January 15-18, 2021 "Surgery #14-Tethered Cord Release and Recovery"

What is a tethered 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 canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can cause lasting damage to the spinal nerves. 

Untethering involves a delicate surgery to release the scar tissue around the spinal cord to restore spinal fluid flow and the motion of the spinal cord. Surgery usually leads to improved strength and reduced pain. However, it does not always bring back lost sensory function. 

January 15, 2021 (Day 1 in the hospital) left home at 4am! Rayden was a little confused as to why we picked him up out of bed and put him straight into the van. He asked a few times where we were going but when we never responded he actually stopped inquiring and went back to sleep. When I turned down Manning Road he woke up and said "Why are we in Chapel Hill? I don't want to be here." He is a very smart boy, extremely aware of his surroundings. He knew immediately what was going on but surprisingly did not get too upset. He just kept saying, "let's cancel this and leave." We didn't have to wait long this time because Rayden was the first case! We were actually finished with pre-op and headed to the operating room in the wagon by 7:30am. Rayden took his little toy, 'hunter man', with him for comfort. Dr. Elton met us in the consult room at 11:30am (4 hours later). He immediately said "This kid is strong!! He put up a fight! It took 5 adults to hold him down to put him to sleep!" He said the surgery went well. He cut the spinal cord free with very little bleeding. As soon as he cut it free it bounced back up perfectly. The challenge was actually NOT the tether, it was closing him back up. The skin over the dura was super thin. He said he had to close in different layers. He had to free up the fascia so he suspects Rayden will be sore from that. The skin was pretty thin in the middle part of his old scar badly. The left side was thick but the right side was paper thin and needed a repair. He said you could actually see through it! He suspected it wouldn't allow for good blood flow the way it was. So now Rayden has a main incision and then a tiny incision on the right side. The potential for spinal fluid leak is bad so Rayden has to lay in bed for three days to protect the incision and allow it to close up well. He has to keep his head in line with his hips (no pillow). If he sits up Dr. Elton said he would have "the mother of all headaches!" He will take the dressing off at the end of three days to check the incision. He also has a catheter so we won't have to pull on him to change his diapers for a while. 

He placed Rayden in ICU for a 6-8 hours to get ahead of the pain and assured me that both parents could stay with him the entire time. We joined him around 12:30pm. I was so relieved to see him. He continued to sleep but woke up just a tiny bit to tell us there was a "whole in his back". He actually said he was in pain! He refused to move his legs at all. They tried to give him oral oxycodone but he wouldn't take it and got so worked up that the doctor decided to give him morphine in his IV. He drifted back to sleep but was soon complaining about "a pounding in his head" and his arm hurting really bad. The nurse decided his arm must be asleep so we rotated him to the other side. He screamed in agony but it was over quick. By 3:30pm he was awake pretty good talking and asking for chicken nuggets and french fries. So Michael went straight to the cafe and got it for him. I broke it into tiny, little pieces and fed him one piece at a time hoping he didn't choke. Eating laying down is pretty difficult, but he took a few bites and drifted back to sleep. He continued to drift in and out throughout the rest of the afternoon because of the pain medication. He spiked a fever around 8:30pm so they decided NOT to move him out of the ICU. He woke up throughout the night wailing in pain saying "My back!" It is so heart wrenching when you can't do anything to take the pain away. They allowed Michael and I both to stay with him throughout the night although we had to 'sleep' in straight back chairs. (Not our first time.) 

January 16, 2021 (Day 2 in the hospital) Rayden slept pretty good although the nurse woke him every couple of hours assessing him and giving medication. She was really diligent. He is on IV tylenol, IV morphine, IV antibiotic, oral oxycodone, oral senna, and his oral seizure medication. He will not move a muscle and does not want anyone touching him. We have to move him every couple of hours though to prevent bed sores. He screams in agony. He has started jumping even in his sleep and I'm wondering if he is having muscle spasms. Around 11:00am the docs decided to give him more morphine because he is tachycardic (heart racing on the monitor over 145), he is clammy and will not move a finger or drink anything. He doesn't want anyone touching him. He doesn't even want to hold my hand or his hunter man!!! They unhooked the IV in hopes that he will begin to eat and drink on his own. He sleeps most of the time. They backed off the pain meds in hopes to wake him more. I'm beginning to get very, very worried about him. We can't keep him drugged up, these narcotics will block his bowels, but he cannot stand this horrible pain! Lord, please intervene. 

