Happy Hospital Daze

December tried. He tried really hard to keep me going. But in the second half, he discovered he wasn’t strong enough to protect me, and wiped the last two weeks of my month away.

My port site began to feel tender and was moderately red (not angry, just irked) the third week of December. After a no-surprises dressing change and re-access, we were relieved and chalked it up to just a plain old of-course-it-hurts-when-you-poke-a-19-gauge-needle-through-my-chest-wall week. For Christmas, my generous in-laws rented rooms for all their adult children and their families in a resort in Ocean Shores. It was fun, intimate, never chaotic or frenetic, 100% fabulous family time, and on the 23rd, the entire family excitedly watched the AWESOME Seahawks game before going to bed. Greg and I had been there since the 20th, and our plan was to stay in Ocean Shores for five days, then drive home on Christmas morning to celebrate with my side of the family.

Somehow, something snuck in and stole our holiday. On the morning of Christmas Eve, I noticed that my port site had been leaking yellowish-brownish fluid. As always, I carry an emergency dressing change kit, so we de-accessed… and pus and serosanguineous fluid began running down my skin. I’d had no fevers or other symptoms, and I can’t be de-accessed for long since I have IV meds and hydration, so we re-accessed the port. It felt a little better, but we knew that the day after Christmas we’d have to visit my Infectious Disease doc. Despite the signs of infection, the day had started out quite well, really, but around noon I felt my temperature rising. By late afternoon/early evening, I began to have worsening shaking chills with a rapidly rising fever on the side (NOT what I ordered). We were three hours from “my” medical center, and didn’t want to risk going to a small community hospital that didn’t know my complicated history. So I lied down in a blanket on the floor by the fire while Greg and his dad loaded the car, and then we drove the three hours to the ER in Seattle.

Now, ever since 2003, Greg and I have openly discussed the likelihood of my early passing. Choosing to high-tail it to Seattle was risky, as septic shock could have very easily overtaken me. Once we were on our way, we tearfully discussed the what-ifs: what if I lose consciousness? Should Greg pull over and call an ambulance? Or just pull over and hold me until I pass? What if it’s already too late? What if I die on Christmas Eve or Christmas? Fortunately the answers to the questions were not required: we made it to the ER at about 23:15 on Christmas Eve.

After they took more blood than they left in me, I was admitted for stabilization and antibiotic treatment. When all three cultures (port site, port itself, and bloodstream) turned positive within twelve hours (ultimately ID’d as penicillin-resistant Staph aureus), we knew I’d have to have my port removed (often a painful procedure, done with only local anesthesia). But first I had to stabilize—I’d begun showing symptoms of septic shock with low blood pressure (60-70/40-50) despite four liters of saline in the ER. So I spent the first 24 hours (i.e., Christmas) in the ICU (a.k.a. the Interrupted Christmas Unit) where I was exhausted and delirious. Greg chose to stay at the hospital’s attached inn, since it was nearly 3am Christmas morning. Later that day (did I mention it was Christmas Day?) they did remove my port, with hardly any pain at all. Greg actually filmed it, so I got to see it later, and we even got to take the (sterilized!) port home to show interested folks what is implanted in my chest. And the next day I got to move to a quieter, less intense unit.

Now, one thing is crucial to understand here: I have zero-zip-zilch functional peripheral veins left. What I have is a collection of scarred and weak blood-carrying-plumbing-pipes that hide from IV techs and self-destruct at will. So in four days at the hospital, I blew eight IV lines, leaving me with bruises and dramatically swollen IV sites (from the IV liquids being forced into my tissues when the insolent vein seeks revenge for being treated thus). And that’s where the problem came up: I had to have IV access for anti-nausea meds and 3x/day antibiotics to make sure the new port would be protected from the infection, but we’d need to have clear cultures and ideally a week before placing a new port. I was so desperate to get OUT that I was even willing to have a PICC (peripherally inserted central catheter) placed (which I detest) if they’d just let me go home until surgery the following Wednesday. Unfortunately the PICC was ruled out due to its bacterial magnetism. If I were to go home, I’d need a lasting peripheral IV for five more days. I wouldn’t have any IV nutrition (it’s caustic to the veins), and I had to promise to eat and drink as much as possible.

So they all agreed. In theory. The problem was that I had nowhere to place an IV line. Finally my vascular surgeon and his team of residents and interns came in and looked me over, admiring and fawning over my beautiful external jugular veins (I blushed). After three tries they got an IV into my neck to hold me until port surgery five days hence; Greg packed my stuff up, and we got our walking papers.

