“And while I was down there, I had to save an octopus.”
I paused, again debating how to deal with such a statement, but seeing that there was no hint of self-awareness of the absurdity of her comment, I went with it.
“You had to save an octopus?”
“Yes, and then I fixed a fish fin,” she added.
“How did you fix the fish fin?”
She made a sewing motion with her good left hand.
“You sewed it?”
“Yes.”
“How did you know how to do that?”
“I didn’t. I just went for it.”
I held back my laughter, but let a smile play across my mouth. She smiled, too, proud of what she had done. That’s my girl, not content to just lay back and wait for her procedure. She jumped right in, no training, no prep, just went to work fixing that damn fish, proving that confidence is at least half the battle in doing.
In contrast to her accomplishment, I was frustrated and stepped out of the room to try to find out when the now-delayed PEG procedure was going to happen. I was told that they didn’t know yet, maybe on Friday; they had to contact the makers of the halo vest. “Doesn’t anyone talk to each other around here?” I asked. There was no answer.
When I left for home at the end of the day, Susan was fine, a little aggravated that the irritating tube that scraped her nasal membrane was still down her throat, but peaceful enough that I didn’t worry about leaving her for the night.
All that had changed by the time I arrived the following morning.
She was not happy. She was anxious to leave, insisting we do, and not taking no for an answer. I tried to explain that it wasn’t possible, but she didn’t want to hear it. I left the room for just a few minutes and when I returned, apparently in a rage, she had ripped at the oxygen mask attached to her trach and once again pulled out her fucking nose tube! I couldn’t believe it. We had relaxed her hand restraints because she seemed to be over pulling it out, but now we were going to pay big time for that lack of diligence.
“Sweetheart, why did you do that?! You know that’s where your nourishment and medication come from. Now they’re going to have to put it back in again, which you really hate.”
She went off on a tear, “No. I don’t care! Two thousand dollars we gave these people, and for what?! Let’s go!”
There was no explaining. She didn’t care about the necessity of the NG. She didn’t care that her trach valve was how they were keeping her lungs clear. She just wanted to leave—now. Finally, not knowing what else to do, I played along and said, “Okay, let’s go.”
I got the nurse, telling them that Susan wanted to sit up at the edge of the bed. They helped me get her into position, where she struggled to get her bearings, using every bit of strength to breathe through the lightheadedness and nausea until after about ten minutes of this, she eventually relented, “Okay, I need to lay down again.”
We laid her back down and she caught her breath after the huge exertion. Then, after two minutes of recovering, she said to me again, “Okay, come on, let’s go.”
This little game went on all morning. She even tried to negotiate with the hospital staff to get her a wheelchair so that she could go across the street, promising to return it later that day. She asked anyone and everyone who ventured into the room if she could leave. I had doctors explain it, nurses, physical therapists. And as person after person denied her request, she became more and more frustrated and angry…with me! Why wasn’t I listening to her? Why wasn’t I helping her? She began to cry, and I felt more and more helpless, until I finally leaned into her and lost it, the stress of the morning finally breaking me.
“I don’t know what to do, sweetheart. I’m sorry. I’m trying so hard to help you, to keep you alive, but I don’t know how.”
It wasn’t meant to be an emotional tactic, but there is something that Susan cares about more than her own needs; it’s her children, and it’s me. Seeing how upset I was, how helpless I felt, she immediately softened. “I know you’re doing your best. It’s okay.”
She calmed down a little after this, but was still insisting we leave. To keep her away from her trach valve, her hands were once again restrained. “Come on, untie my hands,” she pleaded.
“I can’t.”
“Why not?”
Why not? I wondered how to respond. She wouldn’t accept that it was to keep her safe. She insisted that she wouldn’t do anything, but we’d seen where that had gotten us before. Instead, I moved out of her eye line, where she couldn’t turn her head, locked in the halo.
“I can’t…because my hands are tied, too.”
I didn’t mean it figuratively. I meant it absolutely literally. I told her that I couldn’t get free. I was mad and I was frustrated just like her, but I was also trying to relax, breathe, and not fight it.
Hearing this, she laid back and said supportively, “Okay, but keep working at untying them. You can do it.”
I didn’t like having to play these mind games with her, but I didn’t know what else to do to get her through this. As the afternoon wore on, she became calmer, but since she wasn’t scheduled to get the PEG put in for another two days, they were going to have to find a way to reinsert the miserable NG tube until then. I didn’t know how they planned to do that, plus, she’d have to continue to be restrained, which was going to drive her crazy. Having the PEG procedure delayed was really biting us in the ass.
I met with her psychiatrist and discussed the plan for how to medicate her so that the tube could be reinserted without her flipping out. The doctor recommended a heavy cocktail of drugs, which would both keep her conscious for the tube insertion (because she needs to swallow the tube) but keep her docile enough for them to do the procedure. Okay, at least we had a plan. Whether it would work or not, we couldn’t know.
