December 26, 2020 "Christmas Break"

Mom and Rayden created a gingerbread house. 

Rayden got a truck with a dump bed. 

Twinning brothers. 

It actually snowed a little on Christmas Day.


 

December 2, 2020 "Spine MRI"

Symptoms that made us call neurosurgery. 
1-Rayden has been falling a lot in the past few months. He is using his walker all the time at school. His PT even noticed his increasing weakness. 

2-Even though we have been using the peristeen for bowel clean outs nightly for the past 3 1/2 years, it's not working anymore. 

3-His toes are curling and his legs are turning inward more causing little blisters on his ankles. 

4-He is complaining of pain in his legs and sometimes 'tickling'. This complaining has increased. 

5-He screams that I am hurting him when I touch his feet. 

6-He started to walk one morning and his knees buckled with every step. He was beyond weak that entire day. His legs even pointed outward prompting him to ask what was wrong himself! 

MRI-December 2, 2020

We left at 8:30am because Rayden's appointment was scheduled for 10:30. Of course he hadn't eaten anything since 6pm the night before. As we sat in the hall away from everyone else, Rayden couldn't help but notice all the people going by with their lunch. We tried to keep him distracted by playing with a few toys from his bag and looking at pictures and videos on our phones. After two hours we were all getting a little antsy. They finally called Rayden back around 1:00! Even though the hospital recorded in his chart that he had a bad reaction to propofol after being on the ventilator from his seizure, the anesthesiologists disagreed. Because he had propofol before surgery in the past with no reaction, they thought it was a combination of all the medicine given in the ER and the seizures, not the propofol. At 1:45 they finally gave him versed to calm his nerves. 

He actually started asking to ride in the wagon so they wheeled him down to MRI at 2:00. He didn't seem to mind when they placed him on the table. One of the doctors even gave him his phone playing Blippi. But when they came toward him with the gas mask he started screaming and crying. I guess the versed didn't work as good as we wanted. It didn't take a minute and he was out. They informed us that it would only take about 45 min to do the scan and he would be back upstairs in post-op. Michael and I waited and waited out in the hallway. I went to the desk and reminded them that he was suppose to see the neurosurgeon to reset his shunt before they leave. THREE hours later they finally called me to go in there. Melody, from neurosurgery, was in there already. She informed me that his scans were not uploaded yet so they would call me tomorrow with their findings. 

Rayden finally started coming around but his speech was slurred. That worried me so much because it reminded me of his seizures. Needless to say, we didn't leave until 7:00pm. We ended up eating a convenient store hot dog and Doritos in the van on the way home (what a great dinner)! 

What is a tethered spinal cord?

A tethered cord is a spinal cord that is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can lead to possible nerve damage, pain and other symptoms. In most cases, the condition becomes worse over time. 

Tethering at S1

Results-December 3, 2020-Melody called with the results from Rayden's MRI. She stated that Dr. Elton and his associate saw that Rayden's spinal cord was indeed tethered at the S1 level. This explains all the symptoms we are seeing. They also saw a 'wispy' area higher up in his spine. Dr. Elton called it a 'dilated central canal'. The radiologist identified it as syringomyelia at the C5-L1 levels measuring up to 3mm in transaxial dimension. He believes it is fluid in the central canal related to pressure or tension on the cord. He thinks that once he releases the tether at the bottom which is causing all the tension and pressure, the fluid will dissipate. They plan to do a follow up MRI a few months after surgery to verify if this happened. Surgery is scheduled for January 15.

Dilated Central Canal from C5-L1. 
This picture just shows a little of it. 

December 23, 2014

We have been seeing more good days than bad so I scheduled a tele-visit with Dr. Elton this morning. He said this is normal with tethered cord. He explained that if we wanted to wait and watch a while he understood but he would consider Rayden a 'more urgent' case and would like to get this corrected sooner rather than later. He says that the surgery can resolve pain but once the weakness and loss of function happens those things are gone forever. He explained that he expects Rayden's surgery to last anywhere from 2-4 hours but he really won't know until he gets in there. He expects Rayden to be in ICU overnight then moved to a regular floor for 3-6 days. He will need to lie flat for 2-3 days to prevent any CSF leaking through the incision. He is at moderate risk for this happening and if it does he will need to go back into surgery to close it up. Once home he would have 2-4 weeks with minimal activity before being released to normal activity.