[Just as a side note: when people—even in a hospital—see that you require an IV in your neck, there is a wide spectrum of facial expressions that I wish I could photograph and post here. Classic.]

HOME! After nine days, we were home. Our ONLY responsibility was to protect that jugular line, which we did… for 2½ days. Yes, even the mighty jugular doesn’t care to be invaded, so on New Year’s Eve, when my neck, shoulder, and chest began jiggling painfully (probably the closest I’ll ever be to a double chin), we called the surgeon, who made it clear that we should waste no time in getting to the ER—if the actual IV cannula came out, I’d bleed out under the skin. So we grabbed our ever-ready hospital bag and I cradled my painful IV site and the squishy, fluid-swollen tissues that made me look like a one-sided steroid abuser, and on New Year’s Eve we were back in the ER, ringing in the New Year by watching a Twilight Zone marathon on SyFy while waiting as the surgical and medical teams battled it out over admitting me. Meanwhile, an IV tech came in with the magic wand (an ultrasound) to find a deep vein—and subsequently landed a 2½ inch long cannula—right in the crook of my right elbow (and yes, I’m right handed).

The surgeon came in to let us know that I’d be admitted under the medical team until Wednesday—meaning we’d spend Christmas Eve, Christmas, New Year’s Eve, and New Year’s Day in the hospital. I think a said a bad word, but I was so sleepy I may have just thought it really loudly.

We prepared to be taken up to the hospital, but were interrupted by the med team’s entrance who (by God’s grace!) said that we were obviously capable of taking care of me at home, so hospitalization would have no benefit—in fact, with all the germs around there, I’d be a good lot safer at home. All I had to do was keep my right arm straight and make that IV last for the two days left before my surgery.

We were determined to avoid further inpatient stays, so to protect my IV we ran strips of silk tape down the back of my entire arm so I couldn’t bend it; then tied my right wrist to my right thigh as an extra hindrance. Greg helped me bathe, and we thanked God for His care and protection—and for our documented and respected reputation as completely competent to manage all of my conditions. We felt so good going home that Greg though up the following riddle:

“What do you call the hungriest IV tech in the hospital?”

My IV survived, and they were even able to use it for the surgery, which went smoothly. My neck is very sore on both sides, and my IV sites are providing the rare skin tone commonly referred to as “rainbow.” But I have my port, I’m getting my full IV nutrition again, and despite missing the holiday celebrations, I feel blessed to have spent only four days in the hospital; and with the Lord’s protection, my new port will last its maximum five years with no further complications.

As a side note, two interesting things happened. First, I had a “premonition” on Christmas 2011 that someone would be missing the next Christmas (turned out to be me!). The second one might call my sanity into question, but I believe God gave me a choice on Christmas Eve: I could stay the night at Ocean Shores and die during the night, or I could dash to the hospital with His protection. He was letting me choose to go to my royal Home or stay here awhile longer. Having made the choice, I was no longer worried about whether or not I’d make it to the hospital—I had been offered a choice, and while heaven will be beyond anything I’ve ever known, I still feel like I have work to do here for awhile.

Oh, and the answer to Greg’s riddle:

“The phlebotomist pit.”

About Jenn

While pursuing my literary and professional goals, I managed a severe form of gastroparesis (paralysis of the stomach) for six years, now complicated by full GI failure and a nonspecific autonomic failure of unknown etiology. In August of 2010, I finally had my stomach removed (total gastrectomy) to stop the 24/7 nausea and to lessen the risk of spreading infection to my central IV line (port-a-cath), as both of my gastric tubes (one G-tube in my stomach; one J-tube in my small intestine) were chronically–and extremely painfully–infected for longer than a year. I couldn’t possibly have survived the six-plus years of TPN (IV nutrition), surgeries, new (and unrelated) diagnoses, and being forced to go on disability without my amazingly supportive, encouraging, adoring, patient Care Partner and husband, Greg (married 1999)… Who reminds me of the unconditional, perfect love of God as shown through His Son, Jesus. My writing credits include The Da Vinci Code Adventure and Two Roads Through Narnia as well as several movie review compilations. Not all of the entries are health-related. My conditions have finally settled into a quasi-normal routine. There will be ebbs and flows, but I am still active, and plan to live as long as I’m alive.
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0 Responses to Happy Hospital Daze

  1. Brenda says:

    You (and Greg) are amazing! Thank you for being so open & honest. Love the humor you two show in this difficult thing called life. Take care! Praying for your safety & strength.

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