I wake up early and read my notes from yesterday's events, reflect, and organize my thoughts over coffee before rounds in the PICU. My questions include: What are the "vascular challenges" associated with diuretics? What is the risk associated with urea levels? How has he tolerated the diuretics so far relative to expectations? How did he tolerate the fluids being off so far? The goal is always to minimize interventions… to let his body do as much as it can itself to heal, but we weren’t out of the woods yet and had to balance the opportunity to improve quality of life with the associated medical risks.
The Fellow stopped by before rounds and I learned that his labs look ok this morning. At 12pm they would run them again. We discussed the pros / cons of CRRT v. HD (two different types of dialysis ). CRRT runs over 8 hours, and has a lower impact on blood pressure but the machine more easily clots. Hemodialysis runs for 1-3 hours so allows the patient more mobility, but impacts blood pressure, and not every patient tolerates it. Since Ronan’s CRRT machine clogged 2x last night, we might have to move him to HD if bloodwork isn’t strong enough after last night’s CRRT. But it would be higher risk for a kid his age / size....
I ordered Ronan breakfast: 2 rice krispy treats, 2 milks (the Crystal brand is his absolute favorite now!), a mixed berry cup, a pineapple cup, a fruit plate, and a blueberry muffin. It was all about the options and snacks for later for this boy. I never knew what he would eat and I always needed to have food on hand for when he was in the mood to eat (which sometimes, I learned, happened late at night after the kitchen was closed).
Ronan started to struggle to take the HUGE phosphate binder pills that would help clear his blood. “I can’t do it!” he says staring at the 2nd big pill after downing the first. Then a look of determination crosses his face: “Wait, I’m gonna do it!” And with a force of will I could never imagine coming from a 10-year-old boy, he pops the monstrous pill in his mouth and downs it.
He tells me that it was “hard to breathe when lying down”... it breaks my heart to see him still so uncomfortable, despite all the tubes in him. But I don't have time to wallow in pity because I see through the glass PICU doors the caravan of doctors arriving. Time for morning rounds.
In rounds, I planned to ask: 1) Did we have confirmation of Burkitt Lymphoma yet? 2) WIll he receive blood thinners due to the CRRT machine clotting? 3) W.r.t. managing his blood pressure, what is ideal for heart function and dialysis preparation? Why was hypertension an issue? 4) After chemo can he get an increased dose of Zofran for his continued nausea or are there other things we can do? 5) Would Lidocaine be given for pain from all the tubes in him? It was uncomfortable for him to move without pushing the high-strength Delotid PCA. I had heard that Lidocaine had fewer side effects than Delotid so felt that would be a good option.
Dr. Sam Kache was the Attending for the PICU -- nothing escaped her keen eye and she was a master of orchestrating with all the functions needed to handle complex PICU cases. Dr. Fritz was the Oncology Pediatric ICU liaison and led rounds. He was a master of orchestration, coordinating with Cardiology (heart), Nephrology (kidney), and Respiratory (lung) physicians. I learned about Ronan’s VTECs (3 PVCs in a row, that could signal a ventricular issue though his QT was normal). We discussed how the PVC’s could be caused by the PICC line placed for chemo "tickling" his heart. Could they be pulled up? The more concerning possibility was that the pericardial mass around his heart was affecting its function. ACTION ITEM: A CT Scan will be done on “Day 7” in his pre-phase treatment (in 2 days, Thursday) to look at this mass. We also discussed the blood clot in his peripheral IV that was causing swelling, irritation and discomfort. ACTION ITEM: They were concerned about it and it would need to be monitored with an ultrasound to confirm it was stable and not "extending". A continued area of concern was kidney function. ACTION ITEM: his magnesium, phosphate, and potassium (cardiac electrolytes) would be examined as well as BUN and creatinine levels as markers of kidney function. In good news, 180cc’s of fluid had drained from his two lung tubes over the past 24 hours. The doctors asked about his mobility and I shared that he last stood up on Saturday night, so 2.5 days ago. ACTION ITEM: They want to see -.5 to -1L of fluid output today and then we can more work on his mobility. Leucovorin was started as part of the standard chemo treatment to help Ronan "clear" the methotrexate from the Pre-Phase. They discussed the possibility of doing another round of the Pre-Phase (the “baby phase”) if the Tumor Lysis was not resolved. Rituxamab (a drug added to the standard treatment for Burkitt Lymphoma just last year thanks to breakthroughs in research) would be given today as part of the Pre-Phase. Still no confirmation that it was Burkitt Lymphoma but they would honor my request to send the slides to the world’s top Burkitt Lymphoma pathologist in Utah. Stanford was world-class when it came to participating in consortia and collaborations across institutions. Thank god.
