Complex Care Team Ordering My First PICC Line
These days, getting a PICC line doesn’t really phase me anymore, but back in the summer of 2014 when the Complex Care Team at Massachusetts General scheduled me to get my first ever PICC line, I was a ball of nerves. I had been at Mass General Hospital for two weeks plus some change, but still couldn’t keep even a few sips of water down. The severe gastroparesis that I had been battling since age eight wouldn’t allow that.
Why Does the Complex Care Team Think I Need a PICC Line
My small intestine was affected too. So I also wasn’t able to get enough water through my NJ tube either. I couldn’t even tolerate a high enough feed rate without adding in a 30 ml water bolus. How in the world would they be able to add in another 30 ml every hour.
My doctors from the Complex Care team (special doctors that follow complicated patients with rare and severe diseases every time they’re admitted to the hospital. They are the same two or three doctors every time I am admitted. Dr. Thomas, Patricia, and occasionally Tanya are my hospitalists no matter what floor I’m admitted to and no matter when I’m admitted.) decided that I needed a PICC line to get IV fluids with electrolytes and vitamins and sugar to hydrate me and make up for what I was missing via NJ tube and orally. It would be more permanent than a regular IV, it could stay in for up to six months.
The Insertion of the PICC Line
A special nurse came into my room to insert the PICC line. It took about an hour and a half to properly thread the needle into my vein and push the line into the vena cava in my chest. The initial sticks of the lidocaine getting injected into my arm burned like fire, and she had to numb me four separate times because the lidocaine didn’t work very well for me.
I was happy once the line was in because it made the continuous potassium, that kept my electrolytes stable and had burned so bad in my constantly blowing peripheral veins, not burn at all when it was infusing into one of the lumens of the PICC line. My medications no longer burned, either — what a relief.
Why Playing Cards Can Be Hazardous To Your Health
The day before my skin biopsy was scheduled, I was playing cards with my mom. All of a sudden, I felt like my heart had skipped a beat and hiccuped into my neck. As soon as I got that feeling, my heart monitor began frantically dinging, and there was the sound of running footsteps followed seconds later by my nurse running into the room.
The nurse was followed by several other nurses who flattened my bed out and kept saying, “she’s in V-tach; she’s in V-tach.”
As my room filled up, a deep blackness sucked me under it. Moments later, the sensation had gone away, and I opened my eyes to a room full of medical personnel. I had EKG stickers all over me, extra IV bags hanging, medication wrappers all over the floor, a giant bandage on my wrist, and my pediatric hospital gown with the blue and purple stars, had been hastily shoved over to the side.
The Complex Care Team Never Warned Me Not to Play Cards!
“You went into a potentially fatal heart rhythm.” My regular nurse explained to me.
“We almost had to call a code blue on you.”
“Am I okay now?” I asked.
“Everything seems ok now, but you gave everyone quite the scare.” She said.
As the room slowly emptied, my mom asked me if I just wanted to rest.
“No, I want to play cards,” I told her, trying not to think about how close to death I’d been.
My mom redealt the cards, and we began playing again. We’d only been playing for about five minutes when I felt my heart race, skip a beat, race, and then jump up into my throat again. Once again, the weird cardiac symptoms preceded frantic dinging and running footsteps. Darkness washed over me again, and then when I woke up, the room was once again full of nurses and techs, and doctors.
Call The Complex Care Team…Stat!
“What are you doing?” the nurse asked us.
“We’re just playing cards, but Becca’s heart doesn’t seem to like it,” my mom forced a chuckle and then squeezed my hand.
“We’ve paged the Complex Care Team,” one of the residents told us. “You were in V-tach again.”
“Maybe we shouldn’t play cards anymore,” my mom suggested.
“I need to be distracted,” I explained to my mom, even though I felt shaky, dizzy, and exhausted.
My mom had just redealt the cards when the situation repeated itself a third time.
This time I felt like I was falling through bumpy darkness. At one point, I heard through the dark fog, someone yelling that I was in V-tach again and then said I was in V-fib and to call a code blue and the Complex Care Team
Somewhere Between Life and Death
For the longest time, I just continually fell through the bumpy darkness. I lifted my arms to pull myself out of the darkness, but my hands wouldn’t lift. They felt heavy and wouldn’t budge. At another point, I heard someone calling my name, but I couldn’t work out if I recognized the voice or not. I kept trying to swim back to the top of the darkness to pull myself out, but then everything would go completely dark again.
The next time I went into awareness, I tried to open my eyes, but they were too thick and heavy. I tried to call out, but I couldn’t.
Waking Up In the ICU
When I was finally able to open my eyes, I didn’t recognize where I was. I was in a larger room with a glass wall. On the other side of the glass wall and glass sliding doors was a hopping nurses’ station. I realized the reason I hadn’t been able to lift my arms was that they were strapped down to the bed. There was an obtrusive tube in my mouth, which was why I hadn’t been able to call out.
