For the next installment . . .
Last week, Nico had another lumbar puncture. Things went pretty much as expected in the beginning. Because Nico cannot eat at least 8 hours before getting anesthesia, we got up in the middle of the night periodically to drink juice. This was supposed to maintain Nico’s blood sugar long enough for us to get clinic at 8:00 a.m. where Nico gets an IV dextrose solution. This worked out fine; we were just tired. After a little dextrose bolus, we went to the OR. Nico freaked out less this time, but he did look around the OR and state flatly and loudly, “This room sucks.” Add his vocabulary to my list of parenting failures. When the doctor administered the anesthesia, Nico started to scream. This was new, but he was hypoglycemic the last two times he got this particular drug, so maybe this is how he was supposed to react? The anesthesiologist said it was normal.
Then I went to my usual spot to wait, and I noticed that I waited a lot longer than the last few times. I started to get nervous. Finally, the waiting room attendant fetched me and led me back to the recovery room. I felt incredible anxiety as I walked back. I found Nico sleeping. Sometimes Nico is still asleep when I get to the recovery room, but he never sleeps long. His recovery room nurse got the memo regarding his blood sugar issues and wanted to wake him up immediately so that he could drink some apple juice. Nico would not wake up. After vigorously trying to get a response from him, the nurse decided to check his blood sugar. His blood sugar was fine, but she decided to hang another bag of dextrose for good measure. Now, I am not a pediatric nurse. I am not an oncology nurse, and I have never worked in the recovery room. And times like these are when my background as a nurse is a really, really bad thing. Because I notice little things, like the recovery room nurse casually doing a sternal rub (rubbing the skin on the sternum – it really hurts if you do it right) and Nico not even flinching. I know these techniques. I, too, have pretended to be as cool as a cucumber while I nonchalantly (with the goal of going unnoticed) dug into a patient’s fingernail bed, desperate for some indication my patient was going to wake up eventually. After about 45 minutes, I told the nurse that Nico had never slept this long after anesthesia. We both started bothering him then – I was talking to him, telling him that I had a transformer for him to build. The nurse was openly trying to irritate him (doing things that I know are painful) and telling Nico that he was clearly going to be her stinker for the day. After an hour, the nurse quit pretending she was not worried, and both of us got increasingly anxious. I checked Nico’s pupils and they were pinpoint. His tongue was sticking out of his mouth. He did not look like I have ever seen him. I know that all of this can be normal when recovering from anesthesia, but it does not feel normal when it is your child. Trust me on this.
The anesthesia used is a drug called Propofol. I know this drug, and I know it has a very short half-life, mere minutes. So after an hour and a half of trying to wake him up, both his nurse and I were feeding off each other’s anxiety. Then Nico’s heart rate alarm started dinging. I watched the monitor, and again, I do not know jack about pediatrics, but I knew that his heart rate is too low for an adult and heart rates are supposed to be higher in kids. So I asked his nurse about it, and she replaced his cardiac leads. She had taken them off earlier because the expectation was that Nico and I would already be back in clinic by this time. The nurse watched Nico’s heart rate on the monitor and it continued to trend down for a few minutes. It just seems to be part of the routine now – that at some point I will start to question whether my child will wake up from a procedure that is supposed to be simple. She had already called the anesthesiologist, and maybe a charge nurse. I remember other people being there, but I do not think I even looked up. I remember hearing vague medical information passing between them. I periodically answered what seemed like idiotic questions in one-word answers. Example - Faceless stranger in the room: Well, is this his usual nap time? Me: No (while containing my indignation – does it look like he is taking a damn nap!). As Nico’s blood pressure started to creep down, the anesthesiologist (who returned and then stayed in the room with us) ordered the nurse to give Nico a drug called Atropine. Atropine is used to speed up the heart rate. This is a drug I only ever gave in the ICU and on pretty sick patients. Again, I never worked in the recovery room or on kids, but it was never not-a-big-deal when I was giving it. Nico’s heart rate responded very well within a minute or two. Then we covered Nico in warm blankets to heat him up. The sternal rubs and pleading continued and eventually, he just popped up and demanded that I hold him. This whole process took place over hours instead of the usual minutes.
The anesthesiologist assured me that this “just happens” sometimes and was emphatic that Nico did not get more anesthesia than usual, and our oncologist later confirmed this. Nico’s recovery room nurse and I hugged when it was time for Nico and me to return to clinic. It felt like we had been through something traumatic together. When we got back to clinic the practitioner that we saw told me that none of this was a big deal and that kids get low heart rates after anesthesia all the time. I do not know if he was trying to downplay the situation or if I thought it was worse than it was. It is all muddy now because: 1) I have trust issues with the hospital; 2) I know just enough to make this extra scary; and 3) the entire department knows that I have created enough of a stink to have their coworker removed from our care. Whether that was the right decision or not, we are on the radar as difficult parents (at least that is how I feel, but maybe I am paranoid about it).
