Saturday evening the Nephrology team made the call: Ronan needed dialysis, and urgently. His creatinine, phosphorus, & BUN levels were still going up. So he would go back to the Operating Room (OR) tomorrow morning to get a temporary dialysis catheter put in. Through this arterial line, we would be able to do the hourly labs required for Continuous Renal Replacement Therapy (CRRT) with a lower infection risk and also more closely monitor blood pressure. While he was in the OR, he would get a tube in his left lung to drain the growing pleural effusion there. And finally, he would get his second Lumbar Puncture (LP) and dose of IT chemo since they Oncology team could deliver this when Ronan was already under anesthesia.
Dr. Shellie Josephs and the rest of the Interventional Radiology (IR) team came in on Mother's Day Sunday to do this emergency procedure. I was so grateful for the continuity in the team and appreciated everyone coming together with very short notice to get these 3 live-saving procedures done. These 3 procedures would save him from Acute Renal Failure (ARF) from Tumor Lysis Syndrome (TLS), respiratory impairment from the malignant pleural effusions, and the aggressive late-stage Burkitt Lymphoma.
As they wheeled Ronan away for the third time that week, I couldn't hold back the swell of emotions that overtook me. As I sobbed for my suffering son, reflecting on a rare moment of vulnerability I shared with Ronan awoke early that morning with stomach pain. As he was curled up in agony, he questioned why it had to be him... why he had to have cancer. I honored the immense anger and sadness he was feeling, sharing how I felt that too for the past several days. And then I wondered out loud whether perhaps this was happening to him because he, of all the kids out there, was strong enough to handle it. I shared how I believe the universe doesn't give us more than we can handle. That if we face these challenges bravely, there is a gift waiting for us on the other side. And I knew that Ronan would defeat this terrible cancer and emerge on the other side stronger, with a different perspective on the world, a perspective that would be the very source of future greatness and happiness, at a level he may not otherwise have found. These were deep thoughts for a 10 year old, let alone in the wee hours of the morning, but he listened, contemplatively, and released a big sigh as he mulled it over.
The Attending PICU physician, Dr. Mihaela Damian, was incredibly kind and supportive to me through this challenging Mother's Day. She too had a 10 year old son who was but 3 days younger than Ronan. She advocated for a Patient Controlled Anesthesia (PCA) for Ronan, gently but directly setting the expectation for some challenging days ahead, and coaching me that I needed to stay positive and upbeat for him now more than ever, though it wouldn't be easy. Her encouragement strengthened my resolve to be the best mom a boy has ever had, at the moment I most needed it -- this absolute low point for Ronan -- and for that I will be forever grateful.
After surgery, Ronan returned with his new accessory: a Delotid PCA he could push every 8 minutes. With his IV, PICC line, 2 chest tubes, a dialysis line, and a foley, the poor kid was so weighed down by equipment. Lidocaine would given during the procedures as a local anesthesia that would last for 12-24 hours, but after that he would need the PCA. I learned later that children with PCAs receive, on average, less pain medication because having one actually reduces anxiety and their perception of pain. All Ronan's "equipment" required bandage changes every few days, which came with sticky tape that was painful to pull off. Having the PCA was a huge help for his anxiety about these bandage changes, and lessened the pain when he needed to move (eg, for his physical therapy sessions). The other thing that was painful for Ronan was his respiratory exercises, which he needed to do multiple times a day given he would be confined to bed while on CRRT. Between the fluid in his lungs and the decline of walking, this boy who was only a couple weeks ago the fastest runner in his class, was having trouble using his diaphragm to take and sustain long deep breaths.
The team returned from the OR in about 2.5 hours. It all went well. He was awake for only a short while after a cocktail of Ketamine, Propofol, Fentanyl and Midazolam plus Zofran to protect from post-op nausea. They had already drained ~350 mLs from his left "10 French" chest tube, using Alteplase tPA (tissue plasminogen activator) to keep it "patent" (unobstructed). The ~6 person team did a post-op huddle in our PICU room. All the procedures were successfully executed. The IR nurse pulled me aside after the huddle to say how hilarious my son is. She said she had a good laugh when Ronan, as he was falling asleep and she was removing a bandage from his skin, politely instructed her "'Now I'm the kind of guy who likes it slow and steady, not fast and furious.' and we were all cracking up, never heard a kid say that before!"
One other addition today were some new medications for his cardiac challenges. He was now on Hydralazine and Amlodipine PO (by mouth) and a Nicardipine drip (IV). He was having "slight arrhythmias" 1 SVT and PVCs "here and there". And his systolic blood pressure was spiking at 190-210, when it shouldn't be going above 130.
The nephrology team arrived shortly thereafter with the CRRT machine to attach to the hemodialysis catheter that was placed on the external jugular. Before signing the parental consent form, the resident reviewed the risks with us: allergic reaction to the filter itself, low blood pressure, bleeding, infection, low calcium, electrolyte abnormalities, decrease urine output... the list goes on. But nothing life saving is without consequences. We started the CRRT around 4pm and waited. Ronan awakened when we were chatting with the nurse and she shared the expectation that he will be on the CRRT machine for 2-3 days. Ronan's lighthearted response: "Well that sucks!" Fortunately we didn't have to wait that long for Ronan to start feeling better. With Cartoon Network on (his favorite hospital TV channel) one of the ads got his attention, "Mom, a Chipotle ad! Ooooh... speaking of Chipotle...." So we ordered up some takeout burrito bowls (the carne asada is Ronan's favorite) and I called in some fruit and a Red Velvet cupcake from the Room Service menu for his dessert.
One of the PICU nurses brought me a Mother's Day gift from LCPH -- a mug with an adorable frosted sugar cookie shaped like a cheerful yellow flower and some chocolates in it. I placed it in the window alongside the rose my youngest son had brought me and the "vase of flowers" he made me. She offered her condolences that I had to go through all this on Mother's Day. But as Ronan and I settled to watch Rio 2 with our Chipotle, I felt only gratitude and happiness. This hospital had just saved my son's life. It was the greatest Mother's Day gift I would ever receive.
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