Feelings of panic streaked through me.
I had another one of those triple lumen central lines in my left shoulder, more bags, and pumps than I had ever seen in one place consumed the IV poles near my bed. Medical equipment filled the whole room.
“Can you hear me, Becca?” my mom suddenly leaned into my view. She put her hand in one of my strapped-down hands and smiled at me. ‘Squeeze my hand if you can hear me.” It took all of the focus I could muster, but I was able to order my sluggish-fogged-over-brain to make me squeeze the hand my mom was holding.
I Lost Five Days of My Life
“You went into that potentially lethal heart rhythm three times over the course of an hour last week. They had to call a code blue on you after the third time because you went into a fatal heart rhythm and your body started shutting down.”
My mom saw my eyes bulge open with fear and surprise.
“Now you’re in the medical ICU. It’s Thursday. You’ve been unconscious on life support for the last five days,” my mom explained to me. “I’m calling the nurse to let her know that you’re awake.”
Less than a minute later, a middle-aged woman with her hair cut in a short gray bob entered the room.
Sleeping Beauty Woke Up, Paging Complex Care Team
“Hi Becca, I’m Michelle I’ve been your day nurse for the last three day shifts. It’s so nice to see you finally awake. You gave everyone quite the scare. Do you remember anything?”
I nodded.
“I’m going to page The Complex Care Team and let them know you’re awake. We have you on medication to control your heart rhythms. Hopefully, soon we can take that breathing tube out of you so you can talk. In the meantime, you can use this.” Michelle handed me a whiteboard with an erasable marker.
I took the marker and messily wrote ‘thank you” on the board with my right hand that was tied to the bed. The nurse explained that the restraints were just a precaution for all patients on ventilators, in case we got confused from all the sedation being pumped in, or had a bad dream and grabbed at it and pulled it out. They didn’t want us to accidentally kill ourselves.
It made sense to me, as much of an annoyance it was.
I wrote back, “Okay”.
Getting an Explanation From the Complex Care Team and Taking a Propofol Nap
Dr. Thomas the attending of the Complex Care Team explained to me that my body was working so hard to stay functioning that it had kind of gone into system overload. They were going to have to make some treatment adjustments to take some stress off my fragile body.
“Now that we know that your brain is functioning okay after all of that, would you like to be sedated until the breathing tube comes out?” he asked me.
I immediately wrote “yes” on the whiteboard. Several minutes later the nurse came in with a little IV bag of white liquid that kind of looked like milk. She called it Propofol. As soon as the drops started flowing I was knocked out,
When they removed the breathing tube and stopped the sedation a day and a half later my throat felt like it had been attacked from the inside. It was even sorer than when I’d had the breathing tubes for surgeries. Just like then, it tasted like antiseptic.
Joking Around With My Mom Post-Crisis
“You sure don’t like losing at cards,” my mom joked with me when the tube was out. “I’ve never heard of a worse sore loser. I mean come on, trying to die to get out of losing a game of cards!
I laughed even though it hurt a little to do so.
“Hey, I was winning,” I joked back.
“Oh, I don’t know about that,” my mom countered in a teasing tone.
“Well the last thing I want to do is declare a rematch. I don’t want to play cards again for a while!” We were both laughing now. If you don’t laugh you cry.
Further Explanation From Complex Care
Dr. Thomas and the rest of the Complex Care Team explained a little more to us about what had happened. My body wasn’t able to regulate my heart rhythms or rate, because, with the dysautonomia, my whole unconscious nervous system screwed up.
They were going to have to figure out my underlying diagnosis to solve the whole issue or at least get a better picture of what we were dealing with, but in the meantime would do damage control and play with medications for my heart rate and rhythm as well as figuring out the correct types of IV fluid I needed, and how much.
The ICU was my home for the next week.
Getting the Skin Punch Biopsy the Complex Care Team Ordered.
While I was in the ICU, one of Dr. Oaklanders’ colleagues from the nerve injury unit stopped by to do the skin punch biopsy.
The doctor cleaned my skin as you would before surgery and used a special tool they place on the outside of my lower left leg, to punch out a small area of skin. They numbed me first, so it didn’t hurt until hours later, I was a little sore. Luckily it wasn’t a procedure that required stitches.
“The test results will be in, in about three to four weeks.” The doctor told me.
After being transferred back to the intermediate care floor, physical therapy came in to see me. For a week, Sarah, the PT, came every day and would get me up to a seated position on the side of the bed and take my vitals.
While I was lying down, my heart rate was still rapid but not as bad as it had been, and my blood pressure was on the low side of normal. Once I got to the edge of the bed, I was so dizzy I needed someone to hold me upright physically. When I was sitting on the edge of the bed, my heart rate went up to the 180s, and my blood pressure dropped dangerously low.
