Spinal Fusion Surgery

My life changed on February 10, 2020 after meeting Dr. Jain at Johns Hopkins. The severity of my scoliosis was not recognized by my previous orthopedist. After being presented all options, Dr. Jain suggested surgery as the best course of action. That day, we scheduled my spinal fusion surgery for next month. Everything was happening so fast, so neither me nor my family were ready for what was to come.

After six hours in the operating room, my spine went from ~50° to 6°; needless to say, it was a success. My ribs, hips, and shoulders were also evened out. Recovery is expected to be six weeks to three months; this is the most challenging thing I’ve done so far.

I am very grateful to my pediatric orthopedic team, surgical team, pain management team, and all of the nurses at Johns Hopkins. We have a long road ahead to recovery, but I am most thankful for how close this has brought us together as a family. I also want to thank my friends for their thoughtfulness, FaceTime calls, and well wishes so far. I have the most amazing support system, and this would be way harder to conquer without then by my side.

My mom journaled all seven days in the hospital;

For Julia,

Friday, March 13, 2020 – Surgery Day!

Friday, March 13, 2020- Surgery Day We left the house at 4:30 A.M. to go to the hospital. We checked in at 5:30, and you were called back to the pre-op area a few minutes later. After changing into a gown and getting your back marked with a marker by the surgeon, the nurse put your IV in. It took three tries and both hands to get it in. You met your anesthesiologist, and she asked you what kind of music you liked. When you said Taylor Swift, she said, “Good. I’ve heard of her!” She played the music as they wheeled you into the operating room. I was able to come back with you to the operating room. When we arrived, they put the Taylor Swift music on the sound system in the operating room. Once you arrived in the operating room, they hooked you up to a few machines and some oxygen. I took your glasses and gave you a kiss. They gave you some medicine, and you were asleep in less than 30 seconds. We waited in the family lounge during the surgery. When we checked in, we received an identification number that we could use to track your surgery on a monitor in the lounge. The nurses also sent us texts from the operating room every 75-90 minutes to let us know that you were doing well. After about 6 hours, the surgeon came to see us. He told us that everything went well, it just took a little longer than expected. A nurse came to get us to take us to recovery, where we found you in and out of sleep. After about 2 hours, you were awake enough to be transferred to your room on the tenth floor of the children’s center in the adolescent wing. Your room had an amazing view of Baltimore. You met your nurse and settled into the room. You had a rough first evening. As the anesthesia wore off, your pain and nausea increased. You had an IV with pain medication and a button that you could push every eight minutes up to five times an hour for an additional dose of medicine. They took you off the oxygen and then had to put you back on it again because your oxygen saturation levels were dropping. They paged the pain team through the night because your pain and nausea were so severe. You were able to get a little sleep from 10:30 P.M. to midnight. Unfortunately, that was the most sleep that you would get for quite a what .


Saturday, March 14, 2020

Saturday morning the nurse from the night before was back. You were uncomfortable and threw up, which really upset you because you rarely throw up. A doctor from the surgical team came in and went through some exercises with you to check the strength in your arms and legs. Your surgeon came in next and was pleased with your progress. Before physical therapy, the pain team came in and made some adjustments to your medicines. Your physical therapist arrived around noon. She had you get out of bed and walk to the chair. The goal was for you to sit in the chair for an hour. You weren’t too happy about that idea because it was very uncomfortable. Fortunately, you fell asleep, so the time passed quickly. After about 75 minutes you woke up and the nurse helped you to get back into bed. Your lunch arrived, and you were able to eat a few bites of it. The rest of the day and evening were quite a challenge for you. You were struggling with pain and nausea. When one would improve, the other would get worse. You needed the oxygen again through the night. The pain medication seemed to wear off about 45 minutes before your next dose. Dad was able to calm you down when the pain and nausea were unbearable.


Saturday, March 14, 2020

Saturday morning the nurse from the night before was back.  You were uncomfortable and threw up, which really upset you because you rarely throw up.  A doctor from the surgical team came in and went through some exercises with you to check the strength in your arms and legs.  Your surgeon came in next and was pleased with your progress.  Before physical therapy, the pain team came in and made some adjustments to your medicines.  Your physical therapist arrived around noon.  She had you get out of bed and walk to the chair.  The goal was for you to sit in the chair for an hour.  You weren’t too happy about that idea because it was very uncomfortable.  Fortunately, you fell asleep, so the time passed quickly.  After about 75 minutes you woke up and the nurse helped you to get back into bed.  Your lunch arrived, and you were able to eat a few bites of it.   The rest of the day and evening were quite a challenge for you. You were struggling with pain and nausea.  When one would improve, the other would get worse.  You needed the oxygen again through the night.  The pain medication seemed to wear off about 45 minutes before your next dose.  Dad was able to calm you down when the pain and nausea were unbearable.