Again, my previous experience as a nurse, assisting in many, many LPs, and our previous experience at a different hospital makes this situation really difficult. LPs are uncomfortable, and like any procedure have risks and potential complications. But all of our problems (a few of them more serious, like the hypoglycemia) have been related to the process and not the actual LP. I did have a question about whether the chemo he is getting during the LP could have caused some of his symptoms, but the consensus is that the “delayed emergence” this time was probably caused by Propofol.
Nico was really sickly acting all day. He could not stand on his own for most of the day. He could not walk without falling. When I asked him how he was feeling, Nico (who is allergic to peanuts) told me, “That hospital made me sick. I think they have germs and peanuts there.” Nico also told me that he felt like he had a needle in his back. He has never complained about the LP site before, but this was his 14th LP (if my math is right). He had a low-grade fever all night as well, and we went into fever-watch mode since anything over 101 means we have to go to the ER.
Nico will be four-years old in September and he is starting to verbally process more and more of his treatment experience. I used to think that he did not know any better because so much of his life has included chemotherapy. But for the last week, he has asked me to read the children’s book, “Chemo to the Rescue” over and over. The book, written by a little girl that had leukemia and her mother, explains leukemia and its treatment in a way that a child can understand. Nico asks a lot of questions while we read this book. The book explains the functions of different blood cells, and then introduces the leukemia cells and their interference with the normal “hard-working” blood cells. The book then discusses how chemo is needed to destroy these “lazy blob” leukemia cells. At first Nico was adamant that the leukemia cells were not bad. He insisted that they did work and did not need to be destroyed. This was difficult for me to hear. I do not want him to even say these words. But I try very, very hard to understand why he says the things that he does rather than tell him to stop speaking. I realized through the conversation that proceeded that he had reasoned that if the leukemia cells could be left in his body, he would not have to take chemo. So then we talked about how he felt when there were leukemia cells in his blood. I told him it was a long time ago and maybe he did not remember being in the hospital for several days and feeling very sick. He thought a minute and asked, “Was that with Dr. Barnette?” Dr. Barnette was his first oncologist. I told him that was when, and he was quiet and asked me to continue reading. Then we got to a page that discusses the different ways that chemo is administered. You might remember that Nico got 19 injections in his legs during a particularly bad phase of frontline chemo. He pointed to the syringe in the book and said, “I did not like those. But we do not do that anymore.” He remembers more than I thought he would. Then we got to the section of the book that discusses anesthesia, and I got a lot of answers about his reaction to the OR. When the child in the book was getting anesthesia, Nico turned to me and said, “You had eyes here and here” while pointing to my forehead. “You also had eyes here,” pointing to my eyes. “You were speaking, but I could not hear you. I could not speak.” I asked more questions to see if he was talking about my very loud attempts to wake him up in the recovery room. But he explained clearly that this happened in the OR, “the stinky room.” The anesthesia, Propofol is referred to as “Milk of Amnesia,” and usually patients do not remember a thing while on it. But Nico remembers something, and it is very unpleasant.
I told Nico that it sounded scary and he told me it was. He said, “you were talking but I could not hear you” several times. I started to suggest that maybe we could try getting the liquid out of his back a different way next time and he stopped me and said, “It is time for bed. No talking now.” I dropped it – “getting liquid out of your back” sounds horrible even to me and I am not three years old. I have to let him talk about these things, but I do not want to push him. Honestly, after these clinic days, I feel like both Nico and I need a day to decompress. They are so damn stressful. I have begun to anticipate that I will spend at least one day a month worried that my child will not wake up from an LP. And it is just an LP! My mind keeps returning to the first time we tried to perform the LP in the clinic of our current hospital. They are only allowed to use oral Versed here. Nico was right on the cusp of sleep, but was clearly going to feel and remember the LP as he has started to squirm and moan when the practitioner was positioning the needle. The practitioner left it up to me – get the LP now, and know it will hurt him, or wait and go to the OR? I thought it was a no-brainer – of course I did not want my child to experience pain needlessly. But now I wonder about the choice I made. What is worse – an uncomfortable needle stick or two bouts of dangerously low blood sugar, followed by a heart rate low enough to require intervention and a day of being too sick to even stand? There has got to be another option. I discussed it with our oncologist today, and he said that he is willing to try it in the clinic again, but we would need to figure out what we can use for sedation. This might be the glitch.
The good news is that Nico is officially finished with the first year of the maintenance phase LPs. This means that his LPs become quarterly and this is exactly half as many! Yippee!