Jess' Comeback

My name is Kellie and I'm writing this on behalf of my sister, Jessica, and our family.

(Warning: there's some graphic photos at the end)

As you may have heard, Jess became very sick in early September 2022, after a year of trips to the Emergency Room, swelling in her lymph nodes and consultations with specialists in Burlington to pinpoint what was going on. Each visit left both Jess and the provider with no further clarification as to what was going on with her.

At the beginning of September, she finally had a biopsy done of the lymph nodes on the left side of her neck, hopeful the results would yield an answer, which would then lead to treatment, bringing her relief and a sense of normalcy.

Within a few days of the biopsy (biopsy was done on a Thursday), she had redness starting in her armpit (Sunday), which then spread to the rib cage area of the upper left side of her body (Wednesday). She was feeling lousy, unable to move her arm and knew something was wrong so, off to the ER she went. Within hours of being there, my mom witnessed what was initially thought to be a seizure, but was determined to be the moment Jess went into septic shock. Her blood pressure bottomed out and they were unable to stabilize her enough to even move her to a larger hospital. Around 1am on September 8th, she was transferred from the hospital in Saranac Lake to Albany Medical Center in full sepsis with kidney failure and cardiogenic shock. In constant contact with my oldest nephew and mom, I left my home at 3:30am to meet the ambulance at Albany Med. I was turned away as she was a direct admission (not being held in the ER as we had been told) and I needed to wait for visiting hours to begin at 10am. I spoke to her at 5:30--she was in pain, but was coherent enough to provide her nurse with my name and phone number and consent for them to speak to me. Surely this was a good sign, right?

At 10:30am, I was entering the medical ICU at the hospital. I located her room and was, honestly, unphased at the 7 or 8 doctors outside of her room. I maneuvered around them, stepped into the room and that is when my world stopped: my sister was no longer coherent. She was not able to speak. She was not even awake. I remember staring at her, motionless on the bed; jet black hair piled atop her head in a messy bun; her perfectly manicured nails, painted the same shade as her hair, stark contrast against the white hospital sheet. I stared at her, unable to speak; aware of someone shrieking "NOOOOOOOO! Oh my God! What happened? What is going on?" and then startling myself when I realized it was ME shrieking. Those doctors huddled outside her room? They were now swooping down on me like a band of vultures; firing questions at me that I struggled to comprehend at that moment; their voices fading in and out like the teacher on Charlie Brown: had she been sick? What were her symptoms prior to going to the ER? What was her medical history? Did I know what medications she was on?

They explained she was fully ventilated, in a medically induced coma and had already been to the OR. I stared at the monitor above her head--BP was 51/45; HR was 153; multiple IV pumps funneling a slew of meds into her lifeless body. My eyes moved to the ventilator on the other side; the graph showing the machine breathing for her was almost hypnotic; the "whoosh"-ing sound as it forced air into her lungs became white noise.

Two doctors explained what they knew: she had necrotizing fasciitis (a flesh-eating bacteria) that had taken off like wildfire in her body (her trip to the OR earlier in the morning was to debride (cut away) the area of tissue/skin that was being overtaken by the bacteria.); this bacteria was what they referred to as "gram negative" (meaning it is more resistant to antibiotics); they had placed her in a medically induced coma and she was currently on machine (ventilator) and chemical (ALL the meds) life support. I sat in a hideously uncomfortable wooden chair beside her for hours--I held her hand, I talked to her, my tears spilled onto her face as I pressed my forehead to hers and begged her not to give up, that her boys needed her. I was trying to keep my mom updated, as well as a couple of people in my inner circle. SO MUCH INFORMATION!

Early afternoon, one of the doctors told me I needed to call my mom and nephews. They needed to come immediately--my sister's infection was not responding to meds, the vent had been increased to the max settings, her bloodwork showed kidney failure (dialysis was started) with liver failure imminent, her white cell count had skyrocketed to 71 and her heart was only functioning at 25% (cardiogenic shock).

She was given a less than 5% chance of making it through the night.

Do you want to know what a crushed heart feels like? Tell a mother her child has a less than 5% chance of being alive the next day. Tell your nephews their mother has less than a 5% chance of being alive the next day. Try and let it sink in that your sister has a less than 5% chance of being alive the next day. It's a bone crushing feeling of weight and you find yourself suddenly having a panic attack, not able to breathe, the room spinning around you as nurses and a doctor try and get you to calm down before you end up sharing a bed with your sister.

Jess, for those that don't know, is not only a fighter, but she's stubborn as can be! I think this is what sparked a glimmer of hope deep within me. Surely she'd survive. Right?

After some difficult conversations with two of her trauma doctors, we went home. We waited--too exhausted to do anything and too afraid to sleep soundly. Family from out of town was with us that first weekend, but all we could do was wait. We had no answers, timeline or guarantee. We just had to wait.

