Something went terribly wrong today...Clayton woke up in a great mood. Playful. Happy. We waited on word from the neuroblastoma team about whether or not to proceed with his 3f8 treatment or not following his mysterious episode Saturday morning. After the report that his EEG showed no signs of seizure, we pressed forward with treatment. Everyone was happy Clayton would be able to have a treatment before starting his therapy for his back. He started his premeds for treatment at 1 p.m.; Tylenol, Pepcid, benedryl, vistral, zophran and one other. He quickly fell asleep after the Benadryl. About 2:45-3:00 we gave him his first dose of dilaudid in preparation for the pain we all knew was coming. The first 15 minutes of the thirty minute infusion, he slept. Then it began. He started thrusting his hips and thrashing around as the pain took over his little body. Almost as soon as the pain hit, his lips swelled up and the hives began. I knew something was wrong immediately because of the extent of the swelling in his lips followed by swelling in his ears...yes, his ears. His ears looked like they had "cauliflower" often seen in boxers and his lips looked like a horrible horrible plastic surgery job gone wrong. To be clear, kids are expected to have an allergic reaction to the antibody; that is why they premed them. However, this was far worse then the normal or otherwise acceptable reaction. The problem was that no one knew what to expect. How long would this reaction last? The doctors were trying to make steps to help Clayton, but they did not know the extent of this reaction. I think at first, we all thought both the allergic reaction and the pain would subside as the infusion wrapped up and we gave him his rescue doses of benadryl, vistral and dilaudid. The pain did not subside so easily, again confirming my belief that something was really wrong. The pain and the allergic reaction continued into the flush which is a time he should normally be resting. Each rescue dose of antihistamines seemed to help for literally a minute before he would again swell back up. The main worry was his airway. As he swelled on the outside, we were all quite sure he was swelling inside as well. This was confirmed by his labored breathing, rattling, snoring, etc. His eyes were swollen shut, his lips were at least five times their normal and he was barely holding an O2 stat of 94 on 100% oxygen. We were then able to get a good enough look at his tongue to see it was swollen to the roof of his mouth.
The two 3f8 nurses, the nurse practitioner, Dr. Kushner (our primary oncologist) myself and George all just sat there for a few minutes shocked and trying to figure out how to best proceed. It was hard to know what to do not knowing how persistent this might be. The nurse practioner had a plan of action, but Dr. Kushner wasn't jumping on her plan as eagerly as she wanted, so she called the Peds Attending from New York Presbyterian actoss the street that looks in on the kids in the POU. The attending got there and fell right in with the same plan the nurse practitioner had. At this point we were two hours into the ordeal. They immediately gave him steroids followed a little while later by an epi-pin. It would take a couple of hours for the steroids to kick in and at least five to ten minutes for the epi-pin. The only reason he did not get steroids sooner was because they essentially cancel out the 3f8 antibodies and if he had recovered from the reaction they had not wanted to waste the treatment. Everyone was floored that this happened. This dose was not only his 11th dose (third cycle), but it was only a quarter of the dose that he got with the first two cycles. The fact that he did so well with those and then had this reaction stumped everybody. His reaction to the first two cycles were no where near this.
Anyway, it was around this time George directed me to turn around and I saw Marianne. Marianne is a fellow from New York Presbyterian. She is the same one that walked us across the street after his tumor resection and successfully extubated him last year. She was the peace I needed. With her and the nurse practitioner Dee looking over Clayton I felt much safer. Much more at peace. Dee was like the mama bear to the rescue and Marianne was that peaceful voice saying, "it will be OK. We will make sure to take care of him."
Three hours from the time everything started, it was time to talk about intubating him. His blood gas was 75; too high. They gave him some more breathing treatments and rechecked his blood gas; it was 71, normal is around 40. Still too high. By now there were at least 15 people in the room. They were preparing to incubate.
To shorten the rest of the story, they successfully intubated him and we made our way to the PICU across the street. He will be over here through the night and hopefully they will extubated him tomorrow. For now, his body can rest and recover and the machine will do the work for him...
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