Elijah had his PET/CT scans last Tuesday. Ug. What an ordeal. First, the results: NOTHING lit up in the PET scan. Yay! The doctor wants to repeat a chest CT in 3-4 weeks to check on some nodules that could be just scar tissue.

Now, to chronicle the day. I was told to cut off nursing promptly at 05:30 to ensure the milk sugar had time to metabolize for six hours. That, I begrudgingly did. Then, he woke up a few minutes later demanding more. I cheated by a few minutes, hoping he’d quickly fall asleep. He really didn’t drink, but he didn’t fall asleep either. My instinct tells me every time to ignore the cut off and let him finish nursing, i.e. sleeping, for another hour or two since his scans are never on time. But, there might be that one time it happens. So up we were. We rocked. We walked. We bounced. A boy knows what he wants. He tantrumed with all his might. I briefly calmed him with some warm water in a bottle. He doesn’t drink out of bottles, but he was happy to chew for a moment. I tried some TV. I walked some more, praying and praying he’d fall asleep. Finally, he did sleep, but it was only long enough for me to get dressed, sneak some food and wake him up to go.

Check-in was a breeze, and there was one patient almost finished, just ahead of me, so I thought it might be a quick day. We experienced a mixture of waiting, talking and signing papers.  Finally, the tech brought a styrofoam cup with some contrast diluted in about 5 oz of water and asked me to have him drink it. You would think that getting a starving toddler to drink a cup of water would be a breeze. But, my eyes bulged for a moment, realizing he’d never swallowed that much of anything before, short of maybe from nursing. Plus, he will only chew on or blow through straws. I tried to dribble some from a straw into his mouth. He got bored of that, and I realized it would take all day. Plus, he was very agitated that I wouldn’t nurse him. When he wants to nurse, he is very single-minded. I tried cup-feeding, but that was just a slow and twice as messy. I told the tech he wasn’t drinking more. So, she said to give him a break and try more later.  I saw that it was already nearing 13:30, so I asked for a syringe to try to squirt it in his mouth. They gave me a 3/4 oz syringe, and he was cooperative with about half an ounce of that, and I spent the next 2 oz waterboarding him. I got about 2/3 of the water in or on him, before I couldn’t stand to stress him any more. They had checked in once or twice, and even tried helping me. He flirted for them with a big grin as he let the water roll down his chin. The tech finally said we’d go with what he had. The nurse accessed his port and gave him another contrast, after which we had to wait an hour for it to disperse. Why that couldn’t have been done before, I don’t know.

We had also had a discussion about emptying his bladder. When the appointment was set up, I requested that he not be retracted when they put in the catheter, and got some argument about that. I let them know that, whether a doctor agrees with me or not, I will not permit it to be done. In the prep room, the nurse acknowledge that the tech knows I’m uncomfortable with something surrounding the catheterization. I explained to her that, being as young as he is, his foreskin cannot be forcefully retracted. She countered, questioning that I don’t retract and clean him for hygienic purposes. I handed her my 7 sources, including an AAP policy statement, that all agreed to “never forcibly retract,” and which explained the difference of anatomy of infants to adults. She said she’d read them, and conceded that they could either try to cath him by “feel” or could see if he pees before the procedure. Ultimately, they were satisfied with his heavy diaper.

It was after 15:00 before he was in the machine. I’m not sure if it tortured him or me worse that I couldn’t nurse him for 9 hours. Finally, around 16:00, I had Elijah in my arms and fed, and they asked me if I still wanted to go up to the clinic for the results or if I wanted to wait for a call. I said heck, yeah, I want the payout! We went through all this; I at least want to leave with an answer. So, I caught Dr. B in the clinic lobby and he gave me the unofficial opinion of the results.

The fun part is the clinic nurses passed him around and he was all smiles. They gave him his Beads of Courage. Each bead represents a hospital treatment like a poke or a scan. It was really startling to see his journey as a bag-full of “events”. There were so many! Two of the beads represent 100 of something. Others, I know were short, such as his hospital stay beads, his “pokes” beads, and dressing change beads, etc. But still, it’s a remarkable picture to behold.