Day 62: April 17th
Surgery day.. Z and I stopped by this morning around 9 to visit with little man before surgery. Tori was once again his nurse, which I was so grateful since she was familiar with how he responded post-op last time. It was a different surgeon this time performing his surgery since Dr. Handler is out of town until next week. We said our goodbyes as they wheeled him off to the O.R. Room around 10am.
Around 11:30, we were informed by the O.R. That they’d be heading back to his room in the next 10-15 minutes. Surgery had gone well. They had to make 3 incisions, one on his head, one behind his right ear, and one in his abdomen. They released 27cc’s of cerebral fluid from pocket on his head. Ryker arrived just before 11:45, and his nurses worked on getting him all settled back in his room. About 5 minutes in there was a moment of panic. His chest was not moving, his heart rate and oxygen rate had dropped dramatically, and he became stiff.. Everyone rushed to the room to try to get him to breathe again. I honestly was scared that we were losing him. After a few minutes (although it felt like an eternity..) they finally got him breathing again and is oxygen saturation levels up. They immediately called for an X-ray to see if his vent tube perhaps just wasn’t in the right place. They were concerned he may have experienced a seizure, and called for an EEG to monitor if he had anymore episodes.
X-ray came back, the vent tube looked fine, if anything a tad far in. It took him a bit longer to wake up out of anesthesia, but once he did, he was showing signs of his feisty little personality. He seemed to stabilize for a bit and Zylee was getting tired of being in the room, so I took her downstairs to see if she could go to drop in. Unfortunately they were full, so I stopped by the cafeteria to grab her a snack in hopes to keep her happy when we went back to the room. That’s when I received a call from his nurse saying he had another severe episode of bradycardia, apnea, and concerned it was another seizure event. This time however they had the monitor on him to verify.
I ran back upstairs in fear.. he was back up on his oxygen and heart rate by then. Apparently his heart rate read as 0 on the monitor and his oxygen levels dropped down into the 30-40 range. Neurology talked to me and said they reviewed the EEG report and it didn’t look as though it was a seizure. She explained to me that the length of the episode was quite short, and could be a sign of irritability in the area of the brain, which could be prone to seizures in the future. They were thinking perhaps he was experiencing pain due to the fact that he would drop his heart rate with simple touches. So they started morphine in hopes it would help. They also gave him blood since his hematocrit was on the lower end pre-surgery, and his blood pressure was low post-surgery. Neurosurgery also came by to inspect him, and couldn’t see anything abnormal on their end of things.
Ryker continued having episodes about every 1.5-2 hours where his heart rate monitor would read zero for a few seconds.. then come up to 50-60’s and his oxygen levels would drop to the 30% range. The whole staff was called to rush in several times to try to problem solve what he was doing. He would need to be bagged with 100% oxygen for a few minutes to get him back up to the normal ranges. They ordered an EKG and head ultrasound to continue the problem solving game..
We also noticed his heart rate when “stable” was hanging around in the 120’s (normally 150-170’s) and he was much colder than he normally has been.
EKG read back as normal, and his neurosurgeon reviewed the ultrasound briefly to see if there was anything that immediately stood out as abnormal. From what she could tell, nothing look obviously abnormal, however we would wait to confirm once radiology has a chance to read it.
He had another big episode as they were shift changing. I suppose this was good so that the day shift nurse was able to walk through with his night shift nurse what he had been doing all afternoon. They got him stable again. His team for the evening requested a variety of blood and urine tests to check for infection. They started him on a wide range antibiotic just to be ahead of the game if there were any signs of infection. They also decided to put the EKG on him longer in hopes to capture his low heart rate drops and see more of what was going on. He had a few more events through the night, and would generally happen when he would get touched, or randomly angry. However they seemed less severe compared to earlier in the day. After reviewing the EKG, they decided to rule out any heart issues.
The mystery continues.. I’m honestly thinking it’s anesthesia related. He had heart rate & oxygen drops when he had his subgaleal shunt surgery, although not as severe.. We’re hoping all of the blood tests come back negative.. I’ve decided to stay the night, Nick drove down here so he could stay with Zylee and the Ronald McDonald House. Hoping for a calmer night..