The other thing I had hoped to do that afternoon was bring the kids in for a visit. In all this time, they still hadn’t seen their mom. Even though this building didn’t have the same visitor restrictions as the ICU, I wanted a couple of days under our belt there before bringing them, to let her voice get a little stronger, her head maybe a bit clearer about where she was. I had prepped the kids that she was a little confused and might say things that were kind of funny. Hearing all of this, on top of worrying what she looked like physically, they were apprehensive, but they also wanted to visit; they missed her. The day before, they had spoken to her on the phone, and Susan even posed for a picture that I showed them to demystify what she looked like. We were ready, and so was she, asking me to “fluff up the room a bit” in anticipation of their arrival.
But now, with the cocktail beginning at 3 p.m. and the NG tube going back in, that plan wasn’t going to work. So instead of her pre-Thanksgiving treat, seeing the kids would have to wait until Thanksgiving Day. Still, it would be a nice way to share the holiday.
At 3 p.m., as scheduled, they began administering the drugs, and by 3:30 they were ready to insert the tube again. I told them I didn’t want to be in the room for that, but they said it might help to keep her calm, so I reluctantly stayed. She was completely knocked out from the heavy dose of medication, but as soon as they started shoving that tube up her nose, even with enough drugs in her system to knock out a horse, she was awake and begging for them to stop. It was unbearable to watch as they held her hands down, continuing to force it in while Susan screamed bloody murder.
When it was over, through disoriented tears, she cried, “Why would you do that to someone?! Why would you shove a cat up my nose like that?! And that chicken tail?! Why would you do that, you stupid Indian lesbian bitch?!”
A complete delusional nightmare, not her finest moment, and one she will be mortified to hear about. I don’t know where she got the idea that the nurse was Indian. She wasn’t. Or a lesbian; I don’t think so. But a bitch? Sure, after all we’ve been through with the horrible NG tubes, anyone who would subject her to that kind of repeated torture deserves a little bit of
name calling.
It was absolutely horrific, but at last it was finally back in, and as soon as it was, the drugs took over and Susan calmed down and drifted off again. I sat and recovered as well, waiting another hour or so to make sure she was okay. As I was leaving for the day to join the kids for dinner at home, X-ray arrived to check that the tube was properly placed in her stomach before starting her food up. We had made it through. The plan had worked, well enough anyway, and we were back on track. I was really looking forward to getting that PEG tube in, removing the NG tube, and finally untying her hands.
Thanksgiving morning I got to the hospital at around 7:30 to get a little preview of her mood before going back home to get the kids. I walked down the hall, a little anxious as to which Susan I was going to find—the agitated one or the more sedate one. I’ve learned not to have expectations, but still, I wasn’t prepared for what I did find.
As soon as I walked into her room, I saw a bunch of nurses surrounding her. I asked what was going on and one of them brought me outside and informed me they were moving her back to the ICU. Why? I wondered. She was doing so well.
Apparently, after I left, at around 7:30 p.m., she pulled out her NG tube again. How that happened, I still have no idea. I had restrained her hands myself. I had even made a sign and posted it over her bed that read, “Do NOT remove hand restraints! She will pull out her NG tube!” The only explanation I got from the nursing staff was, “She’s really strong.” My mind raced, What, she tore through the fabric?! Ripped the metal from the bed?! Threw you aside, grabbed a scalpel and cut herself free?! “So, we got the tube back in,” the nurse continued. “Then X-ray came and took another image, and at midnight we got the go-ahead to start her feeding. But at 3 a.m., radiology called us back to tell us that the tube hadn’t been placed properly into her stomach. It had been placed into her lungs. The radiologist had been looking at the previous X-ray, one from earlier in the evening, when he ordered the feeding to begin.”
“So you’ve been feeding her into her lungs?!”
“Yes, but she only got about ninety cc’s. (Like that was going to make me feel better.) She’s coughed up most of it, and we’ve suctioned a lot out, but her fever’s spiked with a new case of pneumonia, so we’re going to send her to ICU for observation, just to be safe.”
Are you fucking kidding me?!
I had been mentally prepared to return to the ICU, accepting that with the scope of her injuries and the nurses’ prior warnings that we might land back there. I just wasn’t expecting it to be under this kind of circumstance. While they prepped her transfer, I emptied her room, once again taking down the pictures of Susan and the kids, the “Do NOT remove hand restraints!” sign, her music, her hair detangler, her glasses, her phone, dumping everything into a large bag. I had hoped that Thanksgiving would have gone a lot differently. I had hoped that the kids would have been able to make their mom smile and see that she wasn’t as scary looking as they had feared. I had hoped that when I said goodbye to this room it would be because we were heading to rehab, not back to the ICU.
In the larger scope of things, all these qualified as little hopes and disappointments. The big hope was that all this wouldn’t become too much of a setback…or worse. And then, trying to keep myself collected, trying to not let on how worried I was, as her bed was being pushed out of the room, she mouthed something to me that I couldn’t understand. I leaned in closer. “What is it, baby?”
She mouthed it to me again, and this time I got it. “How’s the fish?” she asked.
I paused and smiled. “The fish is great. You did an unbelievable job.”
She smiled, satisfied, closed her eyes, and out she went.
