Shortly after I posted my update yesterday, things took a turn for the worse. Cade woke up from his nap on the couch around 11:30 and was fussy and wanting me to hold him. So I moved him over to sit with me on the reclining chair and got him all situated on top of me when the nurses walked in the room. I told them he felt like he was on fire and he looked miserable. His breathing was labored. I could feel his pulse beating from his jugular in to my chest from how he was laying on me. They checked him. His temperature was 104.9.
The bodys natural reaction to a fever is to increase its heart rate and respiratory rate as it’s trying to compensate and adapt to the fight. His body is definitely trying to fight something. From that moment on it was constant assessments and vital signs between the nurses, the PA, and the attending oncologist. They ordered a fluid bolus to see if that would help his heart rate come down and the strength of his pulses ease up. The nurse explained to me that they will try up to 3 boluses and that is their limit. If their pulses and heart rate don’t improve by the 3rd fluid bolus, then they are transferred to the ICU for further management. The doctor was trying to get Cade to talk to her, asking him questions, checking whether or not he was coherent or if we had more to be concerned about. Cades reply was finally, in a sassy tone, “I don’t wanna tell you!!” We both laughed. That counts! He’s good. At the first follow up temperature, the thermometer wouldn’t even read. Us nurses know this is never a good sign. It means the baby/child is either way to cold or way to hot to give a result. This means Cades temperature had gone to over 105.
We went through the 3 boluses quickly with little to no improvement and soon enough, ICU was consulted and one of their doctors was at the bedside assessing him. The oncologist was in the room as well explaining that the high fever and other things going along with it are the definition of sepsis. He is not overly concerned and feels that Cade looks good right now. That is why he is sending him to the ICU because he does not want to have to become concerned about him. The ICU can closely monitor him and catch any further changes quickly and intervene as necessary. His blood pressure was holding strong, which was good. But in the event that it began to drop as well, then they could give him different medications to help support that too. Right now the best place for him was the ICU. By 3pm I was lying next to Cade in his bed and we were being wheeled across the hall to the Peds ICU. They got him all connected and updated me with everything they were going to watch and send off as part of their septic shock protocol. His oxygen levels were okay, but they put a tiny oxygen mask on him with a couple liters just per their protocol. His HR, Respiratory rate, oxygen, kidney perfusion, amongst other things were now being monitored by the machines that now surrounded him. His IV pole doubled in size as he now had his normal maintenance fluids running, TPN and lipids running, a line running to monitor his central venous pressures, and multiple lines for medications. They have him on 4 different antibiotics, anti-bacterial, fungal, and viral to cover all bases. On arrival to the PICU his temperature was down to 101.9. My reply led the nurse to say, “oh, that is an improvement then?” And I told her yes, he was 105 a couple hours ago.
By the evening his temperature had begun to creep up again to 102 and 103. They decided to give IV Tylenol instead of oral as it works much better for some kids. In all my years as a NICU nurse, I honestly never knew Tylenol could even be given IV. It did work fantastic though. By 10pm his temperature was normal and his HR and breathing had come down significantly. They unfortunately were running in to issues with access due to the amount of medications he was on and the compatibility of them with each other and the other fluids. So they needed additional access which meant he had to get an IV placed. He was finally comfortably asleep so naturally I was frustrated. But he needed blood and platelets and they needed somewhere to be able to give the products. I knew it was necessary. He gets a lovely side effect of Vancomycin called red man syndrome as well. Go figure. It causes the head to get bright red and requires not only to be premeditated prior to doses, but for the drug to run over 2 hours to reduce this effect. This adds to the access issues as he gets it every 6 hours and needs it over 2 hours each time. Ugh. Can we add anything else to the mix?! Thankfully he slept through the worst of it and woke up after the poke and IV was already in. He did great and then fell back asleep right after. Not before telling me that daddy needed to bring suckers tomorrow when he came to visit. So I text Chris to tell him this as well as to bring more pull ups because our juicy farts and accidents continue to happen, poor baby. Well I got yelled at and told to “go to bed mom” and then I must have been fidgeting to much doing so, because he shortly after asked me if I could go lie in my own bed for a while. This occurred a good 3 more times throughout the night. I was beckoned back and forth in and out of his bed. So needless to say, I didn’t get much sleep. By 12:30am his fever was back to 102. This happened again, the fever was completely gone and then by 6am back to 103. The IV Tylenol worked great, but by 4 hours he was burning up again. They decided to lower his dose and change it to every 4 hours from every 6 to give him better coverage. Sarah was our nurse over night and she was wonderful. The doctor wanted to start a small amount of feedings and she said she had been delaying it all night because she wasn’t comfortable with it and wanted to talk to me. I told her it’s not happening and that she could tell that doctor that I said absolutely not. We stopped feedings Sunday night due to the mucositis and started TPN/IL for that very reason. Why would I allow you to restart them, no matter how small the amount, the very next night. No thank you (as my boys frequently say).
This morning he was still up and down. But his spunkiness was starting to come back more and he was talking and interacting more with the nurse. At one point he layed back down to sleep more after I told him even though it was daytime, it was ok if he still wanted to close his eyes and rest. He asked me if I had chips. Or that’s what I thought he said. When I asked, he said “no. Do you have tips. You know, for the wax in my ears” as he pointed to his ear. This made me laugh. Too cute. So we cleaned his ears and he fell back asleep. The doctors were happy with how he looked this morning compared to yesterday. Saying that a sassy attitude isn’t always a bad thing. Haha. They are going to allow him to have clear liquids if he wants them. He had been asking for stuff all night, so he was happy to get to drink. We swabbed him for a viral panel to rule out simple viruses like flu, rhino virus, and paraflu which causes croup. This unfortunately buys him being in isolation now until the results come back. If they’re negative, then it’s lifted. If its positive, then we at least have an answer to what is causing all of this. We may never have an answer though. The mucositis itself could also be the culprit of the infection because we have so much bacteria throughout our GI tract and when our counts are non-existent, the bacteria, good or bad, takes advantage. He got to have the kidney perfusion monitor taken off for a while and his oxygen mask got to come off as well. As soon as Rylan walked through the door, Cade naturally popped up and began talking and being playful. Children really are the best medicine for everyone. Even each other. ❤️ His fever is starting to creep up again at the moment and he will get Tylenol again soon. Overall he is doing well and everyone is happy to see this. They are going to reassess him later this afternoon and decide if they can maybe send him back to the HOT unit/oncology floor. This would be wonderful! 🙏🏼 Prayers for continued healing and strength to fight off this infection.
Our Warrior Journey 