Apologies that this entry is so “off the cuff.” I realized after I started chronicling events on Thursday that there was no way I could actually publish the cliffhanger that this health event has been but it seemed important to continue documenting our experience as it has happened, as best I could anyway.
January 5, 2017
Have you ever seen Jurassic Park? I’m thinking particularly of the scene where Timmy says “Well, we’re back in the car again.” And Dr. Grant says, “Well, at least you’re out of the tree.”
Why, you ask, would I be thinking of Jurassic Park right now? Because we’re back in the hospital, the 3rd time in a month. I’m actually typing this as I sit beside Ken’s bed in Room 13 of the Emergency Department. His temperature is above 103; he’s slipping in and out of awareness.
I’m distracting myself by talking to you all as we await the results of the blood work but there’s no way I can post this until we have some results. No sense in scaring anyone who reads it! I’ll just add to it as I get more information.
Since it may seem insensitive to some that I’m writing the blog while Ken’s lying in a hospital bed, let me start by saying that, after many hospitalizations in the last year, I’ve basically created a “go bag” for myself (Criminal Minds, for those of you who don’t recognize the quote). The only things I have to add are my computer and charge cords (since I use those every day and don’t have multiple sets), my wallet and anything Ken wants. My bag contains kleenex, lip balm, pens and pencils, activity books, snacks, ear buds, Tylenol, and a water bottle. Yes, I know that sounds as super nerdy as it is but I know myself — when I’m anxious, my thoughts are too scattered to be reliable. Having stuff to do helps me manage my own stress level.
Our current health event started a day or so ago. He hasn’t been hungry but otherwise okay. Yesterday he said he thought he was getting sick. Today, he had chills that couldn’t be warmed away by heated blankets and swaddling. I talked to the nurse at the cancer center. She said, “Watch for a temperature.” By 5:30, it was 101.5, so I called the answering service. While I waited for a callback from the doctor, Ken said, “Take my temperature again.” It was up to 102.5. The phone rang. As I expected, we needed to go immediately to the hospital.
The hospital has emergency valet parking (which is awesome by the way); I’ve warned Ken that he’s using a wheelchair (he hates them but he’s too weak to walk safely today). The valet runs to get one for us and I wheel Ken into the packed waiting room. Here’s where patient advocacy comes in: when I sign him in, under “reason for your visit,” instead of writing “very high fever,” I write “cancer patient with very high fever.” We find a spot for his wheelchair in the waiting room but it’s cold so I go back to the desk for a blanket. The woman there says, “We’re taking him back immediately.”
The cold air has dropped his temp to below normal but the triage nurse can see that he’s seriously ill. She tells the tech to wheel him back to room 13. The tech is chatty so we talk about how busy it is. When she asks if we need anything, Ken says, “Blankets.” He’s shivering again. She brings 4 heated blankets to us and I pile them on him.
A nurse comes in to see us. She takes several vials of blood from his port and tells us that she also will take blood from his arm too, shortly. “I’ll be back,” she says. A few minutes later she comes back to take his vitals. His temperature is back up to 102.5. She sets up a saline drip to cool him off and takes away two of his blankets. “I know you feel cold but your body is burning up,” she says.
An X-ray technician takes Ken away for chest X-rays. Somehow, in the 5 minutes he was gone, Ken persuaded the X-ray tech to give him more blankets. He’s swaddled up to his eyebrows again.
Across the hall is a man who broke his ankle. He’s being amazingly stoic, considering how bad the break is (I got that information directly from the X-ray tech, undoubtedly a breach of HIPAA). I closed Ken’s door because the tech warned me that they’re going to set that man’s ankle right there, across the hall from us. Pre-door closing, his occasional groans made me so anxious I feel like my stomach is in my throat. Now, I can’t hear anything from his room but my stomach still isn’t back where it belongs.
Two hours have passed. I did a crossword puzzle, played Tiny Wings on my phone until I was ready to chuck the phone out the window (into the snow), opened the door cautiously to assess our “neighbor” (he’s sound asleep and his ankle is set and wrapped). Ken, however, is worse. I just held him down as he tried, shakily, to get out of the bed to go … somewhere? He’s groaning that he’s thirsty but the nurse (who is pregnant and a little bit grumpy) won’t give him fluids right now so I’m trying (unsuccessfully) to distract him.