As one day became two, then five and 10, we watched as she hung on--her numbers slowly started improving, but she was not out of the woods by a long shot. She was initially taken to the OR every other day for debridement of the necrotic tissue in her left armpit/upper ribcage area--sepsis didn't just land on her: it sunk its teeth into her like a rabid dog and refused to let up. Each trip to the OR resulted in more necrotic tissue being removed and would ultimately result in Jess being cut open from her armpit to the groin area, with the wound extending internally to her chest wall (you know it’s not good when trauma surgeons with 15+ years experience tell you this is one of the worst cases they’ve ever seen).

After 12 days in a coma, the sedation meds were stopped to do a neurological check (it was 41 hours for her to come out of it entirely) and she was able to be extubated a couple of days later. She was not aware of all that had happened to her and I would spend hours a day explaining it to her, watching her eyes fill with tears and expressions of horror move across her face while trying to hide my emotional distress. I spent hours talking with doctors, social workers, family members, workers for Medicaid, etc. I became schooled very fast in medical jargon, watching numbers on a monitor, and reading charts, asking questions and respectfully requiring answers in English. We now waited--was the infection under control? Her hands and feet had turned purple (mottled) within 24 hours of being hospitalized—vascular surgeons used various equipment multiple times a day to check for sounds of circulation and while there, it was faint. This brought more worries: would the circulation (slowed from the massive amounts of medications needed to stabilize her blood pressure those first 10-12 days) return to her hands and feet? Was it too far gone? I studied her hands and feet HARD every day, taking pictures to have for comparison; desperate for any sign that blood flow was returning, rubbing them between my own hands to try and jump start blood flow; silently praying she wouldn’t endure any more trauma. The word "amputation" was hanging over everyone--we knew amputations were looming, but we were all hopeful it would be a finger, maybe a hand, at most. While not ideal, it wouldn't slow Jess down too much. What about the massive, gaping wound on her left side? Would the plastics and trauma team be able to construct coverage for the axillary artery in the left armpit? How would they cover the ribcage area that resembled an animal carcass left on the side of the road?

In early October, Jess was transferred to the 3rd ICU since her ordeal began. It was then determined, after MANY consults with trauma, ortho and vascular surgical teams, that she would need amputations on all four limbs: the left side was done first (arm just below the elbow and leg mid-shin) with the right side being done a week later (arm just at elbow and leg just a little shorter than the left).

Yes, it's all as awful as it sounds.

The gaping wound on her left side was covered Integra®, a mix of bovine tendon collagen and special silicone layer; it controls water vapor loss, provides a flexible covering for the wound surface (similar to the tissues and muscles below the skin surface); and provides a support structure for cells to migrate within the tissues for repair. This was covered with a wound vac dressing, creating full coverage and allowing for drainage. She then had a skin graft taken from her upper right thigh to cover the Integra. They weren’t able to just “stitch it close” due to all the necrotic tissue that was removed earlier on. She will permanently look like a shark took a bite out of her side (we actually refer to this area as her shark bite). The axillary artery in her armpit was covered with tissue and vessels from the area of her forearm that didn’t die off.

Over the next handful of weeks, we would see Jess go through phantom nerve pain, hallucinations from the high doses of pain meds she was on, confusion and withdrawal as those meds were lowered as she improved. We watched as she slowly accepted this as her new way of life. There were good days spent wheeling her around the hospital for a change of scenery and rough days spent watching her be lethargic and out of it as meds were adjusted. Many of my days were spent advocating for her care, utilizing the amazing members of her team to be sure she received what was needed. As she kept putting distance between herself and near death, we planned for rehab. Little did we know how incredibly difficult this process would be (combined with working continuously to apply for Medicaid and SSDI). When I tell you I called no less than 60 rehabs on my own, each one requiring me to explain all that we had been going through, begging for them to take her, I am not exaggerating.

We sat with falling hearts as rehabs in the Albany area said they could not take her (the upstate NY area immediately said no--they didn't have the staff to provide the care she needed initially). Rehabs in the central and western NY areas joined the list of "nos".

We received an offer from a rehab in the Bronx. While not ideal, we took it. We knew our options were limited, and she needed rehab to build strength, learn to do transfers with assistance, use her residual limbs for some tasks, and rebuild her abilities to do even the most basic task like eating on her own, using her phone and adjusting her position in bed. Two days after we accepted the offer, the facility retracted it and said they couldn't provide the care she needed after further review. Our referral net was then expanded to NJ and an offer was extended.

December 10th, after 93 days in the hospital, I packed Jess' things, cleaned her up, got her dressed, took her for coffee in the hospital cafeteria and waited for the transport to come for her. I watched as she was carefully transferred to a stretcher, put my head against her's and told her I loved her and it would be okay.

After 93 days (and a total of 24 surgeries), I would no longer be spending 8-10 hours a day at the hospital ; my mom and nephews wouldn't be making trips down here to see her; the next phase of this nightmare would start. Dare I say we felt we could breathe easily? Good thing I'm a pessimist at times--joke was on me with this one!