SUMMARY PLAN: 1) Daily EKGs to monitor heart health, 2) Chest tubes removed once output from each tub down to 100cc’s or less per day, 3) Work on him standing up (3 walks a day were ordered), 4) Ultrasound tomorrow to confirm that the clot is stable, 5) for high blood pressure, he would be given Nicardapine PRN ("as needed" based on MAP "mean arterial pressure" monitored on his telemetry).
At the end of rounds, Doctor Dan Levine (our lead Fellow for the PICU) came in and gave Ronan a summary of what was going on. CAREGIVERS, MAKE SURE THE DOCTORS ALWAYS DO THIS SO YOU DON'T HAVE TO. He asked Ronan after: “Any questions?” Ronan: “Can I have 2 milkshakes?” (Apparently his high dairy consumption wasn’t helping him clear the phosphates so Doctor Dan had asked him to lay of the milkshakes for a while)
We found a sense of humor around the tight quarters and Ronan using the (ahem!) facilities, while lugging around his pole and tubes, which required some help from the staff and/or me. “No lookey!” he would exclaim when he felt my eyes approaching to check on him. When a nurse went to check on him, he exclaimed “Hello!” and surprised her with his feigned enthusiasm. We all had a laugh about that. You have to find the humor at times like these….
Ronan’s lunch order included fruit punch Gatorade, chicken tenders, meatballs over pasta, rice krispies, and an orange popsicle. After lunch, he had some stomach pain. I told the nurse and wrote it on the white board in our PICU room, along with the time. CAREGIVERS: OBSERVING, WRITING DOWN, AND COMMUNICATING ANY SYMPTOMS IS A CRITICAL PART OF YOUR JOB. You know your child better than any of the medical providers so you will notice even small things that could be an early warning sign of an issue. As they say, if you see semething (or even have a feeling about it), say something. This can be a HUGE help to the medical team. I used a notebook with pages for each day, but know that doctors check the whiteboards in the rooms so I wrote it there also. And I mentioned it in rounds so it is not missed.
We had frequent visitors that day. His nurses returned every 2 hs to do a pulse check. In addition, a social worker, Kenia, would stop by and check on how we (especially me!) were doing. She was a wealth of knowledge and a bedrock of support. I would encourage every to use this resource as "free therapy" while you are in the hospital. I truly believe everyone can benefit from talking with the social workers in the hospital. It helps you process your emotions so you can release your fears and be the best caregiver you can be for your child.
Cardiology stopped by and we discussed Ronan's meds for managing the high blood pressure. A cocktail of three different drugs (1st, 2nd and 3rd line). 1st line drugs were timed (2x / day) and 2nd and 3rd lines were PRN ("as needed") based on thresholds of the telemetry monitoring his heart. They weren't taking any chances. Physical therapy also stopped by to help Ronan stand on the scale they wheeled in to take his weight (apparently, it's much more accurate than the scales on the beds). They helped him up and he stood for the first time in nearly 3 days.
End of day rounds were at 4pm with our Fellow. Action plan we discussed:
Foley (placed for urination since Ronan was on bed rest with hemodialysis) will be removed tomorrow
Assuming bloodwork continues to look good, he will move to 5th floor tomorrow
No visitors when on the 5th floor so grandma and brother (only parents allowed on the PICU floor due to Covid) can visit tomorrow in front of the hospital before we move.
The other bright light in rounds: Ronan could have a milkshake again. His phos levels were good. I walked to The Melt @ the Stanford Mall to get him a burger and milkshake as a special dinner treat. Unfortunately, I didn't notice the container holding the 2 milkshakes weakening with the impact of every step as I approached the hospital lobby. I watched in horror as Ronan's strawberry shake slipped out of the holder and onto the cement walkway about 50 feet in front of the hospital entrance.
But with a quick call, I explained what happened and the kind store manager gave me a replacement shake. The silver lining? Some extra steps for mom with no guilt of being out of the hospital. I was on an important mission: making Ronan's day a bit better.
Ronan napped after dinner. Afterwards, he was very much enjoying his Switch borrowed from the Child Life department at LPCH. While playing Super Smash Brothers at 10:45pm Ronan asks “Can you feed me?” I reply “Sure - what do you want to eat?” Ronan: “I dunno.” Good thing I had that stash of fruit and blueberry muffin from breakfast.....
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