I don’t know what to call Texas Children’s Hospital other than my home away from home. Yousuf is starting his 6th cycle now (each cycle is 3 months). They always begin with a spinal tap and, of course, the monthly dexamethosone steroid. He’s been improving every month, in regards to, his side effects of the drug. He’s a bit sensitive at times but overall he’s more himself than ever. Last week was his scheduled spinal in the PACU, and he had to fast as usual, nothing to eat or drink. Our appt was 7:20am but by the time he got there he still wanted something to quench his thirst. The routine of his complaining goes right along with his routine treatments. By the time we reached the 7th floor of PACU he started crying and laying in my lap over hunger pains. I told nurses that he needs to be up on the list since this extreme behavior was new. We still waited and waited. Yousuf began crying and telling me he was scared. By that time the nurse came to get him for his “operation”. I had to carry him he was so weak. Right on time when we entered the room he vomited on the operating table and collapsed on the floor gagging some more while dangling from my arms like a limp puppet. They began to tell me that the procedure is now cancelled and they can’t do any anesthesia in his condition. Bending with my arms wrapped around his chest and trying to pick up his limp body I cried, “What IS his condition!? What’s wrong with him?” Finally, with help, we got him on the table and one of the nurses kept his head from tilting over and eyes rolling in the back of his head. She kept trying to make eye contact and asked him if he knew where he was and if he could understand her. He nodded his head and we gave him sips of sprite right away. We got him wheel chaired back up to the cancer floor and back to see the doctor, but in seclusion just in case he was at the beginning of an illness. After some fluids and whatever crackers they had available he perked up and was back to normal. Dr. Margolin said due to him acting hypoglycemic we will have him on fluids for any future procedures.
Rescheduled on Monday, (today), we started with the same routine of port access and blood test. Last visit and this visit were his first and second port accesses he didn’t cry during. We celebrated that last time, this time not so much. His fluids were started and we headed downstairs to PACU for his procedure, strolling around an infusion tower this time. The PACU was packed as ever and little brother Omar was enjoying all the toys and play cars to ride in. He also enjoyed yanking Yousuf’s tube connected to his port. Yousuf wailed and screamed at Omar and sat still holding his side. He kept complaining of pain so I asked the nurse to check it out. I’m not sure what they THINK checking it out means but two nurses reassured me it was fine. I told myself I will also have the nurses in the operating room check it. Yousuf was very nervous that I had to drag him in the operating room and sit him on the table. I’m definitely used to his nervousness so I remained calm knowing this behavior was normal while a couple of the new nurses were trying to dazzle him with funny questions. I told him about what his brother had done to check his port. I told him two other nurses checked it but please check it again. I’m thinking since they can’t see anything swelling up and two other nurses okayed it then it must be okay. Wrong thinking. The nurse draped a warm blanket over him and began to entertain Yousuf with more funny questions about cartoon characters. I frowned thinking maybe I didn’t hear him tell them he was cold. Then I saw her sneak the fat syringe of white liquid under his blanket and attach it to the tube connected to his port. I felt very uncomfortable and upset at her technique on trying to trick him. As soon as she pushed it he began screaming. I immediately jumped up and said this isn’t normal. “Why is he screaming? Why is he screaming? Check his port!” By this time the entire syringe of medicine was administered and they said that he can still feel the medicine go in that’s why. I told them “NO, he’s done this a TON of times and he’s never like this.” They finally lifted his shirt and it was as if there was tiny football under his skin on his side. I began screaming at them, “I told you something was wrong! I know my son, I know my son and when something is wrong!” They just stood there dumbfounded and couldn’t say a word. I just cried and cried looking at him with his eyes shut but his arms swinging and legs kicking as the drug did not knock him out because most of it was there protruding from his belly in a liquid ball under his skin. They pulled out the needle and lightly pushed out some of that white liquid seeing, in fact, that most of it was the drug and not just the fluids they had been giving him. “Do you give us permission to put an I.V. so we can get him calmed down in order to deal with this?” They asked still defending themselves from his swinging fists. I said yes as I watched them all hold him down to put another needle in his hand. “Can you leave so we can continue the procedure?” My only response was me exited the room like a zombie.
It wasn’t 10 minutes before they called me back to the recovery room. I sat there numb for an hour and let us both recover. I was just staring off motionless and tired when Dr. Margolin appeared from the side of me watching my exhaustion in full understanding. We sat and discussed the situation and PACU isn’t working for us. In the future we will attempt to have the spinals done by Dr. Margolin herself with local anesthetics. It’s common for kids his age to get them in the clinic. I agreed. Anything done by Dr. Margolin over someone else is always preferred.
Yousuf remained handicapped the rest of the day requesting help to eat and use the restroom….which he used a lot from all the fluids he had. I was able to tap on his port to see if I could feel it or if it was still swollen. Yousuf just yelled at me and told me he could feel the port moving around inside him. I hope it’s better by morning. Lesson learned; no matter how educated and licensed any of these practitioners are I still know something WAY more than them: my son. Next time I will make my knowledge to them credible and make them LISTEN!