Sunday, March 15, 2020

You were only able to sleep from about 4-6 A.M. The rest of the time you were awake with high levels of pain and nausea. You tried to eat saltines, but every time you did, you threw up. It was awful. At 6:00 A.M. the surgical on-call doctor (same as Saturday) came in and checked on you. He had you do the same exercises as yesterday to check the movement in your arms and legs. He said that you were making good progress, and we would need to check with the pain team when they arrived to work on your medication balance. Your breakfast arrived a little while later. They had eggs that you really liked. It was the most that you have eaten so far since the surgery. Your nurse today was Natalie, and she was very nice. You really liked her. She was very sweet. At 8:00 A.M. the physical therapist. Kat, arrived. She got you sitting up on the side of the bed. She had you walk to the door of your room. You walked out into the hall and turned around and walked to the chair in your room. The goal for today was to sit in the chair for two hours. While you were in the chair, you noticed that your left hand was very swollen. The iv had gone bad and caused your left hand and arm to swell. They replaced your hospital bracelet with a new one because the old one was now too tight, and they moved it to your right arm, which wasn’t swollen and would make it easier to scan before your medications. They moved your iv to your right hand, since that line was still in. The pain management team came in around 10:30 A.M. They decided to stop the Ketamine and increase your Valium because you cannot have Ketamine at home (it is only in iv form). Every other medication that you are taking can be taken in pill form at home. They said that the Valium should be easier on the stomach than the OxyContin. They thought that eliminating the Ketamine may help reduce your nausea. After your time in the chair, they removed your catheter. You rested in your bed after your time in the chair. On Sunday afternoon you were able to walk to the bathroom and use the bathroom for the first time since the catheter was removed. We brushed your hair and put it up in a messy bun again. In the process, we discovered a piece of tape on one side of your head and a huge scab on the other side. At 4:00, they came in to take your vital signs. They gave you Valium, Tylenol, OxyContin, and Gabapentin (for nerve pain). After these medicines, you were finally able to get some sleep. You slept until about 6:00 P.M. and then you got up to use the bathroom. You were resting in bed, and then you ate some of your dinner. You had a quesadilla, white rice, a grilled cheese, and steak fries. At 7:30 you walked to the bathroom. Dad left to go home. He was coming back tomorrow after work and will stay overnight until Tuesday, when we will all go home. At 8:00 it was time for your vital signs and medicine. You were very tired and hoping to get some sleep. You didn’t think that you would be able to fall asleep, but by 8:45, you were fast asleep. You slept soundly until 10:30 when an alarm went off on your iv. One of the bags was empty. It took the nurse a long time to come, and it woke you up. I was furious that it woke you up. After that, you could not get back to sleep.


Monday, March 16, 2020

Just when we thought things couldn’t get any worse, Monday arrived. You weren’t feeling good at all, and you were reluctant to take your morning medicine because you were so nauseous. The nurse told you that you needed to take the pills because they were timed. You took a few bites of a banana to have something in your stomach, and you took your pills. About 5 minutes later, you threw everything up, including the pills that you had just taken. This certainly wouldn’t help with your pain, and it would be another four hours before you could have another dose. You didn’t want ginger ale, so I went downstairs to see if I could find seltzer water at the food court. When I came back to the room, a few minutes later, you were sitting in the chair, and there were blue towels all over the floor. Apparently, you had thrown up on the way out of the bathroom, and it landed all over your gown, the floor, and the bathroom door. You were even more upset now, because this was the second time today. The surgeon’s assistant came in to check on you while you were sitting in the chair. She felt that your pain and nausea were probably due to constipation, so she was going to talk with the pain team about some options. The pain management team adjusted a few of your medications, and when they left, the nurse helped you get back into bed. You napped for a little while. The physical therapist arrived, but your nurse sent her away to come back later after the morning you had. Your lunch arrived, and you were able to eat a few bites. Around 1:00, it was time to go downstairs for your post-op x-ray. A nice gentleman came with a wheelchair to take you to imaging. Dad went with you. You had to stand for front and side view x-rays. You were a little unsteady on your feet, so you had to hold onto the machine for the x-rays. When you came back to the room, the physical therapist arrived, and we all went for a walk in the hallway. You walked around the short loop on the unit. You didn’t feel like attempting the stairs today. When we returned to the room, your surgeon stopped in to show you the x-rays. Your original curve was 47-48 degrees. Post-surgery, your curve is 5.71 degrees, a huge difference! He let us take a picture of the computer screen with the after and before x-rays. Monday night you got a little more rest. You were awake for a few hours in the middle of the night, and the nurse talked with you until you were able to fall back to sleep.


