This kid rocks! Seriously. So proud. With Clayton's history, everyone was prepared for the worst with him, but he gave us his best. He was asleep when the infusion finally started at 5:10pm. The nurses checked his oxygen stat probe was working good and put the blood pressure cuffs on him. It was maybe 4 minutes in that he started squirming and within seconds that squirming turned to thrashing. Two 3f8 nurses, another nurse, the child-life specialist and George were all trying to rub hot packs all over his body to calm him as I lay in the bed with him trying to keep him calm and hold oxygen in front of his face. There was a rough 15-20 minute patch of time where we didn't know how bad it was going to get. He was thrashing sporadically trying to work through his pain and as he thrashed from side to side, I could see the terror in his eyes from the excruciating pain. It was a look of fear I have never seen from him before. Here and there, his body would go rigid and his hands would be formed like claws just shaking as the pain overtook his sweet little body. You could see him trying to work out the best thing to do and though he might never know it, he did just that; he breathed through the pain. His oxygen levels never dropped below 91- that is awesome! Around 5:25 he started falling asleep, which was fine as long as his blood pressure, oxygen and alertness remained in tact. For good measure, we would try and stimulate him from time to time just to be sure. He has been resting since about 35 minutes after starting the infusion. His heart rate remains elevated, we are continuing to blow oxygen near is face, and he grunts and moans while resting, but he did it! He made it through and got a "par for the course" from the team. In other words, he experienced the most typical reaction they see and that is wonderful- compared to the alternative.
I just traded places with George so that he could lay next to Clayton for a bit and I think I am going to grab some dinner across the street real quick. I'll come back in a bit with more info...
Ate dinner, Clayton was a little restless, so he got more drugs and now we are going to bed. This really took it out if all three of us!
More details tomorrow ...
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