I should disclose my hesitance to criticize the facility where my son currently receives treatment. In spite of these reservations, I think that the people that follow our journey, and the people that find this site because they are looking for guidance on their own journey, could benefit from our bad experiences. So I am just going to be careful about how I write this. I also want to be clear that our actual oncologist is not the problem. The problem is that much of our care is not dependent on him
As most of my complaints start, this happened in the OR. Nico continues to go to the OR for lumbar punctures (LPs or spinal taps). I find the extra steps in this process to be unnecessary. More importantly, because Nico’s care transfers back and forth between departments, it increases the likelihood of medical error. The potential issue, as I see it, is that everyone assumes someone else is paying attention to the details when in fact no one is paying attention to the details.
So we started out our day in the clinic at 8:00 a.m. with a blood draw. After some waiting time, and presumably after his lab results have been reviewed, we are shuttled off to the pre-op holding. This is an ordeal, but I have mentioned this in previous posts, so I will skip this part. The take-away, is that I inevitably end up having a polite, but urgent conversation with an anesthesiologist about Nico’s sensitivity to certain drugs. It usually ends up being fairly stressful. Jeff took the morning off work precisely because I have had consistently bad experiences with this process. The whole dialogue about anesthesia would be a post unto itself, but it did not end up being the problem this time, so I am going to leave that for a different entry.
Sometime between the blood draw and the pre-op holding, Nico started to act strangely. He gets very stressed during this (the surgical garb and cold, sterile rooms are nerve-wracking). So his whining and crying were not unexpected. But he wanted to be carried, did not want to play (not even with an iPad), and he asked me to rock him. This is not how my child acts. Because his LPs are in the OR, Nico cannot have anything to eat or drink after midnight (which ends up being 7:00 p.m. because of his bedtime). His LP was not scheduled until 11:00 a.m., so I became concerned he had low blood sugar. The medication that Nico takes daily makes blood sugar regulation a little more difficult. The steroids that he takes monthly also essentially render him diabetic for those days and can affect some children throughout the month. So I mentioned that he was acting funny, and that I was concerned that he could have low blood sugar (low glucose or hypoglycemia).
Bottom line, I told five different people prior to the LP that I was concerned that Nico was hypoglycemic. I even asked the anesthesiologist if he could hang some IV fluid with dextrose in it for good measure. During this time, Nico became increasingly lethargic. Finally, the anesthesiologist reassured me that they would check his blood sugar (a simple finger stick that takes about 30 seconds) once Nico was in the actual OR and under anesthesia. By the time they took him back to the OR, Nico was asleep in a way that could be described as unresponsive. He fell asleep in a loud, crowded pre-op at 10:30 in the morning. This is unheard of for my child. There are more details, but this is already too long.
I am of course assuming that his 8:00 a.m. labs were normal since it would be malpractice to perform an LP, let alone use anesthesia, without looking at labs drawn two hours earlier. I should also mention that in the past when I inquired as to his lab results prior to the LP, I was told that it is only discussed at the end of the visit. The message to me was that they are on a tight schedule and my questions are viewed as interruptions (this is something I complained about to our oncologist previously).
When Nico came out of the OR, I asked the recovery nurse the results of the finger stick. She informed me that the finger stick was not done. I do not believe they ever intended to check him. Usually I let him sleep after the procedure, but I told her that I was too nervous and needed to wake him up (to make sure that he did). I woke him up, and I popped a baby bottle with chocolate milk into his mouth. He drank it, and seemed totally fine afterward. I brushed the whole thing off as unnecessary worry.
We proceed back to clinic, where we are told his labs looked great. We get more chemo, the nurse gives us a printout of his labs and we leave. As we are walking to the car, Jeff says, “Wait a minute. This printout says his glucose was low at 8:00 a.m.” Normal range is 60-80, and at 8:00 am, two hours before Nico displayed symptoms of hypoglycemia, he was 50. So what this told us is that no one bothered to look at his labs. No one looked even after I told three different doctors and two nurses that I thought my son was acting strangely and might be hypoglycemic.
I was fairly upset and I immediately sent an email to our primary oncologist (who we did not see us that day) complaining about this and a few other things that I won’t mention now. He responded that we should investigate the communication breakdown and possibly retest Nico’s blood sugar again within the week. Our current hospital automatically sends laboratory reports to my email 3-4 days after the labs are performed. This includes the analysis done of the cerebrospinal fluid (CSF) obtained during the LP. So a few days later, I received an email labeled. “CSF glucose” and I decided that I should look at that one since it was obtained during the period of time that he was symptomatic.
Nico’s CSF glucose was 35 with a normal range between 50-75. Now I am a little rusty on lab interpretation, but I immediately thought that this was really bad, maybe dangerously low. FYI, an extremely low glucose level on a developing brain is serious. It can lead to seizures and brain damage. I did a quick Google search, and I did not get enough information, so I sent an email to a family friend that is a neurologist. His response was as follows: “It is likely that his young brain will shrug this off. It still should not have happened. And I am pissed too.” This was obviously not reassuring. I was livid (still am). I was so angry and frustrated that I just cried for a while.
I again write an email to our oncologist. I asked point blank, “Did this damage my child?” He responded within minutes. He stated that there was an acute risk and that we were fortunate it did not turn into anything more serious. After several email conversations, and an extra appointment with the clinic NP, I met with him this week to discuss what happened. He said that the oncology staff is not allowed to act independently in Nico’s care anymore, but must notify him (or our fellow) before proceeding with procedures. I really do not know if this will work. This assumes that the staff will actually contact him.
You might wonder if we have considered changing care. The answer is absolutely. Our concern, and belief, is that the healthcare system is flawed and these mistakes occur everywhere. Honestly, at our last hospital we were never given access to his CSF reports, and we had issues there as well. I think that I catch these mistakes because I am hyper vigilant and I have a background that the vast majority of parents do not have.
We do not know what the answer is. We are very happy with our doctor, but we do not see him consistently right now. As Jeff once said, “It does not matter how good your general is, if your foot soldiers do not know how to fight.” Is a good doctor enough? No, it is not enough. Is a not-quite-as-good doctor but a better hospital system enough? We do not know, and we are really dubious that the neighboring hospital systems are any better.
For now, we are watching Nico’s glucose levels. We have to go back more frequently anyway because again his counts are too high and we had to increase his chemo again. So we are trying to find a pattern to his blood sugar levels, and the right chemo dose. His current dose is higher than normal, and this is an extra burden on his liver. Frankly, the high numbers make me extremely nervous. So there is a lot that we are anxious about right now.
I have no moral to the story, no words of wisdom, no answers, and I am not going to be able to leave this one on a happy note. This process sucks. We have to let people, some of whom we do not trust at all, provide both life-saving and life-threatening treatment to our child. There is no way to sugarcoat that.