Refeeding Syndrome

God’s ways are so much higher than my own; never in my wildest dreams could I have planned a more beautiful and rewarding day! Today (9/7) I was scheduled to orient to a new volunteer position at Akron Children’s Hospital in the Kay Jewelers Pavilion Outpatient Surgery but ironically my plans ended up being spontaneously interrupted by God’s supreme plans far exceeding my own. I arrived at the volunteer office several minutes early, only to find the person I was meeting had not yet arrived. Another volunteer informed me of the health fair that was taking place over in the Considine Building and happened to mention that they were giving free flu shots, which are required for all hospital volunteers and employees, so I promptly checked in, put my belongings in a locker and informed the volunteer office of where I was going so it wasn’t thought that I’d skipped my appointment. So, I started the long trek from the Locust building to the first floor of the Considine Building, noticing each familiar “landmark” with awe and greeting each passerby with an enthusiastic and genuinely excited smile. Yes, there was a certain “spring” to my step as I recalled why I love this place so dearly—but only when I’m not the patient! ;) jk. Anyway, when I arrived to my destination, the fair was just beginning and vendors still setting up, so I looked around briefly until my darting eyes caught a glimpse of the sign for employee health, where the flu shots were being given. I quickly scrambled to get in line and thankfully was one of the first “victims”; I watched as the pre-filled syringes were taken from the cooler and carefully organized on top of a table already covered with alcohol swabs, band-aids and all other medical necessities and as each “victim” before me took their place in the designated chair, my heart grew increasingly anxious to just get it over with, as I think I’m more fond of giving shots than I am of receiving them! Once my turn arrived, I filled out the paperwork, took off my jacket and exposed my left bicep and waited for the dreaded “poke” and subsequent burning sensation, which I usually imagine is worse than it actually is. The nurse firmly squeezed my left bicep with one hand and quickly “jabbed” me with the other hand; as the sharp needle penetrated through my skin, I immediately tensed up, which just prolonged the process since the medicine couldn’t flow through contracted veins and would thus become sore in the hours to come. Once the medicine had been injected and the wound covered up with a band-aid, I gathered my things and began browsing each booth. The first booth I stopped at “conned” me into spinning a wheel in hopes of winning a prize, which I thought to be exceedingly unlikely but ended up winning a $5 gift certificate to the gift shop, which I couldn’t have been more excited about! They then gave me a cute cinch backpack with the Akron Children’s logo, which I then stuffed with miscellaneous other goodies found throughout, such as pens, hand sanitizers, informational pamphlets and lanyards. Once all booths were visited, I headed back over to the volunteer office, where I was expecting to orient to the new position I’d agreed to. On the way over, I was excitedly greeted with familiar faces by workers who had become my family after frequent hospital admissions as well as volunteer experiences; when you know nearly the whole hospital staff by name, you know you’ve been there too much! ;) lol. When I arrived at my destination, I was pleasantly surprised to find out the volunteer scheduled to run the main hospital surgery desk never showed up, leaving the staff desperate to find a replacement—not to mention in short notice time! Frantically, they turned to me to see if I’d be willing to run the desk, as I’d done in the years before—although they’d made a lot of improvements since then. I reluctantly agreed to be spontaneous and give it a try, pushing aside my fears of making a fool of myself and screwing everything up. As we arrived at my long lost home—the fourth floor surgery desk—the atmosphere instantly brightened as all of the familiar faces looked at me in shock and confusion, wondering where I’d been and how I was! Instantly all my fears of inadequacy dissipated into the mists of the chaotic air, as I relived the comforting and familiar duty of being the surgery desk attendant. I immediately jumped into the chaos and began answering phone calls, registering families and doing my best to answer questions. Once things had settled down and become more under control, the volunteer coordinator left to take the Chick-fil-A cow to each floor and I was left alone to run the desk. As surgeries were finished, I called the families up to put them in a private room to talk to the surgeon and wrote the surgeon’s name outside the door so the families and surgeons could talk in private. I also registered the families of the patients who had just been taken to surgery and explained to them that I’d call them once the surgery was finished so they could talk to the surgeon and so if they needed to leave the floor for any reason, to notify me so I could give them a pager to get ahold of them. Once they met with the surgeon, phase one recovery would call me to bring two family members back to see the child once he/she had woken up from anesthesia and was stabilized. I absolutely love the busy atmosphere of the surgery desk, as it keeps me on my toes and makes time fly by! The shift was over before I knew it, making me long to do it again! Once my replacement arrived and I updated her on all the surgeries and such, I signed out and grabbed lunch, which all volunteers get for free—yet another perk of being an Akron Children’s Hospital volunteer!! ;) Overall, it was an absolutely amazing day and I couldn’t have planned it better! It was beyond exciting to see familiar faces of those I’d formed such good relationships with and become close to!

