Long day, strong boy

The day started early, heading down to the OR at 6:50 am for a 7:30 surgery to pull Ethan’s central line/CVL (central venous line). Ethan received his platelet transfusion on the way there, his second in 12 hours, to ensure he had over 50,000, the lowest threshold allowed for surgery.

We consulted with the nurse, anesthesia and the surgeon prior to wheeling him in. The anesthesiologist agreed to try deep sedation and would only use general anesthesia if absolutely necessary. That sounded great with me, as the general anesthesia could aggrevate his pneumonia.

They gave him some Versed prior to going in the OR, which made him sleepy and then put him to sleep. He was pretty tired, as he was still battling his fever, and had been all night. Because he fell asleep in the pre-op holding area, I didn’t go with him into the OR. I headed to the waiting area, had time to drink a cup of coffee, look at a magazine, talk a bit to Daddy on the phone, and then within 30 minutes received the call that they were done. I arrived in the post-op recovery room and Ethan was awake, still seeing double (due to the sedation drugs), but was feeling well and wanting to go back to our room. It took longer than expected to get out of there, but all went well and we were back in Ethan’s room by 10:30 a.m.

Ethan rested for the morning in bed, watching TV. An infectious disease doctor came to talk to me about Ethan’s bacterial infection. The bacteria is a fusobacterium, which can be treated with antibiotics. Ethan’s oncology team called this doctor in to review the appropriate treatment for the infection, to ensure he was on the right antibiotics. This doctor took him off gentomycin which he was just put on the other day, stating that wouldn’t do anything for his infection. And he concurred that the other two antibiotics he was already on would be the right ones to clear the infection (Zocin and Vancomycin). He had to research a bit about how long Ethan would have to continue to take them to clear the infection, and would be back in the afternoon with his attending doctor.

In the meantime, we headed to radiology for Ethan to get a CT scan of his chest so they could get a better look at the pneumonia in his lungs. Ethan did a great job, and we returned within 40 minutes. Upon arriving back, Ethan took a long nap. His fever was still persistent, even through the Tylenol. The infectious disease doctor came back, with the senior doctor. It’s unclear where the infection started, but the bacteria is often associated as an oral bacteria. While they didn’t have more specifics on the species of the bacteria, they determined Ethan would have to be on the antibiotics for 10-14 days after his counts come back up. The infection has to be cleared to start transplant and put in a new CVL, so we can expect that transplant may be bumped by at least one week. Over the next day or two, they would like to see an ultrasound of Ethan’s CVL site done, so they can see if there is any blood clots that could be harboring the bacteria too. If there is a blood clot, it’s too thick for the antibiotic to penetrate completely, and they’d have to put him on blood thinners.

Ethan’s fever subsided for a few hours during the evening, and he enjoyed a visit from Ti Tia (“auntie” in Portuguese). We chatted and caught up on Joey and Cassia’s activities, and then enjoyed over an hour in the garden. We wheeled Ethan around in the cart he was lying in (he spent the day in his hospital gown from surgery, something he never wears), and then Ethan enjoyed Ti Tia’s stories and tales from her childhood in Brazil, while Mommy did a few walking laps around the garden. The fresh air felt great, the humidity was breaking. We concluded our time outside, watching the Medflight helicopter take off from the top of the building we were next to. Ethan enjoyed the noise and the excitement. Even Mommy and Ti Tia found it entertaining.

Ethan was a trooper today. He didn’t cry once. He grew used to, although very protective of, his new IVs, one in his right hand, and one on his left arm. He just kept rolling with the punches. He’s determined, and he will get through this.

The doctors here are amazing…taking time to explain every thing, answer every question (and do I have a lot of them!). They call in additional teams when more specific expertise is needed. We are so fortunate to be here (well, you know what I mean).