Within 24 hours of Jess arriving at rehab, she became sick and had to be transferred to an ER at a nearby hospital--three hours from me and over 5 from my mom and the boys. Her blood pressure was dropping dangerously low and the doctors feared she was approaching septic shock--again. She was moved to ICU and, once again, found herself with a central line IV and many antibotics. Luckily, the infection was controlled, the skin graft to cover the left side was showing NO signs of rejection and she was moved to a regular room within a handful of days. Her rehab bed was given away and I was frantically trying to get her moved back to Albany Med--I needed her closer and she needed the trauma and plastics team that, quite literally, knew her inside and out. It was then I learned how downright RIDICULOUS insurance companies are—they initially denied the transfer as the hospital she was in was, just as Albany Med, a level 1 trauma facility and thereby deemed capable of providing the level of care she required. It took some fighting, but we eventually got her re-admitted to Albany Med on December 26th. Round 3 of this nightmare was beginning.

Each of us, in our own way, felt as if we were back at the beginning regarding admission to a rehab facility. Jess, in her very Jess-like way, was chomping at the bit to get home, but rehab was critical. Without it, she could potentially be denied prosthetics, approval for help at home and it would make her new life that much more difficult and trying. We weren’t trained to provide the therapy she needed to be able to get prosthetics nor were we trained to provide the care she needed. Finally, a facility in Catskill, NY was willing to take her and on January 31, 2023 she was transferred.

Over the next 4 weeks, Jess gained strength in learning how to transfer herself (with a small amount of help) and use adaptive equipment to feed herself. Home was on the horizon! We had some appointments to try and tackle the hurdle of help at home—as anyone who lives in outlying areas knows, certain services can be difficult, at best, to obtain. With staffing shortages, as well as the BS insurance rules, we were told time and time again there just was not any help available. Our Aunt did some research and sent me information regarding hiring friends/family members to be caregivers. This, too, was quite the process.

After HOURS of assessment appointments, and dozens upon dozens of phone calls to those that would determine how much help she would qualify for, we are STILL waiting for a determination letter of how many hours a week paid care can be provided (just to give you an idea: these assessments were done the 3rd week of February. As I type this, it's Easter Sunday); we are STILL waiting for help from home care agencies and we are STILL waiting for SSDI to be approved. The system is more broken than you can ever imagine (unless you've had to battle it and then? You know!)

On February 27, 2023, Jess was released from rehab AND given clearance for prosthetics! Can we get a WOOT WOOT?! 173 days later, Jess was home. She would eat dinner, hug and kiss her boys and sleep in her bed.

Jess received her prosthetic legs at the end of March and is working with steady determination at PT, as well as OT, twice a week. It's not an easy process and there's quite a bit of discomfort to work through. The tentative plan is to have hands within the next 4-6 weeks. This, too, will require a lot of PT and OT.

Now, the next chapter begins: moving forward with daunting co-pays from medical bills (1.3 million dollars was billed to insurance just from Albany Med from September to December!). Wrap your brain around that for a second! We're waiting on the final bill from the rehab facility--which is a pretty word for "skilled nursing facility", upcoming expenses for prosthetics, as well as modifications to her vehicle and the never-ending expenses just to live (groceries, utilities, rent and modifications to her home (i.e. door handles she can push down with her residual limb)), travel expenses to get to the many follow-up appointments (she is followed closely by her team of trauma, plastics and ortho surgeons in the Albany area) she will have as well as her PT, OT and prosthetics appointments.

Jess worked incredibly hard to turn her life around from where she was a dozen years ago to where she was when this life-threatening infection tried to kill her. Her job was her passion and she thrived in her position as a Crisis Response Supervisor in Essex County. She won’t be able to return to her job for quite some time and has been placed on unpaid leave.

We understand finances are tight for so many presently--writing/publishing this wasn’t something we took lightly or as a way to “make a fast buck” and this pride, this determination, to be able to do it alone is why we haven’t asked for help sooner. We genuinely are feeling the walls closing in with all the expenses we as a family have taken on since September and with the heavy expenses hovering on the horizon. If you can donate, we are forever grateful. If you aren’t able to donate, we completely understand (and still think you’re pretty spectacular). All donations received will go into an account strictly for the expenses outlined above.

If you take anything from reading this, let it be: life can truly change in a matter of seconds. You’re left not knowing which end is up; feeling suffocated by the unknown, exhausted from months of physical and mental stress on a level you truly don’t know unless you’ve experienced a major medical issue with someone you love; bargaining with a God you don’t know if you believe in or not and willing to sacrifice your own life to save her’s (true story: on night 2, I sat with my mother, aunt and cousin as yet another doctor waterboarded us with information on her condition. When she said my sister’s heart was functioning at 25%, I said “can you just give her mine?!”); desperate to just catch your breath, to find an answer to the “why” questions.

One other important piece of information: if you don't have a health care proxy, living will or power of attorney in place presently, I STRONGLY urge you to take care of these things. Not only will it cement YOUR wishes, it will lift some stress off your family.

Tomorrow is never promised. Be grateful for what you have.