They brought her back to the ICU building, to the same floor as before, so there was a familiarity to it. But there were also a lot of differences. When the elevator opened to the lobby, I saw the faces of the other ICU patients’ family members, pale, tired, wiping tears of concern or grief from their eyes. But this wasn’t my face anymore. We were beyond all that now. At least I hoped so.
I thought back to when Susan first came to the ICU; she didn’t even have a name. She was known as Trauma Quebec 4912, the ID the emergency room had given her prior to getting a copy of her driver’s license. Afterward, she would become an actual person, but for some reason, this took a few days. So until then, that’s who she was, Trauma Quebec 4912, a really damaged victim of a car accident who was very close to dying.
Returning to the unit now, she had a name, as well as a face and body that was no longer swollen from trauma and surgery. And she had a voice, too, that allowed her to show her sparkling and funny personality. Nurses who had been with us before, though not happy to see her back in the ICU, marveled at her progress. “You look beautiful!” “You’re doing so well!” “I can’t believe it’s you! You’ve come so far!”
Hearing the “toot toot toot” of the ventilators in nearby rooms and the doctors asking patients in overly loud voices to “Open your eyes” and “Move your toes” reminded me that these nurses spoke the truth. We really had come such a long way…but now we were back.
By the afternoon, Susan’s fever was still high from the latest pneumonia, and she was shivering. However, afraid of raising her body temperature even higher, she was forced to lie there without a blanket, teeth chattering. Through shivers, she told me to go home and be with the kids, insisting she was going to be fine. And so, once again, I was forced to make another heart-wrenching choice between her and the children. It was torturous, but that is how I left her.
Alone and cold on Thanksgiving Day.
days 34 and 35
Well, she beat another one, and we’re out of the ICU again!
Fever is gone, heart is good, lungs are clearing, and her hands are free. We lost about four days of progress, but we’re now moving forward again. For all the many times I’ve heard “Don’t dwell in the past” and “Never look back,” sometimes it’s hard to recognize and appreciate where you are and how far you’ve come until you revisit where you’ve been. I had forgotten that it wasn’t really very long ago that Susan was Trauma Quebec 4912.
On Friday, we hoped that the PEG procedure would go through as previously planned. She was still running a fever, so that was a concern. In addition, because it was a holiday weekend, the hospital was operating on a skeleton crew, and if other traumas came in, Susan would once again be bumped. Fortunately, this wasn’t the case, and she was finally able to get the tube inserted. Other than that, it was a relatively quiet day, no Black Friday shopping, just our own little post-Thanksgiving celebration; we expressed thanks for where we were despite some of the events that got us here.
She was basically back to where she had been the prior Tuesday, and still just as disoriented. She remembered that she had been in a car accident, but thought she had to go back to the ICU because she got hit in the head with a baseball at one of Michael’s games. She looked at me and said, “Can you believe this? Like I needed this on top of everything.” I agreed, even if for a completely different reason.
I’ve tried to understand her disorientation, to get a handle on when it might start to subside. The psychiatrist keeps saying things like, “Well, with a patient who has suffered a brain injury…” I finally stopped her and said, “Doctor, you keep mentioning a brain injury, but I never considered that to be a major factor for her delusions.” She explained that even though the bleeding was relatively minor, it still was a brain injury and it’s hard to say what the ramifications of that will be or the length of time for healing. For whatever reason, perhaps my own naïveté, I had attributed Susan’s delirium and confusion to the drugs or ICU syndrome or sleep deprivation, basically everything but the possibility of brain injury.
Meanwhile, over the past two days, she’s been, well, let’s call it “irritable,” and I’ve found that it’s better if I spend a few hours away from her each day. That way she doesn’t get frustrated that I’m not meeting her needs, and I don’t get fru
strated about not being able to meet her needs, like getting her a cold drink from the nonexistent refrigerator in the corner. Susan has always said that a little distance between us (like the time we have spent apart over summer vacation because she’s gone Back East with the kids and I’ve had to work) either makes a good marriage better or a bad one worse. I consider my time away from the hospital to be the same kind of break, one that ultimately is good for both of us. It also tends to limit comments like, “If you tell me one more time why I need the NG tube, I’m gonna pull it out of my nose and wrap it around your throat!”
And while I concede that there has been a brain injury with some possible residual damage, when she says things like that, it’s a pretty clear indicator that there’s a lot of healthy still there.
the unposted: part 8
In addition to having friends and family constantly checking in to see how I was holding up, they also wanted to know how the kids were. Remarkably, they both seemed to be doing pretty well. The Thanksgiving visit with their mom that didn’t happen was disappointing for them both, especially since they had finally steeled themselves to seeing Susan in the halo and with all of her injuries and often confused mental state. Though of course they were missing their mom and wanted to see her, there was also a little bit of “out of sight, out of mind” going on, which I understood. They also felt guilty thinking about her in the hospital all alone.
Their lives, however, for the most part, were functioning pretty smoothly. Michael’s school had been incredibly supportive, but he didn’t want to be treated differently because of the accident, like being excused from taking finals or anything like that. He was just doing his best to manage things. He had his friends, and soccer season was in full swing; I made a point of trying to get away from the hospital whenever I could to watch him play.
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