Coming home was an adventure none of us were prepared for. At Johns Hopkins, everything was taken care of; now, we needed to take on new roles as recovery progressed at home.
I survived on popcorn, dark chocolate, m&m cookies, Trader Joe’s sour cream donuts, and Face Time throughout this week. I love my friends, and am so thankful that they took time out of their days to talk to me each and every day (sometimes multiple times a day). I’m lucky enough to have seven specific people I can always rely on and who will always talk and answer my calls no matter what. I also know my friends appreciate having someone to talk to or distract them during the middle of this pandemic; in that perspective, this surgery was very timely.
I am also very thankful for my parents who have supported and taken care of me. Without them, I wouldn’t be able to make it through the day.
My mom journaled my second week of recovery; this was also my first week at home.
Friday, March 20, 2020
You woke up at 2:30, and we gave you your medicine. You walked around the hallway for a few minutes to stretch your legs. You were up until about 4:30, and then you got back into bed and fell asleep until 8:30 A.M. At 8:30 we got up and went downstairs. You walked around downstairs for a few minutes and then we got you settled into the recliner. You ate some popcorn and half of a sour cream donut throughout the morning. Your surgeon called in the morning to see how you were feeling. We went over your medication schedule and some of the pains that you were having. We spent the day alternating between walking around the downstairs and resting in the recliner. You face timed a few of your friends in the afternoon, and that seemed to distract you from the pain. Dad came home at 3:15, and we spent the evening continuing to alternate between the recliner and walking. You were in extreme pain, so we called the on-call doctor to see if she could adjust your medicine for the evening. She increased your Dilaudid for the night to help you sleep. We went upstairs to go to bed around 9:30. We brushed your teeth and got you settled into bed. I set my alarm for 11:30, 12:30, 1:30, 3:30, and 4:30 to give you your medicines because they were all due at different times overnight.
Saturday, March 21, 2020
You slept the whole way through the night. I woke you up for your medicine, and then you went right back to sleep. We got up at 6:30. You were very stiff from lying in bed all night. I called the on-call doctor again to refill your Valium prescription, as your last dose was at 8:30 A.M. You alternated again on Saturday between walking around downstairs and resting in the recliner. I went to Walgreen’s to pick up the Valium prescription. You slept from about noon to 2:30 in the recliner. You woke up in a lot of pain. Fortunately, it was time for some of your medicines. You continued to be in pain in the afternoon, especially in your shoulders. We called the on-call doctor, and she said that pain was to be expected because they peeled back the shoulder muscles to expose the spine during the surgery. Your left index finger was also feeling numb. The doctor said that should correct itself in a few weeks. Around 8:00, we went upstairs to give you a shower and wash your hair. After that, it was time to get ready for bed. The medication for your system to get you go to the bathroom started to work, so you were in and out of the bathroom most of the night. I set my alarm for 10:30, 11:30, 12:30, 1:30, 3:30, 4:30, 5:30, and 6:30 to give you your medicines. You didn’t sleep quite as well this evening. You were up and in the bathroom quite a bit.
Sunday, March 22, 2020
You were awake around 6:30 A.M., and were hungry for pancakes. You wanted restaurant pancakes, so we called the local family restaurant and they were open for carry out! We ordered an order of regular pancakes, and order of chocolate chip pancakes, and home fries. I picked them up shortly after 7:00 A.M. When I got back, you ate some of the pancakes and home fries. We called the on-call doctor this morning about your shoulder pain. She was familiar with your case, and she changed the dosage on your Valium to try to relieve the pain of the muscle spasms. She said that these are normal in recovery. You face timed a few friends this morning, which helped to take your mind off the pain. You even walked around for part of the time that you were face timing. You napped for a little while in the afternoon. You were sleeping soundly, but unfortunately, I had to wake you up for medicine. We are trying to keep ahead of the pain. Late in the afternoon, you face timed some other friends.
Monday, March 23, 2020
We were awake around 6:30, so that you could head downstairs and get settled before dad left for work. You had 1/4 of a donut for breakfast. You were in a lot of pain because you slid out of bed during the night. I called the on-call doctor because you were almost out of valium, and she said that she felt we should wait and see how you were in the afternoon and re-evaluate then. You were concerned about your shoulders and rib. You were very uncomfortable. We gave you your medicine throughout the day. When you were face timing friends, you felt fine. When you were not on face time, you were in a lot of pain. In the evening, we tried to have you eat a chicken sub from Smith’s and chicken tenders and fries from Friendly’s. You ended up eating a McFlurry, and it really upset your stomach. I talked to your surgeon in the evening, and he adjusted dosages and changed a few of your medications. He wanted to avoid having medication in the middle of the night. It worked, and we were all able to sleep for 8 hours! You woke up in extreme pain, though, probably from being still all night and not having any doses of medication through the night. We hoped that you would adjust to this new medicine schedule.
Tuesday, March 24, 2020
Today was another challenging day for you. You were still in a lot of pain. You slept through the night, but you were very uncomfortable all morning, trying to feel better once the pain medication started to work. You spent the day alternating between face timing friends while walking around the downstairs and resting in the recliner. You still do not have much of an appetite. You tried to eat French fries, but they made you nauseous. You also tried to eat a McFlurry, which tasted good while you were eating it, but made you sick until late in the evening. You finally managed to fall asleep around 11 PM, and you slept until 6 AM.
Wednesday, March 25, 2020
You said that this was the worst day ever, but I thought things were starting to look better. You woke up at 6 AM and you seemed to have an easier time making it down the stairs in the morning. You also were less upset when you got downstairs than you were on Monday from the pain. You ate 1/4 of a donut for breakfast and some popcorn. You rested on and off throughout the morning, and then walked around in the afternoon on face time with friends. You felt really nauseous today, all day. You had to cut one of the calls short because you were in pain and nauseous. The nausea continued throughout the evening. You ate a few bites of dinner and headed off to bed by 8:30. You were asleep by 9:30 and slept straight through the night until 6 AM, other than waking up briefly for medicine at midnight. This was also the first day with no Dilaudid!
Thursday, March 26, 2020
Today you woke up feeling incredibly nauseous, and the feeling lasted throughout the morning. You napped for about 75 minutes around 8 AM, and then you were walking around downstairs face timing. We consulted Dr. Jain, and he suggested that we reduce the Valium because that could be contributing to the nausea. You napped three times during the day: once in the morning, once in the afternoon, and once in the evening. You decided to stop taking the Valium, because you didn’t want to deal with the nausea. You slept through the night, other than waking up briefly at midnight to take your Tylenol. It was the best day we have had since your surgery.
Friday, March 27, 2020
You had a good night’s sleep, and you were a little stiff and sore, as usual when you woke up. You made it downstairs (it was a little easier than yesterday), and you were disappointed that all of the family restaurants are now closed, and you were hungry for a pancake. Grandma delivered pancakes from McDonald’s for you, and you ate one. You napped in the morning and again in the afternoon. Between naps, you face timed your friends. You ate some popcorn and some chocolate in the evening. You decided that tomorrow may be the day that you eat real food again. In the evening, you walked around downstairs and face timed your friends.
I really appreciate all of the support from my friends and family. I’m getting stronger every day, and look forward to see how I progress in the coming weeks. Throughout this entire process, I was on OxyContin, Ketamine, Dilaudid, and Valium; by Thursday, I was off all narcotics. This was a huge step in my recovery process.