It’s after 10PM now. I’ve texted the kids to say “good night.” The emergency room doctor said that Ken can have a little water. He downs it in one gulp as the nurse says, “Sip it. Sip it. Don’t drink it all.” Then, “I’m glad I didn’t give you the big cup.” I laugh but she’s not amused. Ken’s back is hurting him. The nurse gets him some Tylenol (and another drink). His skin is hot to the touch and the nurse removes blankets again.
The doctor comes in around 11PM. Thankfully, the Tylenol has brought Ken’s temperature down a little so he’s not so out of it. He hears the doctor say that Ken has pneumonia in his right lung. The doctor is very concerned, mentions sepsis and asks if Ken’s been hospitalized recently. (“Yes, at this hospital two weeks ago.” “Oh,” says the doctor.) He has ordered two IV antibiotics: one that will be delivered every 12 hours, one every 8 hours.
January 6, 2017
It’s 7AM and I’m back in Ken’s room. First, let me catch you up on the final activity of last night: Transport was ordered and Ken moved into his room at 12:30. When we got there, the nurse admired his gel socks (for his terribly cracked chemo-dry feet) and switched them for hospital safety socks (you know the kind, with the anti-slip bottoms). She realized that today is his birthday, sang an abbreviated Happy Birthday, and drew balloons on the white board. After Ken thanked her, he told me to go home; I waited another hour to see that he was settled in and able to rest.
I’m back here early because 1) it’s Ken’s birthday, 2) I was too anxious to sleep anyway, and 3) I want to be here when the doctors round!
The hospital is my office today so I set myself up on a folding chair, using another folding chair as my desk. Time to start working!
The phone rings. It’s Ken’s work family and they’re singing Happy Birthday to him. I love it and so does he. Texts and calls continue for a bit of the morning, though he’s not really feeling well enough to talk to people or even hold the phone to his ear.
For the most part, time passes slowly in the hospital. Ken’s still getting IV antibiotics and he mostly dozes in his bed. Occasionally, I get up to fix his blankets, plug in or unplug “Shorty” (the IV device — I have pictures if you don’t believe me!), and the like. It’s strange; there’s a lot of activity. Dietary comes in to plan his meals, the nurse pops in to check his IV or add new meds, a patient care associate takes his temp and checks his pressure, someone brings his food, someone takes his food tray, housekeeping empties the garbage and cleans the floor….it’s busy and yet it’s so removed from “normal” life.
When his lunch tray arrived, I hustled to the cafeteria to grab something. On the way, I stopped at the gift shop to see if they had reading glasses. He usually has a pair in his pocket but somehow was without them, rendering his Kindle useless! Sure enough, they had very inexpensive glasses so I bought a couple pairs and took them upstairs with my grilled cheese sammie.
The CRNP from the cancer center stops by and tells Ken that he’ll be here through Monday. We both sigh at that. It seems very far away but she reminds him that he’s seriously ill. After she leaves, he dozes off and I re-focus on work.
My work day was busier than it usually is on a Friday, maybe because I’m caregiving and working? Anyway, I’m immersed in proofreading and surprised when someone enters. There are 6 nurses and a dietitian. They’ve brought a little cake and are singing Happy Birthday. I am embarrassed that it made me cry and I sing loudly along with them, clapping as their song ends.
They laughed with us for a moment and then ran back to their jobs. It’s quiet again and now I’m going back to work.
Another couple of hours have passed and the oncologist is here to check on Ken. He thinks Ken may be able to leave on Sunday, depending on the results of the blood cultures that were started on Thursday. An infectious disease specialist is going to consult on the antibiotics and outline a path to discharge. The doctor tells us that we caught the pneumonia early and that we’re lucky.
“… You gotta ask yourself one question, ‘Do I feel lucky?’ Well, do ya?” (I probably don’t need to identify a Dirty Harry quote for you but seriously, if you’ve never seen a Dirty Harry movie, you should get login to Amazon and binge watch!). Honestly, I think Ken doesn’t feel very lucky.
Ken’s nurse tells us that the infectious disease specialist is “a man of few words.” And then she makes a little face. A bit later, he walks into the room, tells Ken “we’re going to fix you right up” and turns to leave. Ken and I look at each other. Seriously?! The nurse was so right. Ken says, “What does that mean?” The doctor turns around and says that the infused antibiotics will run throughout Ken’s stay. His phone pings and he starts looking at it. Ken says, “Do you need to take that?” And on it goes. This guy is the definition of terrible bedside manner, worst experience we’ve had in the year this has been going on.
