Early Morning Surgeon and Physical Therapist Visits
Waking up early in the morning is never fun. It’s downright disconcerting to wake up and not know where you are for a few minutes. The smell of burnt toast mixed with stale urine and antiseptic permeated the air. At 6 AM my neurosurgeon Dr. Swearingen woke me up. It was the day after my surgery when he had removed a brain tumor from my head, I actually didn’t mind any of those factors. I didn’t even mind that I fell back asleep after he left and three hours later the physical therapist woke me up.
I know that sounds odd, but waking up meant I was alive, and being in the hospital meant I’d had my surgery, I wasn’t a vegetable, and the tumor was gone! So bring on the assault on the senses, the sleepless night, the post-op pain.
Dr. Swearingen had me look at an eye chart and he quizzed me off of it, just like the nurses had been doing all night.
Help! An Influx of Steroids!
“You will be getting intravenous steroids your first two days in the hospital and then we will transition you to Prednisone pills,” he explained to me. “We’ll put you on what’s called a Prednisone Taper, where we’ll start you on a large dose, then we’ll start to taper you down to lower doses that you’ll leave the hospital on.”
“Wait, I have to go home on steroids!” I interrupted anxiously. I knew that steroids made me incredibly moody, agitated, and puffy looking, especially in my face.
“Once you leave the hospital Dr. Titros will be in charge of tapering you down to even lower doses until you reach a maintenance dose.”
“Maintenance dose? So I need to stay on it the rest of my life?” I was wishing my mom was there with me so bad at that moment.
Morning Meds
“This whole time we’ll be following your cortisol levels really closely. Eventually, the goal is to get you completely off of Prednisone but that’s not always possible for everyone. We’ll just have to wait and see how you do.” Dr. Tritos explained.
When the nurse came in to give me my morning meds she had the IV dexamethasone which was the steroid Dr. Swearingen had told me about, just in IV form. She also gave me; IV Zofran for nausea, IV Dilaudid for pain, IV desmopressin for my diabetes insipidus, and a whole bunch of my usual pills.
She also gave me a shot in the stomach of Heparin to prevent blood clots which could be deadly.
Heparin Shots
From past experience, I already knew that I would get that shot three times a day the whole time I was in the hospital and that it would blossom into large blossoming bruises all over my stomach. However, I knew the Heparin was important because for the last few years I’d been going to a support group for teens and young adults with chronic, life-threatening health issues. One of my friends in the group had been in a nursing home for rehab due to a broken ankle requiring major surgery. She had been refusing the Heparin and had almost died due to a massive pulmonary embolism (large blood clot in the lung) as a result!
Beginning Work With the Occupational and Physical Therapist
The Occupational therapist and physical therapist started working with me, the morning after the surgery. I hadn’t realized how strenuous both would be. Until the surgery, I had a lot of fatigue, weakness, dizziness, and lack of sensation in my feet for unknown reasons, but I’d been mostly able to walk. I’d been able to stand, pivot, and transfer from the bed to a nearby chair or wheelchair completely independently as well.
When the physical therapist came in with a walker on the morning after my surgery, I didn’t think I’d need it but didn’t want to embarrass her either, so I thought I would just show her with my body that I didn’t need it. I would just stand up carefully (because I was really dizzy), wait a few minutes to get my bearings and then walk a few steps with the walker and she would see I didn’t need it and we would go for a stroll down the hall with just the IV pole in tow.
Working With My Physical Therapist Was Not as Easy as I Thought
Now, I had this all planned out in my head, but when Dani, the physical therapist got to my bedside she warned me that this might be harder than I was imagining.
“You just had very major surgery on an area that is the control center for the rest of your body,” Dani warned me. “Being on your feet is going to feel different. Plus Dr. Tritos has told me that you suffer from an unknown form of dysautonomia and that the surgery seems to have flared it up.”
“Does this happen to many people who undergo this surgery?” My mom asked. She had come back from the hotel around 8:00 AM.
“Well, no,” Dani, who was the head physical therapist on Lunder 7, answered. Most people who have this type of surgery don’t also have a strange form of dysautonomia, Becca is a new breed for all doctors.”
Stuck in a Dysautonomia Flare
‘How do you know her dysautonomia flared up?” my mom asked.
“Her heart rate has been in the 140s all day and her systolic blood pressure (the top number on the blood pressure reading) has been in the mid-80s. Her diastolic blood pressure, the bottom number has only been in the lower 50s.” She explained to my mom.
Dani turned back to me, “So I want you to take it easy and go slow. If you feel weak you need to let me know immediately and we’ll sit you back down.”
My mom looked concerned.
I just nodded. How hard could this be?
My Physical Therapist and The First Attempt to Get Out of Bed
Dani sat the head of the bed all the way up and put the feet all the way down.
“Can you swing your legs over to the side of the bed?” she asked me.
I tried to swing them over, but they felt like they were dead weight. They didn’t want to budge. I tried again. The muscles in the back of my knees and thighs burned like they’d just had a major workout, but my legs still didn’t move. When I unsuccessfully tried a third time Dani and my mom exchanged some sort of look, but I only caught the tail end of it, so I don’t know what type of look it was.
Being Stubborn with My Physical Therapist
“Do you want some help?” Dani asked me.
“No,” I grunted. When it came down to stuff like this, I didn’t like to give up.
