Make-a-Wish Star Raising/Wish Granting Celebration! Photos courtesy of the amazing Schiavone Photography.
We tried weekly for a month to complete Nico’s scheduled lumbar puncture (LP). This is important because they are monitoring his cerebrospinal fluid for leukemia cells and injecting chemo into that fluid to obliterate any cells that could be hiding in there. Because Nico did not respond as expected to oral Versed during the last LP, we had to go to the OR this time. This means that every LP requires we go through a separate registration, which is not a short process. It means that Nico goes to pre-OP holding, which is sort of a scary place. It means that I wait in a waiting room filled with anxious, tearful parents with children having major surgery, which is one of the last places I want to be. It also means that we interface with a whole new group of physicians and nurses that thus far do not seem to listen very well. The whole process adds about two-three hours to the procedure.
We talked to some of our friends whose son was diagnosed just a few weeks before Nico, and their hospital performs LPs in the OR too. This is why changing care midstream is hard. You become accustomed to how your own clinic runs. Now we must adjust to all new protocols during a time when our ability to adjust is pretty low. We are living in a temp house, all of our things are in storage, we are trying to establish a new life (school, work) and make sure our child gets the best care possible. And his care is fairly complex. I guess that I am just saying change is hard. And this change requires we spend hours and hours a week in the hospital.
Nico is very sensitive to drugs, and frequently reacts the opposite of what is expected. In the past, he had terrible reactions to anesthesia. It is a lot like when he gets IV Benadryl. He screams with rage, clenches his jaw, pounds his fists, sobs, bites, hits, and flails his body. This lasts about an hour. It is very hard to pinpoint what is actually causing this. When he got Versed and Fentanyl it happened. When he got Propofol and Versed it happen. When he got Propofol alone it happened one time, but not another. We found the perfect cocktail for him after many trials and errors. He does wonderfully with Ketamine and Versed. He never loses consciousness completely and recovers in just a few minutes. Also, because this cocktail works so well for him, we were able to perform previous LPs in a little anteroom in our previous clinic with all the nurses that we already knew, in a kid-friendly room and in our street clothes. We would get a lab draw at 8 a.m., get an LP, then receive chemo, and still be home by lunch.
So Nico and I wander down to the OR, and immediately Nico starts to get clingy. Then we are taken back to pre-Op holding, which looks like pre-Op holding, and Nico starts to cry. Everyone is in surgical garb – hats, gowns and masks. There is nothing kid friendly about it unless you think a cold metal crib is comforting. Nico has not seen anything like this since he had actual surgery. The anesthesia fellow comes in and I explain our history with anesthesia, including the reaction to Propofol and Versed. She tells me that they don’t usually use Ketamine and that they have had great success with Propofol alone. I told her that I could not say what component caused the problem in the past, but that I knew what worked and it is Ketamine and Versed. I probably should have pushed harder on this, but I was very worried about insisting they use an anesthetic that they appeared to be uncomfortable using. You are increasing your risk of a medical error when you push a practitioner out of their comfort zone. So I become very anxious by this point. Then I am told I need to change into surgical garb to take Nico into the OR room, but I am not allowed to stay in the OR room. When I start to don the gown, Nico loses his mind. He is screaming and trying to pull the garb off. The actual anesthesiologist arrives to the room and I tried to reiterate what I have told the fellow. He tells me that he has already talked to the other doctor, and he clearly has no interest in hearing my opinion. He then tells a hysterical Nico that he is going to make his life easier and starts to inject medication into his port. While he is injecting the medication, he made a comment to the effect of giving Nico a glass of wine to help him relax. Keep in mind that I am alone and holding a frantic child during all of this. The anesthesiologist had already started to inject the medication when I asked what he was giving Nico. The answer was Versed. The fellow mentioned they were using Propofol only, and now this doctor has given Versed, thus a combination of Propofol and Versed – the exact combination that I asked them not to use. It became very chaotic then. Nico was now stoned on Versed, but still trying to rip off my clothes while leaning back so hard it was difficult to keep him from tumbling out of my arms. In between his mewing cries and grabbing at my clothes, he was giggling, but there was nothing funny about it.
I was then squired off to a waiting room of completely frantic parents where I stress-ate the entire time. As expected, Nico’s wake-up did not go well. As soon as his eyes were open and the crying started, the PACU nurse told me that I could take Nico back to clinic upstairs. In the time it took me to load him and his stuff into my arms, he was awake enough to start fighting. He was fighting so hard that they asked a tech to carry our things for us. I had to use both arms and all my strength to keep him from flailing himself onto the ground. He was screaming at the top of his lungs. So they whisked us off to clinic, and you can imagine our reception there. We had been there just a couple of hours earlier, and Nico was his active, talkative, playful self then. Now he is totally distressed and inconsolable. He was screaming so loud, they put us in a special isolation room rather than the infusion area because he was upsetting the other patients. The nurse tech (whom we love) bent over backwards trying to distract him, make things better or just help me. But it is like he is in a trance when he is like this. All that you can do is hold him and wait it out.
I would probably have been angrier, but the NP was incensed, and that made me feel better. I told her that we seemed to have a bad relationship with anesthesiologists, and that as a whole they did not want listen to what I say. She said that this would not happen again. I am not sure what she did, but I was told that we would never have that anesthesiologist again. I know that she called the anesthesia department, pharmacy and our oncology fellow. The fact that the anesthesiologist did not speak to me directly seemed to be a big no-no. The NP got an official diagnosis for what happens to Nico with anesthesia, “emergence delirium.” She charted this as an “allergy” to this particular med combination so that future anesthesiologists would not be able to pull out these drugs under Nico again. I begged her to find a way to get us back into clinic, and out of the OR, for LPs. I think my exact words were, “Please don’t make us go back there.” She discussed this with our oncology fellow and he has reservations about trying IV Versed in clinic based on how he reacted to oral Versed. I will bring this up with him when I see him in person.
This was a lot more traumatic than it needed to be for Nico. It was unnecessary too. I speak up for my child, but I have gotten into trouble in the past by pushing for something that the practitioner was not experienced with. So pushing to use a very powerful anesthesia when the practitioner is telling me that they are uncomfortable seemed like a bad idea. However, there should have been another alternative than using the exact drug combination that I asked they avoid. It is very hard to advocate effectively when your practitioner acts before discussing it with you.
I am glad that the clinic at least saw what emergence delirium looks on Nico like because I always feel like they think I am just saying he is fussy. They do not think I exaggerate anymore, I am sure of that.
I expect that we will iron out all of these issues. I expect this will go smoother in the future. I have to credit the NP (and the clinic staff in general) for trying very hard to improve the process. The NP and I had a very long conversation about this. The clinic had a sedation suite like the one we had in the past, but lost it when the hospital was remodeled. The department chair is working to get the space back. Likewise, the clinic has been trying to get accredited to give Ketamine in clinic for a long time. They are aware of these issues, and were aware of them before I spoke up. I think that speaks well of them. The process of actually accomplishing these goals seems endless though. In the interim, they are working with me within the parameters that we can currently control, like what drugs anesthesia uses.
Nico is probably going to have to adjust to the OR though. It sucks down there. But if they legally cannot give Ketamine in the clinic, there are not a lot of choices. We will just keep muddling through.
PS - As of 02/09/14, we have stayed out of clinic for eleven days now. This is progress!