It’s after 7 and Ken wants me to go home to feed the kids. I know they’re fine but I’m exhausted, so I’m giving in.
January 7, 2017
It’s a little later than yesterday. Ken texted me early this morning, asking me to take the kids to breakfast at Rocky’s, his favorite breakfast place. It’s a tiny, breakfast-only restaurant (diner really) in the Bloomfield section of Pittsburgh and it has a true Yinzer vibe (if you don’t know what that means, I can only suggest that you google it!). After breakfast, the kids drop me off here at the hospital.
The Aide was just in. His temperature is still normal. It’s mid-morning and very quiet.
Ken didn’t like his lunch much – baked cod, mashed potatoes and corn, plus some fresh fruit. He picked at the cod but ate the fruit.
It’s about 3:30 and the nurse has just told us that Ken is being moved to an oncology floor. I need to pack his stuff.
We hadn’t even reached his room on 6 when I bumped into an old friend! She came into Ken’s room before she left the floor and we chatted for a bit. Her daddy is here. We both said “I’m happy to see you but sad to see you here.”
Ken’s not hungry. He’s talking about refusing his dinner. I suggest that we “take a look at it first” to see if it appeals to him. He agrees to wait.
His dinner is here, a chicken caesar salad. He’s nibbling at the lettuce but making disparaging remarks about the chicken, which he refuses to eat.
It’s after 6:30 and he’s getting agitated. I asked if he’s feeling okay and he says that he is. At 7, there’s a shift change and the new Aide comes in to check his vitals. His temperature is 99.7. She’s not concerned but I am.
The evening nurse was just here. I told her that his temperature is concerning. She’s busy and not terribly interested. I insisted that it was bad. She agrees to send the Aide back in to check it again. I have watched the clock since, waiting for the Aide to return. And here she is, an hour later. His temperature is now 101.1.
The Aide hustles out to let the nurse know. The nurse comes in and says, “I’ll get you some Tylenol.” So, seeing as I’m pushy, I say, “Aren’t we concerned about him having a temp?” Fortunately, we’re both friendly and collaborative. After some discussion, she agreed to call the doctor and has just stepped out to have someone page him.
The nurse just came back with Tylenol. She said the doctor is concerned and we’ll see him in the morning. It’s 10PM. I’m heading home to do some laundry and go to bed.
January 8, 2017
Not much has happened so far today. The oncologist came in and said he’s concerned about the fever. The infectious disease specialist is looking for the cause. Apparently he has a theoretical flow chart of symptoms and treatment and he’s tracking Ken’s treatment down the chart.
Ken’s irritable. His temperature is normal right now but he’s cold and not feeling great. For awhile I was offering him activities and he was rejecting them. “Walk around the floor?” “No.” “Crossword puzzle?” “No.” “Want to use my chromebook?” “Not right now.” But slowly I figured something out.
“Ken, I’m stuck. What’s an 8-letter word for ‘ransomed,’ starting with R?” He might not do a crossword puzzle but he’ll help me with one! And so we’ve passed a couple hours. The Steelers-Dolphins game came on at 1. We’re not really football fans. He’s watching without the sound; that way we don’t have to hear the commentary or the commercials!
The nurse just stopped by. Ken can’t be released without the infectious disease specialist’s visit. I’m definitely thinking Ken is going to be stuck here another night. Part of me wants to see him not have a fever through the night. Another part of me wants us to be home. It’s Ken’s journey so I keep my mouth shut while he talks to the nurse. He wants to go home. She’s going to page the doctor.
Three hours have passed and the specialist is a no-show. We’ve been sitting here with the crossword puzzles all afternoon. Ken’s started having some chills and we are using a handheld thermometer to monitor his temperature. The most recent result was above 100 and I called for the Aide. She brought the official thermometer in and confirmed that it’s back up again. The nurse calls it a “low-grade fever.” Ken is not going home today.
January 9, 2017
This morning, the CRNP came in to see Ken. His bloodwork today showed that his magnesium level is low again. She ordered a 4-hour drip but that’s okay because the infectious disease specialist didn’t show up until 2:15 today. After reviewing Ken’s medical chart, he wrote a script for an oral antibiotic that Ken will take for the next week and said we could go home. And that’s where we are now. I am very grateful!