Getting Frustrated With My Uncooperative Body
Eventually, Sarah would have no choice but to lay me back in bed and try again. These sessions would last about half an hour, but I was never able to stay sitting up, let alone try to stand or walk. It was so frustrating after working my butt off in PT two years earlier to get to a point where I could walk with no assistive devices.
“I know this is disheartening, we’re trying to figure this out,” Patricia from the Complex Care Team told me when I asked her if I was ever going to be normal again or at least able to sit and stand independently.
A New Medication Suggestion from The Complex Care Team
After a week with no progress, The Complex Care Team came into my room and told me that we were going to try a new medicine.
“It’s called Fludrocortisone. It’s a steroid that we use to treat dysautonomia. We’re going to add it to the metoprolol and midodrine so that you can hopefully at least be able to sit up on your own again.” Dr. Thomas explained. “We’re also going to give you three liters of IV fluid a day instead of two.”
‘I’m game,” I told them desperate to be able to get out of bed again.
Over the next several weeks, I took the adjusted treatments and worked my butt off in physical therapy. Eventually, they got me to the point where I could sit on my own and even stand and pivot to transfer into the wheelchair.
Riding my Wheelchair Around the Whole Hospital
With the encouragement of the doctors, PT, and nurses, I would go for rides around the hospital in the wheelchair every day. My mom and dad would alternate in taking me for the rides on the days they were there, and my second cousins, who lived in Boston about half an hour from the hospital, would take me on days my parents weren’t there. By then, it was September and still warm out, but I would still take a blanket with me for the chills I experienced due to my inability to regulate my body temperature and my low body weight.
Another Family Meeting with The Complex Care Team and the Rest of the Treatment Providers
At the end of September, we had another family meeting with the whole care team at the hospital. Everyone was there, the Complex Care Team, the specialists, a nurse, Sarah (the Physical Therapist), the case manager, the social worker, and my parents.
Dr. Thomas spoke first.
“Becca is making improvements despite the ICU visit. I think we can pull the triple lumen catheter and stick with the PICC line as far as IV access goes. It’s a way to cut down on that ever-present infection risk,”
“Well that sounds like progress,” my mom said.
Everyone around my room nodded.
“Becca also has gotten up to a rate of 40 ml an hour on the NJ feeds. She’s not totally where we would like her to be, but she simply can’t tolerate a higher rate without refluxing the tube feed back up into her stomach, vomiting, getting super nauseous, or having extreme diarrhea. However, she’s handling enough that we would like to put in a GJ tube instead of the NJ and see how she does.” Dr. Thomas told us.
My Dad Fighting Back Against the Complex Care Team’s Treatment Plan
“I don’t want her to get a permanent feeding tube.” My dad said. “It’s bad enough that she has the nasal one. I don’t want you to put a surgical hole in her. We’d rather have her get up to goal rate on the nasal feeding tube, have her gain some weight and then go home to learn to manage to take in nutrition orally.”
“We don’t think she’ll ever be able to take in nutrition orally again,” Patricia tried to explain to him. “If she has the small fiber autonomic polyneuropathy that we think she has, she will need long-term treatment.”
“How common is the small fiber autonomic polyneuropathy thing?” my dad asked.
“The form we think she has is really rare.” Dr. Thomas answered.
“If it’s that rare, then she doesn’t have it,” my dad fumed.
“Well, the results of the skin biopsy will be in soon, and we’ll know for sure.” Said Dr. Thomas.
Denial Pushing My Dad Into Insisting I Have a Conversion Disorder
“She has a conversion disorder. They already told us that. She’s having physical symptoms because of her psychological pain.” My dad insisted.
“With the findings, we have so far, we know that she has a medical disorder that can’t be faked or dreamed up due to stress,” Patricia told him. “You can’t fake the high heart rate she’s been experiencing.”
“Stress always makes my heart race,” my dad insisted.
“Maybe so, but then her blood pressure would be high from the same stress, and she has one of the lowest blood pressures I’ve ever seen in someone conscious. She also can’t mentally will her abnormal bloodwork, types of heart rhythm disturbances she frequently displays, a gastric emptying study, a sitzmark study, EEG results, low oxygen levels, or results of a small bowel follow-through. She couldn’t have somehow produced a brain tumor,” The Complex Care Team continued trying to explain.
“An NJ tube isn’t a permanent solution, and if she got a GJ tube, she’d be able to vent air and bile out of the G port of the tube. Venting may even allow her to take some drinks by mouth. It would improve her quality of life.” Dr. Kuo, the GI doctor added.
“That would be awesome,” I said.
The meeting argument lasted another half hour of back and forth between my dad and the doctors. Finally, I spoke up.
“This is my body and my life. I want the GJ tube so that I can feel better. Ultimately it’s my decision.”
“I don’t know if I can have you at our house if you have a GJ tube,” my dad mumbled, but then he was quiet.
“We feel that this is your best option,” Dr. Kuo agreed.
I was scheduled for the procedure the following week.
