Based on the comments on this blog from my dear friends, I bought a glucometer through Amazon. I had no idea that glucometers were available without a prescription, or that they are so cheap. The good news is that Nico’s blood glucose has been normal. Also, the additional lab work ordered by our oncologist to test adrenal sufficiency (a.m. cortisol) was normal as well. So at this point the oncologist believes that the hypoglycemia was a one-time occurrence that resulted because of the lengthy fasting period. Our oncologist ordered that Nico always get the first available time slot (9:30 a.m.) for lumbar punctures (LPs) to avoid hypoglycemia in the future.
This first-available time slot order became an issue of its own. As I have written numerous times, we have had a lot of problems on LP days. In the beginning, there was one particularly bad day that I do not believe I wrote about in detail. Again, because I am hesitant to write too much when we are still in treatment. But the long and the short of it is that I developed trust issues with the person performing the LP that day. After the LP on that particular day, Nico would not wake up. I could arouse him, but he would fall right back to sleep. He was completely gorked for about 8 hours, and I believed that he was overmedicated. But no one talked to me about the procedure, and there were a lot of other things going on. After LPs, a bandage is placed over the puncture site, and it is to stay in place for 24 hours. So 24 hours later, I removed the bandage to find two puncture marks in Nico’s back instead of one.
Presumably, Nico woke up, or jerked, or struggled during the first attempted to perform the LP, and thus the anesthesiologist gave him another dose of the medication that we were using then. This resulted in Nico receiving almost twice the dose that he normally received at our previous clinic and explained why he slept all day. Both Jeff and I understand that kids get wily during LPs and can end up getting two sticks. But what bothered me was that no one felt any obligation to inform me of what happened. Instead they handed off an overly-sedated child and let me discover two holes in his back the next day.
Like all the prior stories, I notified the oncologist. Our oncologist looked up the procedure record and that was how I found out about the second dose of anesthesia. Our oncologist juggled some dates for us, and permanently changed the day of the week that Nico was scheduled for LPs. This way, we avoided the practitioner that performed the LP without much ado.
Fast forward to last week (on my birthday no less) and I get a call from the practitioner in question. We still see her often; she just does not perform his LPs anymore. I believe that she was also the person charged with reviewing the labs prior to LPs (you know, the one that did not catch the hypoglycemia). She informed me that there was another child that needed Nico’s time slot, and she had unilaterally changed our LP day back to the original (on the day that she performs them). When there are scheduling changes, I automatically get an email from the clinic. The email showed the date change and also showed that scheduled time was again at the latest possible time slot. I started to argue with her. She insisted that I should not believe my eyes, and trust that she had scheduled his OR time for 9:30 (the first slot). This set me off because she and I have a history with her orders “not making” into the system and/or “randomly” disappearing. In fact, I believe that she is incompetent, but it has been difficult to prove.
Things got heated, and I suggested that Jeff would call to deal with her because I felt like I was banging my head against a wall. She welcomed this as she clearly viewed me as totally unreasonable. In fact, she told me that I was trying to deny another child life-saving medical care because of my unwillingness to accommodate other patients. You can imagine how that was received. So Jeff called, and made me seem calm and collected. Shortly after, Jeff also called our oncologist.
Our oncologist called me immediately. By the time the oncologist called, I had already called another pediatric oncology department at a neighboring hospital to schedule a consult. The oncologist and I spoke for what seemed the millionth time over what seems to be the same issue over and over. I imagine that it is incredibly frustrating to be at his level and spend what seems like a lot of time putting out fires created by what is supposed to be support staff.
The oncologist changed our LP day back to the day that we wanted, but we had to jump a week to do this. The oncologist also pulled this particular practitioner off of Nico’s care altogether. We were supposed to get an LP this last Monday, but it has been bumped to this Monday.
We are just tired. The irony of this situation and my background is not lost on me. I worked in nursing for many years, then law school because of an interest in healthcare policy and litigation, and then ultimately I moved to DC to follow my dream of working in patient safety. I was going to help change the world for the better! In some ways, my whole professional career has led me to advocate for my own child. The terrible part is that it is my own child, that advocacy is hard-fought, and that I am not only not getting paid, but instead we are paying a mint for this constant strife. At least we are not alone in this struggle. We seem to have a lot of support, even within the very system that we seem to be fighting.
To be continued . . .