Around 3:30pm they finally moved Rayden to a regular room. We ordered him pepperoni pizza, french fries and orange gatorade (his favorites) but he would not eat one single bite!!!! We ended up giving him oxycodone around midnight so he could rest. I had to force him to eat one graham cracker just so it wouldn't make him sick.  

January 17, 2021 (Day 3 in the hospital) Rayden slept pretty good after we gave him the oxycodone. The machine continuously beeped throughout the night because his respirations kept dropping below 12! Normal respirations for him would be 18-20 breaths per minute. He woke up around 5:30am talking and asking when we could go home. He was in pain, but not too bad until the nurse and I rotated him at 6am. The doctor came in this morning and said his heart rate was pretty high even during his sleep. She says his heart rate should be below 120 and it was in the 150s overnight. She wanted to hook the IV back up and give him fluids but Rayden was actually eating a little. He didn't eat much but it was enough for her to back off for now. The nurse took one of the IVs out of his arm leaving the other one just in case. He stayed awake the majority of the day talking to us, watching his ipad and even asked for hunter man. We even got a chuckle when two of his doctors did knock-knock jokes and magic tricks for him. He ate a good lunch and a tiny bit of supper. He did not need any pain meds other than Tylenol the entire day! The only time he really complained all day was when we rotated him. His heart rate went down to 105 later in the evening so that proved he was much better. His doctors were very pleased and optimistic about being able to start Physical Therapy, Occupational Therapy, and take out the catheter tomorrow. 

January 18, 2021 (Day 4 in the hospital) I'm very glad Rayden slept all night because I know this is going to be a rough, busy day for him. He only drank his milk for breakfast. He kept saying his belly was full. He hasn't had his peristeen enema system in three days so I'm sure he IS FULL. We've been giving him Senna and Miralax daily but to get it really moving I asked for some prune juice and miralax. This normally works at home. Around 8:30am the neurosurgeon working with Dr. Elton removed the dressing/bandage over the incision. Oh my goodness, that was so painful for him! Even though it hurt so bad, Rayden kept saying "just take it off!" He drank the prune juice around 9:30am and explosions happened around 11am. He was so scared as four of us tried to clean him up. Unfortunately the mud flap was not placed correctly and some got on his incision. We washed it with soap and water. We ended up having to remove the catheter a little early because more explosions happened. 

Soon he was feeling so much better, laughing at his mohawk hair, and eating a hot dog (one of his favorites). The nurse gave him a little bit of oxycodone before the PT and OT came at 1pm because she knew it was going to be painful. The therapists came with a plan to sit him up and walk to a tiny wheelchair to sit down. She even brought a walker if he wanted to take a stroll. Well, none of that happened. She helped me pull his pants over his incision by rolling back and forth. Then Rayden had to pull on one therapists arm to sit up while the other therapist moved his legs off the side of the bed. 

As he sat there he began to shiver and his eyes looked glassy. He started crying that his leg was hurting and he was dizzy. He tried soooo hard to be brave and strong. They said it might take a minute for his blood pressure to regulate since he's been lying flat for three full days. They tried to pin point the pain but I believe if he sat up much longer he was going to pass out. They lowered him back onto the bed and calmed him down. They raised the head of the bed and he seemed to handle that pretty well. So they tried working on his leg mobility. He handled that pretty good so that is now our assignment for the evening. He has to sit up in bed while mom and dad help him move his legs up and inward 10 reps each. 

Sitting up in bed seemed to make him feel much better as time went by. He even asked for gatorade and Doritos. He started playing with the toolbox and his new jeep they brought him. Michael and I decided to brush his teeth and give him a little sponge bath. I know this made him feel better. We soon got another scare when the nurse came back to see if he had urinated. Even though he drunk an entire 12 oz of gatorade he had not voided in several hours. She said if he doesn't within 6 hours of taking out the catheter she would have to do an ultrasound to look for problems. She brought two little heating pads to place on his kidneys in hopes it would make him pee. 

With no luck an hour later, she came in with the bladder ultrasound. It revealed that his bladder volume was at 191. A child his age should only hold a volume of around 210, so it was pretty full. The nurses changed shifts around this time and Rayden was so very upset to see Alissa leave. He cried and hugged her so lovingly. The new nurse gave him another hour with more heating pads but his bladder was clearly still asleep. A second scan revealed that his bladder was indeed full. At this point she decided to cath him to empty his bladder. We are hoping this will wake up his bladder so it will start working again on its own. He fell asleep within ten minutes of her leaving. WHAT A DAY!!!