The day started like this. Me: "Good morning sunshine, can I get you anything?" Ronan: "Chipotle!" What a beautiful start to the week. This kiddo was back to his normal, food-loving self -- what a relief!
The CRRT (Continuous Renal Replacement Therapy) machine ran from ~4pm the prior day to ~11:30pm before the filter clotted out, triggering all sorts of alarms in the machine. All the "gunk in his blood" (as the renal attending described it) from the tumors breaking down were not only a superhuman task for healthy human kidneys, but also for a mechanical ones. They typically want to get ~12 hours of filtering (vs. the 7.5 we got) before having to swap out the filter and the lines, since those changes don't come without risks. But the on call Renal Fellow was at the hospital within an hour and got the CRRT machine back up and running quickly.
And in rounds the next morning, Ronan's labs showed significant progress against ARF (Acute Renal Failure). . Phosphate levels fell from >10 to 5.7. There was some discussion with the Renal team, under attending physician Scott Sutherland, on whether HD (Hemodialysis) might be more appropriate than CRRT for Ronan given the fast clotting of the machine last night. The benefits of HD were a shorter time in bed (runs over 3 hs v. continuous dialysis) and a more powerful filtration, especially since he clogged the CRRT filter so fast last night, but the risk was how his body would respond to such rapid fluctuation in fluid levels. That was an unknown and not worth the risk given the cardiac and respiratory complications he was already facing. The Nephrology team decided to wait and see how long the CRRT round started around midnight would last and what the impact would be.
There was also some discussion before rounds about requirements to move from the PICU (Pediatric Intensive Care Unit) to the 5th floor (Hematology / Oncology). They were:
1) One day of stable labs (especially regarding ARF / kidney function)
2) No high flow oxygen
3) No Nicardipine drip for high blood pressure (the cardiac team would sub oral meds for this IV med)
But there were advantages to staying in the PICU from a parent's perspective. Namely, the tighter monitoring (more frequent labs, lower nurse:patient ratios), the ability to spend time outside on the patio, and the ability to occasionally -- when healthy enough -- take trips outside of the lobby hospital to see family (special approval required through the "visitor exception board" that meets every day at 3pm). But the benefits to the 5th floor were substantial: fewer germs -- especially on the "stem cell side" of the 5th floor, more privacy with a solid wood door(!) all the oncology experts on the floor for morning rounds (v. 1 ONC liaison physician in PICU rounds), and, most importantly for recovery, a more calm / peaceful environment.
So in the spirit of working towards the 5th floor, the goals for the day discussed during rounds with the cross-functional teams were:
1) Decrease pain meds (Delotid drip),
2) "DC" (discontinue) high flow oxygen, which can be more drying to the nasal passages, especially concerning for a kid with a history of nose bleeds and lower blood cell counts given chemo,
3) Step up the PT (physical therapy) and RT (respiratory therapy) given he would be bed-bound while on CRRT.
The next round of CRRT got us ~10 hours before the filter clogged again. Rather than starting it up again, we waited for lab results to see what additional dialysis was required. Labs were pulled every hour with an arterial line (HD catheter). Outside of some electrolyte imbalances they would correct with "cardiac lytes" (eg, magnesium, calcium & phosphate) through IV, the kidney function was looking good. Ronan wouldn't need more dialysis today with the addition of Cevolimir to manage his phosphate levels and extra fluids + diuretics to continue to assist kidney function. He was out of the woods ... at least for now.
During a nap, I made a trip down to the hospital gift store and found something I thought might help Ronan and Elliot through the difficult weeks and months that lay ahead: emotional support bracelets by a company called COLORS FOR GOOD. The bracelets are made by women on the Yucatan Peninsula in Mexico and provide much needed income to support their families. I selected the Resilience (black & white) bracelet for Ronan and the Strength (bright orange) bracelet for Elliot. Ronan happily received his gift with a "Cool!" and has sported it through all his treatments and procedures since. This is also one of Woodland's core values and if there's ever a time for Ronan to draw on this character strength, it is now....
After lunch, Ronan lamented about how he misses his friends. I asked him if he wanted to join the Virtual Learning Zoom meeting for closing circle at Woodland and say hi to his friends. His amazing teacher Ms. Dilday, jumped on the opportunity to reconnect the classmates and Ronan was greeted by such exuberant faces and a series of kind, thoughtful questions, mostly focused on how he was doing and how his classmates could help (eg, any books he wants to read but doesn't have? Nintendo Switch game? Favorite baked goods?) The questions from these caring kids warmed my heart and added so much cheer after Ronan's roller coaster week. He shared with the students: "Cancer is annoying. But the one I have isn't that bad." When his teacher complimented him on his attitude, he replied "Yeah, the pain meds sure do help with that." His final advice to the class? "Eat your broccoli -- it will keep you from getting cancer." It was a both heart warming and chilling comment. A child trying to make sense of what happened to him and save his friends from experiencing what he's been through.
Ronan's healthy appetite continued through the day. He was making up for lost time last week, when he was mostly too nauseous to eat (and keep it down). We decided to order in milkshakes for afternoon snack:
Me: "What kind of milkshake do you want?"
Ronan: "First of all, I want an extra large size please. Can I?"
Me: "Of course you can!"
Ronan: [with a BIG SMILE] "And chocolate flavor please"
A visit from the dynamic duo PT (Gaby) and OT (Michelle) helped Ronan learn exercises for his bed rest days and also helped him get into a wheelchair for a late afternoon trip to the patio. A perfect ending to a great day (or at least one spent in the hospital).
Comments