We are settled into our new room on the fifth floor, the Pediatric Intensive Care Unit. It was scary to come here. But this is where we needed to be tonight, and after one of the longest days in recorded history, I feel like I can finally take a breath.
Benjamin and I got very little sleep last night. His fever, pain and oxygen levels kept rising and falling, and I was hypervigilant. I was also experiencing that strange pain down deep in my belly, in my womb. I kept staring at him. It was nearly morning when I finally drifted off. When Benji said he had to use the bathroom less than an hour later, I jumped up so fast I almost passed out. It was such a dumb thing to do. I’m a fainter by nature; I know better. I had to sit on the bathroom floor next to him and restore my own oxygen. He was actually rubbing my arm, making sure I was okay. Ridiculous. It was a valuable lesson–I cannot let things like that happen. I have to take care of the basics, eating, sleeping, not passing out. I have a job to do.
Benjamin’s bathroom episode showed me how serious his lung deficiency really is. He was away from his oxygen mask while he was in the bathroom, and by the time I got him back to bed, his color was way, way off, and he was cold. I wrapped him in extra blankets and put the mask back on him immediately.
The sunrise at shift change was vivid red, beautiful. I listened as the nurses gave report and watched the screens as they toggled through the numbers. Benjamin’s port cultures all remain negative, so his fevers aren’t being caused by detectable bacterial infection. More likely his fevers are simply a result of his leukemia. His white blood cell count rose last night, up over 9,000, showing us that his chemotherapy isn’t working–at least not yet. I felt nauseous. I went back to bed, and slept as well as I could for about three hours.
Benjamin’s lower oxygen saturations continued throughout the day. Yesterday, when he sat upright in the chair next to the bed, he didn’t need the mask. Today, he did. Yesterday, when he took his mask off, he would desaturate to 88% or so. Today, He dropped into the 70’s, and quickly. The mask was on around the clock, and the nurses kept increasing the amount of oxygen that he was getting–to three liters, then four, then five.
During morning rounds we discussed the oxygen situation, and that’s where the conversation about a transfer to the PICU began. 7 South is only equipped to support patients with oxygen to a certain degree. They decided to monitor Benjamin throughout the day and make the call based on his progress. They also told me that despite the addition of TPN, Benjamin’s albumen was still low, so they gave him a four hour transfusion of the stuff today. It definitely seemed to make him feel less thirsty. I’m hopeful his veins have what they need now to retain fluid.
I asked the team about next steps for Benjamin’s treatment. We needed a consensus on the best way to try and relieve his organs and ease the pressure on his lungs. We also needed to know what their thoughts were on tomorrow’s scheduled lumbar puncture. Dr. Wishnew told me they were meeting in the afternoon to discuss Benjamin’s care at length. Dr. Oshrine would be there as well. We would wait for their recommendations.
I got a laugh out of Benji this morning and it sounded like sunshine.
Banyan stayed home from school today. He slept away the last of his cold, then Michael brought him here to see his brother. I was so happy to see him. It was clear Benjamin was comforted by his presence. Benji’s fevers came and went throughout the day. His highest temperature was 104. He was so hot. Tylenol was effective. His pain increased throughout the day as well, causing fitful, arched sleep. The pain team increased the dose of Dilaudid he gets when he pushes his pain button, and also reduced the frequency with which he can get it. Also effective.
The anesthesiology team, our physicians, and our own instincts were all telling us the same thing: tomorrow’s lumbar puncture is not in Benjamin’s best interest. As much as we want to protect his central nervous system, we know how difficult it would be for him to recover from anesthesia with such diminished lung capacity. We will have to postpone the procedure for another day.
Our instincts also aligned with the recommendation of the oncology team to begin a round of steroids for Benjamin today. We understand that this prolongs any eligibility in the NIH trial, but right now, that isn’t our first priority. His lungs and his organs are. It was the second major decision that felt very right to us today. As difficult as this path is to walk, it is always easier when we know the right choices are being made.
Dr. Wishnew ordered one more chest x-ray to be sure we weren’t missing any fluid in Benjamin’s lungs. Benjamin was sitting up tall in the chair by the bed when the technician arrived. He was trying hard to take big, deep breaths. He tries so hard to do everything he’s supposed to do to be well. The x-ray showed no change from his last imaging, which was a relief.
Benjamin was sleeping when Kathy and Gana arrived this afternoon. We sat with them around Benjamin’s bed, whispering and watching him rest. He had just gotten his first dose of steroids, and they had yet to take effect. He was on quite a bit of oxygen then and his color was way off. Dr. Wishnew came back in to tell us that they decided to transfer Benji to the PICU. It was another decision my instincts corroborated. Benjamin was stable, and we had plenty of willing hands to help us load up our things and move downstairs. If an emergency had precipitated a move in the middle of the night, things would have been a lot more difficult.
Leaving 7 South was extremely painful. It cemented the reality of this situation and stripped me of the comfort of these women who have cared for us continuously since September. I did not want to leave them. Benjamin shared my sentiments. With every goodbye in the halls, I tried to put on a brave face. I hope we come back. This can’t be our last time here.
Our wonderful 7 South nurse walked us down to the 5th floor and gave our new nurse a full report. Benjamin was instantly suspicious of these strange surroundings. People were coming in at high speeds and in high volume. He is being constantly monitored now and has nodes stuck to his chest and belly. There is a big bright light over his bed, just in case. Our new nurse was mildly condescending and a little too perky for Benjamin right away, and he started to cry, just a little. He has handled so much without flinching. But this did not feel right to him. This was not 7 South.
Among all of the hustle and bustle of the transfer, Michael and I noticed that Benjamin was feeling better. He is still on constant oxygen, but he was maintaining his levels more easily, with fewer desaturations. His color had returned. He was alert and his pain was under control. He asked to watch television in the new room, and before we knew it, he’d been comfortably awake for nearly three hours.
The PICU team drew a set of labs when we arrived. They showed such a deviation from this morning’s numbers that they drew the labs again to recheck. The numbers were not a fluke. They explained why Benjamin was feeling better–his white cell count plummeted from over 9,000 to just 740. I don’t know if the dose of steroids alone was responsible or if the chemotherapy was showing some efficacy as well, and I don’t know how long it will last. But for tonight, it felt like a huge victory, and an enormous relief.
Michael and Banyan left for the evening, and Benjamin and I started finding our groove. There are no night ninja nurses here. The lights are turned on frequently and it’s noisy. The biggest change for me is that I really have to advocate for him in this new setting. These folks don’t know him yet, and they are accustomed to dealing with much less responsive kids, let alone opinionated ones. I have already said no thank you to a peripheral IV–their suggestion to fitting in all of his regularly scheduled medications with the blood products he’ll need tonight. Not necessary! Just premedicate for the Vancomycin while you give his antiemetics, run the Vanc, hang the platelets, give him a bolus of Dilaudid then run the blood over three hours. You’ll be just in time for round two of steroids and morning labs, all before shift change. Boom.
We were absolutely overwhelmed with love and prayers today. We are being lifted and carried by them. I appreciate every single ounce of energy for Benjamin and for us as well. I also recognize completely that so many others are hurting because Benjamin is in pain. He is not only a son, but a brother, a grandson, a great grandson, a cousin, a nephew, a friend, a neighbor, a classmate. I am grateful for everyone who loves him, and who sees what we see in our incredible little boy.