After the SCIG fiasco mellowed out, and I was discharged from the hospital, things were going pretty well-- back down at a lower steroid dose, increasing my work hours, working on the two online classes that I'm currently enrolled in, I was home alone with the dog from few days without anything catastrophic going down, etc. As the week progressed, I wasn't feeling fantastic, but I initially assumed that it was from my steroid dose slowly decreasing. However, I get weekly bloodwork, and my white blood count doubled since discharge, which shouldn't happen when decreasing steroids unless there's an infection or inflammation brewing somewhere. My home health nurse and I separately called my doctor's office twice to ask them to check urine and blood cultures because of my weakened immune system and how many UTIs I have had this year. My doctor was out of town most of the week, but the covering provider and other staff assured us that cultures weren't necessary unless I was clearly symptomatic.
Last Friday morning, the 19th, I woke up feeling unwell, but I had a meeting scheduled, so I decided to go into work, and then was going to leave early once my meeting had concluded. On my way in, I called the doctor's office one last time, and told them that I didn't feel right, and thought that I should stress dose my steroids (add an additional dose to avoid a crisis), and that I thought cultures were needed at this point. They told me to not stress dose, and that they would call to "check in" on me in 3 hours.
Well, unfortunately, when they called back 3 hours later, I literally was in the OR being sedated to be intubated. I went into work, and went to my meeting, but my boss immediately noticed my facial droop (when my angioedema/swelling starts, it typically looks like the right half of my face is drooping, but it is actually because fluid fills in the bottom of my cheek), and that my voice was hoarse. At this point, I had already administered a few of my rescue medications, angioedema meds, epi pens, etc, but was continuing to progress. When she saw that nothing I was trying was working, she quickly put me in my wheelchair and took me running to the ER.
They called a Code Blue once I got there, which summons fellows (training docs) and attending physicians (in charge) from Critical Care Medicine, Anesthesiology, and Ear Nose and Throat, respiratory therapists, social work, as well as additional ER nurses and physicians. They tried all of the usual "tricks" that have allowed me to narrowly avoid intubation many times in the past-- an epinephrine (adrenaline) IV drip in addition to epi shots, continuous nebulized (inhaled) epinephrine and albuterol, high flow oxygen, which pushes large volumes of air into the nose to try to open up the airway, and heliox, a helium/oxygen combination with a similar mechanism-- all to no avail.
They were attempting combinations of all of these interventions for around 2 hours, and nothing brought full relief. Any positive response was temporary and partial. At this point, anesthesiology told me that it was a very realistic possibility that they were going to have to take me to the OR to intubate, which is when there is a tube placed into one's airway, and is connected to a ventilator, and takes over breathing for them-- life support. I have been given this warning many times before, but usually something starts helping.
Those two hours were awful. I was absolutely exhausted literally just trying to breathe, not even able to swallow my own spit at that point, unable to breathe through my nose or mouth from the swelling in my mouth and face. Initially, my blood gasses looked ok, but they quickly started to decline as my lactic acid shot up, so they decided it was time to run to the OR. They had already been prepping the OR given the urgency of the situation, so all of the surgeons and staff were present, which of course didn't particularly help an already petrifying situation, but I knew that it was necessary. There were at least 8-10 doctors in there from the different specialties that responded to the initial code. They told me that they would try to insert the tube through my nose first, which is under partial sedation, and if that failed, that they would go through my mouth, and if that failed, that they would have to put an incision in my throat to do a temporary tracheotomy.
They tried to get the nasal airway twice, but hit swelling both times, so they proceeded with full sedation. I was terrified that I was going to wake up with a trach. Thankfully, once I was fully sedated, they were able to use a small, flexible camera to place the breathing tube through my mouth, and put me on the ventilator.
From there, I was taken to the Pediatric ICU that I work in. I was on the ventilator for about 12 hours, and then remained sedated for an additional 12ish. I woke up Saturday, but I have little to no recollection of Saturday or Sunday other than wanting to try some chicken broth late Saturday (yes, I woke up hangry, which is pretty typical for me). Supposedly I stirred a bit during the time on the ventilator, but like I said, I have zero recollection (which is a good thing, I don't want to have any memory of it).
While I was sedated, they collected blood and urine cultures. Shocker-- my urine cultures were blatantly positive for a UTI, a different organism than I had before. This confirmed my home health nurse and I's suspicions, and in conjunction with a lower steroid dose, can explain the severity of the episode. They were able to ween me off the epinephrine drip, and move me out of the PICU to the step down hematology/oncology floor on Monday. IV antibiotics were started Wednesday. They also re-checked my igG, which is a key part of the immune system that has been low (why we had tried the SCIG). It has gone down further, which was expected, but with the infection in conjunction with the low igG levels and how dangerous infections are for me, they decided to restart IVIG inpatient. CHLA has a small supply of the brand that I can tolerate, so every night, they have been giving me a small amount to fit. Even with pre-medications, these infusions aren't fun-- my body still likes to throw a temper tantrum every step of the way, but at this point, its a necessary evil.
I am very thankful that I was in the right place in the right time, for my boss' response and willing ness to accommodate, my family, co workers, you name it. The staff and physicians here have been compassionate, respectful, and supportive. I asked if there was anything I could have done to avoid this, and other than administering the extra steroids that I was told not to administer, I did everything else "right."
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| Welcoming Shabbat and celebrating Grandma Shelley! |
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| James! |
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| Doggy carpet! |
Sending love from ALL of us! <3
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