The best laid plans…
I sort of shuffle from one unexpected health crisis to the next. I’ve had so many things happen with no warning in the last few years that it’s essentially impossible to get me excited. I’ve woken up only to throw up twenty times a day, every day for three months until I had a feeding tube placed. I’ve found my shirt and sheets stained with blood in the middle of the night. Fevers, well, I’m quite used to the low-grade, long-and-slow push of an autonomic fever that stems from my body’s inability to maintain stability in its temperature, heart rate, blood pressure, digestion, and bladder–all that unconscious stuff. But on the 23rd of September, I had a 12-hour fever from hell. It only hit about 102, but the pain was horrific and toward the end, I was having trouble breathing. I called home health in the wee hours and was told to give it another half hour and to call 911 if it didn’t come down. An hour later, it was down to 101, and I crashed for the night.
It immediately made me think of last winter. Five times in seven weeks, I had bad fevers, just like that one, except higher, up to 104. The pain was horrific and I would get confused, even delirious at one point. Since I have a central line, sepsis is a massive concern, but two sets of blood cultures (four bottles each) only resulted in one bottle growing bacteria. The attending started IV antibiotics, but four days later, the infectious disease doctor stopped them, saying that I was not infected in any way. Oddly, the fevers stopped….
Until last week.
A second one hit on the 30th. I was supposed to leave the 31st to travel 12 hours via car to Atlanta to see a super-specialist in hopes of getting some majorly-needed direction on some persistent and critical issues… with any illness or prolonged fatigue, I keep going through periods of what appears to be a metabolic crisis, resulting in daily blood sugars of 300 and 400 and even higher. This is not okay. My local doctors are stumped, and we’re counting on the specialist to have a broad enough view to figure this out. But, of course, Monday night into Tuesday morning, the fever struck. Home health was set to come the next day to draw labs, including cultures, but the problem was that they would not be back in time to have a firm answer as to whether I was okay to go on to Atlanta. I talked to my PCP at 5 AM and we agreed that 911 was my best option to get labs done quickly and have a sense of peace on my trip.
This is me as I waited for the ambulance. A little flushed, but you would have no idea what my body was fighting… in fact, the fact that I ALWAYS “look good!” can mean that doctors don’t realize how sick I am.
In the ambulance, I knew. In the same second I saw my vitals… heart rate going over 160, blood pressure 80/40, temp 103.5, and O2 saturation right around 90. I was having trouble breathing, and my arm kept falling off the stretcher but I couldn’t get it together to pick it back up. The paramedic in the back with me picked it up every time. I knew.
So, this was when I was hanging out at the local hospital ER waiting on labs:
That is not a face I make.
The local hospital wasn’t up for all the tricks my body likes to play, so I was taken to a bigger hospital downtown. It’s the first time I’d been there, and I was really scared of having new doctors take over my care, especially as sick was I was. I still don’t have an official mito diagnosis, and it was clear that I would not be making it to Atlanta. I was on the PCU, or Progressive Care Unit, also known as “step down” from ICU. I had the best care I have ever had.
My port made it known that it was obviously infected:
I had emergency surgery that night to have it removed. Well, first, the big freak out was that I had absolutely no access. It was impossible to place an IV. That is why I had a port in the first place, even though doctors have tried to tell me I “didn’t need it” and that I was young, so I “must have good veins!” I. do. not. have. access. They were discussing a femoral (groin) or IJ (jugular, in the side of my neck) line but opted to place a PICC (like a super-hefty IV placed into the upper arm that has lines that go to the vein above the heart) in hopes that I did not have a particularly nasty bacteria that would require that PICC to be removed and another one placed for long-term antibiotics. Central lines, like ports and PICCs, cannot be limitless over a lifetime, so it’s not a good idea to use them unless absolutely necessary. Every point of access used today is one that cannot be used in the future.
My port grew gram positive cocci in clusters (surprise–the same bacteria that one bottle grew last winter), and then the peripheral cultures (taken from my wrist and arm) also grew. I was septic. I was having extreme pain when I breathed in and had to stay completely upright. It turned out that I did have the aggressive bug (staph aureus). It had grown in clots on my heart which got thrown into both lungs, and the bottom of the left one had collapsed. I’m not sure why it took three days of on-and-off screaming to make that determination, but staying on oxygen really helped with the comfort level. I’m a tough cookie when it comes to pain, as it’s sort of a never-ending thing, so if I’m ballistic and screaming with every exhale for three hours, um, I’d appreciate a little pain control. But my dang blood pressure was really low a lot of the time and so they were afraid to give me a lot of pain meds. That was rough.