Tuesday, March 17, 2020

We had no idea that it was St. Patrick’s Day today. Days just blend together in the hospital. We were waiting for the orthopedic team to make their rounds by 7 AM, but they did not arrive until 9. The pain team arrived a few minutes later, so both teams were there together. They presented all of the options for constipation, and you decided to try all of them, beginning with the suppository and the injection. Neither of these worked. The physical therapist arrived in the afternoon, and we walked a few laps around the unit and you tackled the stairs. It was tiring for you, but you did it! Now you were cleared to go home by physical therapy. In the evening, the nurses gave you an enema, which was very traumatic for you. It worked a little. At 8:00 you drank the magnesium citrate, which we were told works all the time. It did NOT work for you. All it managed to do was upset your stomach. You were awake and feeling miserable ALL NIGHT. At 5 AM, we were terrified when you suddenly had a sharp, shooting pain radiating down your left arm. We called the nurse in three times, and she felt that it was a muscle cramp in your arm. The arm pain continued for at least two hours.


Wednesday, March 18, 2020

We waited for what seemed like forever for the orthopedic and pain management teams. They both decided that getting your stomach working again should be the top priority. The pain team ordered the injection again. It arrived late morning, and after about 30 minutes, it worked! You were in and out of the bathroom multiple times throughout the day. You were able to get a shower today! You felt like a whole new person after that! In the afternoon, you were able to walk a few laps around the unit. You also face timed a few friends, and seemed to be feeling better. The Child Life Specialist, Olivia, came by and brought you a bingo card. You were able to tune in to channel 70 to play bingo. After the game, Olivia came to collect the card, and she delivered a pillowcase and a blanket for you to keep. She also asked what kind of games and activities you liked. You said that you liked Legos and strategy games. She brought you a Rummikub game that you were able to keep and take home. Olivia also decorated your closet door with “Julia’s Room” and confetti with fluorescent marker. Dad left to go home for the evening. He was going to work on Thursday in the morning and then he was coming back to pick us up. When he left, we ordered dinner for you from Uber Eats. We ordered a pizza, but the nurses said that the order would probably not go through, so I ordered Chipotle for you. You did not want Chipotle, but it was too late to cancel the order, so that was also coming. I ordered a Hawaiian pizza from a second pizza shop, so you ended up having three dinners delivered! You walked the halls off and on in the evening, and we settled in for a VERY LONG NIGHT. You did not sleep much at all. You were back and forth between your bed, the bathroom, and the hallway.


Thursday, March 19- Going Home!

After a very long night, the doctor came in on Thursday morning. He took off your dressing to see your incision, and it is healing well. He replaced the bandage and told you the poking that you were feeling was probably knots from the sutures. Your incision is sealed with glue, so there are no external stitches to remove. We walked the halls for a while in the morning to get you up and moving. The Child Life Specialist came by around 11:00 with materials for a craft that you could do along with the specialists on channel 70. I went to the pharmacy downstairs to pick up two of your prescriptions, and the rest were delivered to our room. We packed the rest of our bags to go home. I got you a shirt at the gift shop, and then I went back downstairs and face timed you to show you what shirts they had. You chose a shirt and a fleece. When I got back upstairs, Dad had arrived, so it was time to get dressed and leave. A nurse and a student nurse helped us get downstairs to the car. We took a few pictures outside, and Dad helped you into the car. The road was really bumpy, so fortunately you fell asleep and stayed asleep for the ride home. We were supposed to stop after about 30-40 minutes, but you were sleeping, so we decided to come straight home. When we arrived, you wanted to take a shower, so we figured out how to do that, and then you spent the rest of the day resting in the recliner. We headed upstairs to bed around 8:30, and I woke you up almost every hour for your medicines.

I will be posting more updates on at-home recovery.

Love,

julia grace

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