I’ll talk more about that in my June blog post. By now, you might have noticed that many of my recent posts talk about her abnormal bowel movements. As unpleasant and repetitive as it might seem, it is a necessary part of Olivia’s story, and one day her unique digestive system might offer us insight into how we could end her TPN dependence. For that reason, I will continue to stay curious about what significance her bowel movements hold regarding her overall health.
(click photo to see each image)
By the end of May, we were feeling physically and emotionally drained. Although it felt like I had lost the marathon, I felt a sense of pride knowing that on June 1st, I crossed that metaphorical finish line. With that victory came the understanding that I could finally take a deep breath because the month was over. Don’t get me wrong, May wasn’t all bad. With it came some exciting changes and lots of quality time with Olivia, but I still found myself holding out hope that June would be a better month.