Later that night, after I got home from volunteering, I started feeling ill and my arm was extremely sore and black and blue where I’d received my flu shot; being the minimizer that I am, I thought nothing of it and just went to bed early to hopefully sleep off the achy feeling and generalized weakness. During the night, however, I awoke several times with extreme nausea leading to emesis, diarrhea and a fever; I was so achy and weak that I couldn’t move and instantly knew something was wrong; I had agreed to volunteer early that morning with the superheroes who were making their appearance in the hospital but sadly it didn’t look like I’d be able to follow through due to illness, so I emailed the volunteer coordinator to let her know what was going on. I was looking so forward to visiting the patients’ rooms and seeing their faces light up at the sight of all ten superheroes but my plans were once again different from those God had in store for me; instead of volunteering, I ended up spending the entire day cooped up inside the house in order to allow my body the rest it desperately needed to recover from its suffering. I was supposed to get my labs drawn, as well, so we had to call my doctor to let her know what was going on; she suspected I had a reaction to the flu shot and told me to stay hydrated and come in the next morning for labwork to make sure everything was ok. So, I did as I was told and spent the whole day either sleeping on the couch or in my bed, with my good old water bottle right beside me, keeping me hydrated. As bedtime approached, I had a feeling I should pack my bag for a possible admission, because it always seems like when I least expect it I end up being admitted, so it’s better to be safe than sorry! I grabbed extra clothing, glasses, shampoo and conditioner, cosmetics and toiletries, my laptop and cords, Kindle fire and cell phone chargers, Sudoku, Bible, The Purpose Driven Life, my journal, word searches, coloring books, twistables, gel pens and all other things I thought I might need to keep me entertained and then headed to bed, fully at peace with whatever God had in store for me.

This morning I awoke feeling much better: I no longer had a fever, could move my arm and the achiness/weakness that had consumed me was no longer existent. As I got ready for my doctor’s appointment, the anxiety of the unknown once again overtook me; would I have to be admitted? I felt good! But, was this just because I’d gotten so used to feeling like crap that I no longer noticed it? Once we arrived at the hospital, we immediately bee-lined it for the outpatient lab, afraid it’d be packed and we’d have to wait for hours; much to our surprise however, there were only two other families present and in no time they called me back to have my blood drawn and the specimen was sent to the lab to be tested. We then made our way to the adolescent clinic to tell them we’d done my bloodwork and then headed over to the gift shop to do some shopping with the gift card I’d won. It was SO much fun to just look around at all the goodies and of course, my eyes were drawn to the bling; I looked through the rows of earrings and instantly fell in love with a pair of dangly diamond crosses which made all the other pairs look insignificant, and took my prized discovery up to the register to purchase them. After that, my mom of course wanted to stop at her favorite place in the hospital—the coffee stand—and we bought her favorite latte. I then put my new earrings in and we found seats in the newly reconstructed lounge area overlooking the playground and breathtaking scenery; it was a breath of fresh air to see the sun shining on the green grass, amidst the fall flowers and corn stalks—much more engaging and pleasant than the painted walls in the adolescent clinic! As we talked and played on our phones, it was encouraging to simply have this time of mother-daughter bonding and I couldn’t help but think how undeservedly blessed I am with the absolute best family! They have been through hell with me, literally watching me die and not knowing if I’d make it another second, but never once have they left my side or given up on me, which is more than I could ever ask for! Truly words cannot even begin to express how grateful I am for all they’ve so selflessly done and continue to do for me; all I know is I am blessed far beyond what I deserve! 

Anyway, once it’d been about an hour since the bloodwork had been taken, we headed back to the adolescent clinic to receive the results. The doctor took a seat beside me and kindly reported that she could tell I’ve really been trying and doing much better; all my labs were within normal range except for my phosphorous, which had dropped within the danger zone as I’d started eating again. She explained that this is often seen in refeeding syndrome, which is a “metabolic complication that occurs when nutritional support is given to severely malnourished patients. Metabolism shifts from a catabolic to an anabolic state. Insulin is released on carbohydrate intake, triggering cellular uptake of potassium, phosphate, and magnesium.” Since my body has no reserves to pull from, the increased demand for phosphorous resulted in a critical drop; in order to keep me from potentially dying from refeeding syndrome, which can result as the brain literally swells out of the skull due to critical drops in phosphorous as well as other fatal complications resulting from the electrolyte shifts, I agreed to be hospitalized so they could monitor my labs, making sure my phosphorous didn’t drop any lower as we continue to increase my intake; this has to be done very slowly and cautiously, making sure to closely monitor my vitals, blood, and watch for any bodily changes in swelling, etc which can occur at any moment during refeeding if it isn’t done correctly. It makes me feel good to know that they are taking such precautions to keep anything from happening since refeeding syndrome is such a risk and often times is fatal. My doctor said not to look at this as a setback but rather as a sign of progress—that they can obviously tell I’ve been working extremely hard and want to take extra precautions so all the progress and positive ground I’ve gained isn’t lost, so I can have my surgery sooner and get on with my life! Everyone has been so supportive; since 6200 is being remodeled, I am up on 8200 even though there is no cardiac monitoring; my doctor agreed to let the cardiac monitors go since my potassium is well within normal range and I’ve been doing so well, which is a positive! The staff has been exceedingly encouraging, saying things like “keep up the good work” and “keep working so hard”, which is refreshing to hear; it’s nice to be recognized for positive things once in a while! J But, anyway, they did an EKG, which came back normal, gave me a phosphorous supplement as well as half maintenance fluids with extra phosphorous through my IV and rechecked my labs; my phosphorous has come up slightly, which is a good sign. They’ll recheck it in the morning and if it’s normal, I should be able to go home but knowing how serious this is I’m trying to not be in a rush to get out of here but simply to relax in God’s plan and allow the nurses to care for me, since I don’t want to lose the progress I’ve worked so hard to make! Either way I will have to get the calories in, whether I’m in the hospital or not, which is ok with me—but not with ED. He hates every calorie I allow into my body, representing failure as the number on the scale goes up, but this is NOT failure but rather VICTORY; I can’t live in this condition much longer, so every step forward represents another day of life! This disease could have killed me countless times but God continues to redeem me because He must have something big planned—more than my wildest dreams can even begin to imagine; He is not done with me yet and I need to keep fighting so this purpose can be fulfilled and beauty arises from this pain! One day all the pain and suffering will make sense but for now I simply have to trust—one bite at a time!