Reaching down with my arms, I physically scooped up my legs and deposited them over the edge of the bed by doing a little butt scooch and wiggle maneuver to get myself in the right position. By the time I was sitting with my legs hanging over the edge of the bed, hospital sock-clad feet firmly on the floor, arms on either side of me, my heart was racing faster than NASCAR, my breathing was so heavy I could barely hear anything over it, and my body was shaking from the sheer exertion.
My Physical Therapist Found Completely Dysregulated Vital Signs
“I’m just going to quickly take your blood pressure, heart rate, and oxygen level before we go on,” Dani explained to me. Somehow pulling out from thin air, a blood pressure machine. My blood pressure was actually normal for once. Probably a result of all that exertion, but my heart rate was 172 and my oxygen saturation was only 89%.
“We’re just going to sit here for a few minutes and wait for these levels to even out a little,” Dani told us. It took almost twenty minutes to get my heart rate back into the 140s and my oxygen level above 95%. At any other hospital, the physical therapist would have left and not come back for hours, but there’s a reason Mass General is one of the top hospitals in the country.
Standing Up Inside a Kaleidoscope
Once I was back in my own range Dani said I was okay to try to stand up and take a few steps. By this point, I had definitely discovered that I wasn’t at my normal level of functioning and that I was going to need the help that was being offered to me.
Dani wrapped a cloth belt around my waist, sat the walker in front of me and she helped pull me up to a standing position by grabbing me by the belt and lifting and simultaneously leaning me into the walker. The room tilted and swirled around me. I wildly grasped around in a broken kaleidoscope moment, made contact with the walker and then grabbed a death grip of it while Dani was holding still with her hip and her knee and her leg.
The First Steps
“Breath,” Dani instructed.
I drew in a few shaky breaths.
“You’re doing awesome,” my mom told me. The negative part of me was already saying, ‘yeah, doing great, I’m being held in a standing position by a walker that is being held in place for me. Eleven years ago I was doing backflips on a balance beam, and now this?’
“Do you want to try a couple of steps?” Dani asked me.
I answered that I did, I never back down against a challenge, but inside I was scared.
Dani slowly inched the walker forward and I moved my legs forward, it felt like I was falling, I had to move the other leg forward as quickly as possible to avoid actually face-planting the hard hospital floor. Dani actually had a grip on the belt still, but it sure felt like I was going to wipe out.
Vital Signs Going Back Down the Toilet
We tried a few more times. I walked across the whole room and back like that, but then when Dani rechecked my vitals they were worse than ever so she got me back in bed and paged the nurse who put oxygen on me to bring my oxygen levels up. Then the nurse called Dr. Swearingen for an order for medication through the IV to bring my heart rate down.
“Is this normal for this surgery?” my mom asked the nurse and Dani as they were both in there working on me.
“The difficulty walking is sort of normal, the vertigo is normal, the rapid heart rate and low oxygen level are not normal. They’re symptoms of that dysautonomia that she has going on, which, like I said before, is somehow being triggered by the surgery and the stress on her body. As a physical therapist, I will have to go easier on her and the occupational therapist will have to do the same.”
The Road of Recovery Ahead
“But won’t that slow her progress?” my mom asked. I had just been wondering the same thing as thoughts of nursing school and needing to be able to be in good enough shape to do clinical, flashed through my head.
” She will require intensive follow-up. Months of it. She’ll probably be reliant on a wheelchair or a walker for a long time during her follow-up, but she’s a tough cookie, she’ll probably pull you through it.” Dani told my mom, giving me a smile.
At the end of my second night at the hospital, they removed the packing from my nose. It was really distressing to me that even without the packing I still couldn’t breathe through my nose. The nurse showed me how to use both nose sprays to help with the stuffiness, but neither helped enough.
The Worst Stuffy Nose in History
They assured me that in time it would take care of itself, but I was so uncomfortable that I actually felt on edge. It was so tempting to just grab a kleenex and just give it a good blow. At one point I think the nurse might have read my mind or something because she called me out of a haze of thinking how great it would feel.
“Whatever you do, don’t try to blow your nose yet, you could blow the fat plug in your brain loose and have a really bad bleed.”
Suddenly the thoughts of a good nose blow weren’t as tempting.
Forming Discharge Plans
Dani or Erica, the other physical therapist on the neurosurgery floor, came twice a day every day until they got me comfortable walking across my hospital room with my walker and doing a set of four stairs. It was decided that for the first few months or so of being home I would sleep on the pull-out couch in the living room until I got strong enough to do the stairs up to the bedroom at home.
The occupational therapist came once a day, every day, while I was in the hospital. They gave me sponges and putty to squeeze to strengthen my grip, they helped me re-learn how to get dressed and showered despite the increase in weakness, dizziness, shakiness, and fatigue. Jada handed me a whole pamphlet of arm strengthening exercises with 16-ounce water bottles instead of weights.
Time for a Tea Party
One day the occupational therapist came in, put my walker in front of my bed, and told me we were going to go make tea. They explained it was a way to make sure I was safe in the kitchen, but I didn’t care if there was an ulterior motive, even with the desmopressin (that by now I had started taking as a nose spray) I was thirsty all the time from my diabetes insipidus.
Discharge Day
Finally, after five days in the hospital, they decided that I could go home. Dani, gave me a walker and a small transport chair (that would easily go in and out of the trunk of my mom’s small car, that I could keep, but my mom pushed me out in a hospital wheelchair so we could pile all of my bags on its IV pole. I could get around short distances with the walker, but I would still need the wheelchair a lot of the time, unfortunately, and that murdered my self-esteem. My once muscular gymnast, rock climbing body was gone. It was now a lump in a wheelchair.