One thing I was extremely glad I did was have photo proof of some of my body’s quirks. Like, when I say, “Dude, don’t come near me with that tape,” I tend to get blown off. With a PICC line, you have to have a sterile dressing over it at all times, or you risk an infection just like the one I’m fighting. Every single adhesive except one very strange one causes… well, much like this. And those blisters burst, and that is a really huge infection risk. Fighting doctors about tape reactions was not a thing I was up for doing, so I whipped out the photos I have documenting my reaction to every freaking tape under the sun, and, voila, “No tape on skin!” went on my board right off the bat.
Even in the worst of it all, I remember that quirk and laughter only stops when I choose to leave it at the door and that, if I’m grumpy and miserable, I’m the one suffering the most. So, I choose to bring my humor along with the spare Diet Mountain Dews in my suitcase. I have to use many of my own supplies while inpatient, because I’m so sensitive and my body is so particular that I can often only tolerate one product. I have to pack a medical suitcase to go to the hospital. Long story short, I had to use my own feeding pump and tube feeds… but I didn’t have clamp to attach my pump to the IV pole, since I usually use a backpack. Dragging my backpack AND a pole got old really fast, so I sort of jimmied the pump up on the pole using a box of hospital tissues, medical tape, and a cut piece of tubing. I was seriously proud.
On Friday, I got my second PICC, which, unfortunately, had to go into my right arm. This is the line I’m stuck with for six weeks, attached to IV antibiotics round the clock.
When they got my skin-safe dressing on, I looked at it and proclaimed, “it’s like the little black dress of line dressings… hugs all the right curves and just a little bit see-through!”
I’m also hooked up to continuous IV saline and my tube feeds and their hourly-flush. If you’ve lost tracked, that makes a 2-liter bag of saline, 325 mL of antibiotics, 600 mL of tube feeds, 500 mL of potassium-infused flush, three pumps, and an extra charger, all in my backpack.
“Don’t lift more than ten pounds with your PICC line, except, here, take this!” Uhhh huh. It’s not ten pounds, trust me. Closer to 30.
Also, I want to know—who’s this Rapunzel chick and why does she think she has dibs on being tangled? All she has to worry about is having her hair pulled. I have six lines to manage, plus two chargers to unplug and realign and re-plug every few hours when I get up in the dark to go pee at night, and I have to worry about pulling my line or my tube out. Hand over the crown, Rapunzel. I’m the real princess.
Strangers probably look at me and see a medical onslaught, and people who don’t know me well probably look at what they think they can see of my life and think it’s sad and small. If you think my world is sad, I think your perspective is much sadder. Some think that to really live is to go to parties and getting the next big promotion and getting a fancy new car… I don’t know anything about any of that. What I do know is the joy of coming home to a kitty who has missed her mama for five days, and the overflowing heart of making it back to the autism center to find people who were waiting until I got there just so they could see me after a few weeks away, and the support of a family and greater community who go so far beyond tolerance or even acceptance to outright celebration of quirky me, and… and this… this little guy catching sight of his aunt, and getting to show him the sensory room and the train table… and laughing with my big sister while we (totally uncharacteristically) stuffed his face with raisin cookie…
This is life, abundantly. It comes from the combination that is the peace and joy and hope and faith and trust and love of God in me. In other words, it’s not anything that depends on the out-there of it all, on the circumstances. It’s everything to do with the One who is within. He goes everywhere I go, and that’s why his promise is true… because with him in my heart, there is no way to have a life outside of abundance, no matter how strong the storms around me.
“I came that they may have life, and have it abundantly” (John 10:10).
Note: I’m still pushing through school as planned. I have less than a month to go to finish, and I plan to keep going and to maintain my 4.00! My professors and advisor have been awesome. I did have to reschedule Atlanta for December, and I missed a big reception for a state art contest my stitching won, but I do plan to make it to OCALICON and speak! I’m beyond grateful for the support… logistical, financial, emotional, and everything else imaginable… of my family and community to keep me afloat until I’m totally back in business, which is closer by the day. I know I’m behind on my usual advocacy stuff; if you’ve messaged me or emailed me, please know that I’m only just out of the major scary woods and still only awake maybe eight hours a day. Medical care is my number one goal, then school, and third will be getting some work hours added back in (from home at first). I know there are a lot of exciting new projects and publications and movements and things going on, and I’m cheering you all on but cannot commit to participating like I normally would. It won’t be long, so please hold me a spot and I’ll be back to spreading quirk-dom and writing for anyone who will have me very soon :-)