Nico and I went to clinic yesterday to attempt the lumbar puncture originally scheduled two weeks ago, and to get IVIG (the antibody I mentioned previously). IVIG is technically a blood product and Nico has had many severe allergic reactions to blood, so I was a little nervous. They decided to pre-medicate him with Benadryl and Tylenol to stave off a reaction. Nico and IV Benadryl just do not mix well. I warned everyone that the Benadryl had to be given very slowly, and they did give it fairly slow. Unfortunately, he still became agitated and a little scary. He bit, kicked and threw things. He urinated everywhere and then attempted to pull out his IV if anyone approached him to change his pants. Then after about 45 minutes of this, he just passed out. He was more unconscious than asleep. He was so totally unresponsive, the physician’s assistant (PA) thought that he might actually be able to perform the lumbar puncture without using Versed. The PA even managed to inject Lidocaine into the area, and this is usually uncomfortable, without anything but Benadryl onboard. But near the end of the Lidocaine injection, Nico squirmed and the PA (and I) thought it would be smart to go ahead and give Nico Versed just to be safe.
About 20 minutes after giving Versed, a drug used for sedation all the time, Nico rolled over, opened his eyes and sat right up. He was completely drugged out and his speech was garbled, but he was awake. Versed woke him up! The PA and I just looked at each other and shook our heads. It was crazy. The PA still attempted to get an LP, but Nico’s face indicated this was going to be too traumatic. The PA stopped and said, “I can get it, but he’s going to remember it” and then left it up to me whether to proceed. I did not see the point. The LP has been delayed for two weeks anyway, and I do not think my kid needs anymore trauma. We called the whole thing off and waited for the IVIG to finish.
This hospital performs a lot of blood work. They run a completely new set of labs every time we are there, and that is a few times a week right now. Hopefully he does not become anemic (I’m not kidding). So we found out yesterday that Nico’s neutrophils dropped again, before we even restarted his chemo from the last drop. This means Nico’s ability to fight bacterial infections is nada, and any fever will require immediate hospitalization. The last fever that landed us in ER was probably some random virus that crashed his counts. So more waiting and more chemo holds. In the last three months, Nico has not even gotten 50% of the prescribed chemo because his counts are so low. At this point, once we can safely restart his chemo, we are going to have to reduce his dose. They also want to test him for sensitivities to the chemo. The PA was saying that each person metabolizes these drugs very differently. Nico clearly does not metabolize pretty much anything like the norm. They are also going to look at changing the prophylactic antibiotic to something else since the one he takes now can lower counts.
We left for the hospital that day at 9:00 a.m. and got home around 7:00 p.m. It is hard to imagine how this is going to work for us. The doctor and PA assure me, over and over, that it will get easier and we are ironing out the wrinkles. I really hope so. The crazy part was that the reason that Nico’s doctor delayed the LP to begin with was because his neutrophils were too low. So we waited, his neutrophils got even lower. They are effectively 0 right now, and they were still going to do the LP (if the Versed had worked). So what was the point of all these delays and clinic visits then?
On a positive note, he did not have an allergic reaction to the IVIG and this should help him be able to fight off viruses a lot better. We will start monitoring his IgG levels monthly now and he will get infusions as he needs them. The PA said that he has seen a lot of kids really turn around after starting these infusions. So maybe this will be what we need. On another positive note, we have been in clinic so much that we have gotten close to the staff. Actually, I know more about their private lives than I ever thought I would. But they try very hard to make it easier for us. For example, the nurse tech got me a meal card so that I could get lunch. She also spent a long time picking out a cute outfit for Nico to change into since he urinated all over his clothes. The staff took turns sitting with my sleeping child so I could get something to eat. When not psychotic from Benadryl, Nico likes to roll around the hall on a little fire truck that he found in the playroom. He blares the siren the entire time, and the staff will line up to let Nico roll by why exclaiming that fireman Nico is coming to save the day. This is a really friendly group, not just the staff but the patients too. Still, I would like to see a lot less of them, at least less of them in that setting. Maybe soon.
P.S. The photo of Nico eating was right after the Versed should have kicked-in. Instead of making him sleepy, it gave him the munchies. The little video clip below this post (on warriornico.com) is about when the Benadryl started to take effect.