Day 269

In my notes last night I wrote, “2:17am, bath 6, so tired.” That’s all. Last night was the third in a row of bath after bath and unsuccessful attempts to fall asleep. Finally Benji acquiesced to pain medicine after 3am. We both got almost four hours of sweet, uninterrupted sleep.

Benji’s 6am blood labs, which were drawn by a ninja nurse without us knowing, revealed a steady upward climb in creatinine. Dr. Cassini, the pediatric nephrologist, came to consult with me a little while later. He said that while the number is trending higher, in comparison to the normal range, the increase is almost a plateau. He did not recommend dialysis for today, but would look at the results of tonight’s labs and make a plan for tomorrow. A one day at a time approach.

Benji’s morning was full of pain, vomiting and discomfort. He took many more baths. His fever stayed high. Dr. Grana requested a stool culture to rule out the presence of Clostridium difficile, or C diff, a most unpleasant bacteria sometimes found in the gut of immunosuppressed patients, especially those who have taken antibiotics recently. This took me off guard, as Benji hadn’t had a bowel movement since Friday and C diff usually presents with frequent, watery diarrhea. But it certainly would explain a lot. Benji cooperated and the sample was sent.

Michael arrived then with reinforcements: two wagonloads of food and assorted things from home. Some things I’d requested and some I hadn’t. He knew just what we needed, and it feels much better in this room now. Soon after he got here, Benji agreed to pain medicine. He’d been hurting all morning and his blood pressure and fever were back up. After it was absorbed into his body, he took a nice long nap, and Michael and I joined him.

I woke up a little later to the sound of quick, raspy breaths coming from my boy. I paged the nurse to request an oxygen check. Kathy and Gana arrived then too, and stayed to sit with us for a while. We put an oxygen monitor on Benjamin. When he’d dip below 90% saturation, Michael would adjust his body and ask him to cough, encouraging deeper breaths. It worked, but it still didn’t bring his oxygen up where it needed to be. The nurses brought in a little help. Benji hates those tubes in his nose.

Dr. Grana came in to see us. She seemed tired. We learned that the stool culture results were negative for C diff, and we asked about the possibility of other bacteria, both in the blood and the stool. She seemed more inclined to think we had a virus on our hands, but his blood and stool are being sent for further testing. Because of Benji’s slightly labored breathing during sleep, even though his lungs sound clear, Dr. Grana ordered a chest x-ray. When fluid builds up in the body because of low kidney function, it can build up in the lungs as well. Dr. Grana suggested a dose of the kidney clearing medicine Lasix. We were hesitant, as this is a nephrotoxic medicine. We asked to wait and see if the x-ray showed fluid and if his urine output didn’t catch up to his IV fluid input. Then we’d have the medicine to use if we needed it.

Benji slept the entire time Kathy and Gana were here. They left to pick Banyan up from his sleepover just before the nurses came in and woke Benji up for his x-ray. Michael walked down the hall and caught them as they were leaving; I was grateful they were able to give Benji a quick hug.

Benji was nervous to walk back down to the Imaging Center. He didn’t want another experience like yesterday’s MRI. We assured him it would be quick, and it was. Two pictures and he was back in the wheelchair on the way up to the 7th floor.

When we opened the doors back into the oncology unit, we saw a small boy in the hall wearing cowboy boots and making the nurses laugh. He had a mask on, so we could only see his eyes and his sweet little bald head. From our distance at the double doors, he looked just like Hudson. Michael thought so too. I waited for Benji to tell me he’d thought the kid was Hudson. He didn’t. I felt relieved. I felt many things.

Michael and I were happy to mark Benji’s next few urine outputs on the nurse’s dry erase board. They were more substantial than any he’d output all day. This news, in combination with clear results from the x-ray, prompted Dr. Grana to drop the Lasix suggestion. We can revisit it if Benji becomes more swollen or can’t produce enough urine.

Benji’s pain was pretty well managed this afternoon. He didn’t vomit, took lots of baths, and was a very sleepy guy. Michael stayed until Benji’s nighttime labs were drawn. I was able to take a long, hot shower. The water temperature is perfect in this bathroom. I gave thanks that we have a room with a bathtub for Benji and an endless supply of hot water.

Benji’s labs showed that his creatinine number dropped by a hair. We can only take this as a good sign. His fever, however, continued to rise. When it hit 103, we decided to give him Tylenol, just once, to give his body a break and help with pain in the hours to come.

After more baths and some back pain, Benji’s fever is slowly coming down, and he’s peaceful. We are going to be here a few days, but Michael and I feel better about the mystery in our boy’s body than we did this morning. Some major potential dangers have been ruled out, and Benji’s immune system is strong and powerfully fighting the imbalance in his body. Sometimes answers don’t come right away, as urgent as things may seem. As always, tonight, we have much to be grateful for.

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