Surgery Day

Tuesday December 8th

As an "add-on" we did not have a definitive time for William's procedures. Therefore, he was restricted from feeding early in the morning in preparation for going under anesthesia. The plan for the tests and procedures to be done that day kept changing as the oncology department scrambled to coordinate the schedule to get as much done as possible while William was under.

The endoscopy and colonoscopy that Dr Karjoo wanted to do was put on the back burner. The doctors followed a protocol dictating which tests needed to be completed to determine the stage and severity of risk factors for William's neuroblastoma. Finally it was set that he would have an MRI of his cervical area, thoracic spine and lumbar spine (requiring approx 2 hours), a bone scan, some x-rays, 1-2 bone marrow sample extractions, a biopsy with inspection of the tumor, and a central line put in place. Once we left William at the imaging center where his long day of testing began, we received a call from the oncologist saying they wanted to also include an auditory brainstem response test (ABR) during the MRI. This is standard protocol for the condition and is required to determine a baseline of his hearing, due to the possibility of permanent damage to his hearing from chemotherapy.

That evening after being under anesthesia for nearly eight hours, William was taken to the Pediatric ICU for recovery. He was still on the ventilator and required repeated doses of sedatives because he was "fighting" the vent. Once he was stabilized, we were allowed to see him.

His room in the PICU

I'm nearly certain the day of this surgery was the longest time period William and I have ever been apart from each other. It was very difficult to see him with all these tubes coming out of him, a breathing machine performing his breaths and being in the middle of a room with alarms beeping everywhere.

He was extremely swollen with extra fluid from all the IV fluids pushed through him and from the anesthesia and medications.

William had an exceptional nurse in the PICU. She was wonderful with explaining everything to us and seemed very detail-orientated and knowledgeable of her job. She showed us William's new "accessories." To our surprise, they put in a Double Hickman catheter (the whole white tubing curl and the 2 lines with red, white and blue caps on it). We were rather shocked seeing this, since we were expecting a little lump under his skin near his collarbone like what you see other people receiving chemo with). Additionally, William's incision from the biopsy was under the white dressing.

Around 12:30am, Dr. William Hanna (who we dubbed Dr. House for his quirkiness), directed a room full of staff to extubate William. Up to that point, he was fighting the vent so much, they felt the amount of sedation he would require to stay on the vent through morning was more riskier than getting him off the vent before previously planned.

That was definitely a tense experience to watch - and one I think I'd prefer not to see again, I will plan to leave the room.

After 2am, a very exhausted Mommy and Daddy headed down the hall to our room for a little rest. We stood in the hall and watched William's vitals on the central monitor (they are located about every 50 feet down the halls of the PICU). Of course, Mommy was back an hour later.

By 11:00am Wednesday morning, a number of William's tubes, including the horrible scalp IV, was removed. He had a pretty bad reaction to the tape used to stabilize the tubes and the tape put over his eyes during surgery.

That entire morning, William remained on continuous morphine to keep him comfortable. He slept the entire time, with occasional moans here and there.

Grammy and Poppie joined us early in the morning. I guess we all got a little punchy from the high stress and lack of sleep that we had the guys pose on the toilet in the middle of the PICU room.

Daddy's thinking pose - since we all know his best thoughts are on the throne.

Poppie's favorite

Phee eeeu, guys!

all while William slept away...