Friday, April 7, 2017

When Blood Pressure Ruins Your Lunch Date

Jeff had to be at the doctor early today for a check up appointment following his surgery. His appointment was at 10:30. (When it takes at least 2 hours to get someone out of bed and ready to go, believe me, 10:30 am is early.)

Here's the good news. When I got him into his chair at 8 am this morning, he was feeling great. He couldn't believe it! But about 30 minutes later, his body was struggling to keep the blood pressure up. It was staying steady at 87/50. So he took half of one of his blood pressure pills (the one that raises it). By the time we left at 9:45, he was at 116/70. Perfection!

We made it to the doctor's office just fine. We were actually looking forward to this appointment. The office was 15 miles from our house. But it was only 1 mile from the new Chick-Fil-A that just opened in Vegas!! We hadn't had the chicken goodness in over 2 years since we moved here from CA. So we had a lunch date planned.

The nurse called us back into a room. She took his vitals, and told us his blood pressure was 135/90. Jeff and I looked at each other with furrowed brows. "That's a little high for him," I said quietly, more to myself than the nurse. As soon as she left the room, Jeff said, "My body feels tingly."

Something wasn't right.

I jumped up and lifted up his shirt. His skin was blotchy. I could see the redness creeping up his neck as well. This meant his blood pressure was continuing to climb.

I gently shook his catheter tube. Sometimes it can get kinked and cause a rise in blood pressure. But it was flowing fine. I checked his colostomy. All fine there too.

Something else was going on.

"Get our blood pressure cuff," Jeff said. I hadn't brought it in with us. It was in our emergency backpack in the van. I didn't want to leave him, but I didn't have a choice. I needed that bag. I hadn't ever needed it at the doctor's office before.

I walked briskly out of the office, smiled at the receptionist, then ran to the car. I was back at Jeff's side within a minute.

His blood pressure was now reading 150/100.

"You're okay," I said calmly, my face close to his.

"Do you want to flush the catheter? Just in case?" I asked.

"Can you do it in the chair?" he asked me.

I pushed the leg of his sweat pants up and wriggled the fabric up his thigh to expose where the catheter and leg bag connected. I had just enough room.

"Yes," I said quickly.

I pulled a flush kit and saline from the emergency bag and gently pushed the saline into the catheter. It went it without a problem. We definitely were not dealing with a clogged catheter.

I kept taking his blood pressure and it was ranging from 138/90 to 155/105.

"Do we have a nifedipine?" Jeff asked. That's his other blood pressure medication. The one that makes it go down.

I'd never had to give him both in one day. But he was struggling. His face was red, and I could hear in his voice he was doing his best not to  panic.

I fumbled for the pill bottle. My hands were shaking. "Here it is," I said dumping it into my hand.

"Give it to me," he said.

I did.

"If the doctor doesn't come in in 5 minutes, we're going to have to leave."

"Do you think we should go to the ER?" I asked. "There's a hospital right across the street," I reminded him.

He thought for a few seconds. We both did.

He shook his head, "No. I just want to get home."

I thought the same thing. We had everything we needed there to handle something like this.

We spent a few more tense minutes with me checking his blood pressure and making sure his pants weren't too tight (another potential cause of high blood pressure in quads).

And just as we were about to call it quits, the doctor and two assistants walked into the room.

The blood pressure cuff had just taken another reading. This time it was 187/130. I didn't even want to say the numbers out loud. I knew they would terrify Jeff.

But I couldn't hide something like that.

I quietly told him the reading and followed it with, "That can't be right." More hoping than anything.

"I don't mean to be disrespectful, but I'm not feeling well," Jeff said to the surgeon who was immediately concerned. We explained the blood pressure issue. How it wasn't related to the surgery, but to his injury. We made it clear we were able to handle it, but we needed to be on our way.


The doctor was accommodating. It had to have been the fasted follow-up visit in the history.

Before long I was loading Jeff into the van. I chucked my purse and the emergency backpack into the passenger seat, then I climbed to the back and sat next to Jeff in the cramped quarters. I hit the blood pressure monitor button again. I was scared of what it would read. My mouth was dry.

Jeff said he was starting to feel a little better.

His blood pressure was down to 150/100 again. Still too high, but better than the last reading.

"Do you want the nitro paste?" I asked. I'd already gotten it out of the backpack and was ready to apply it.

He looked at me and said, "Let's just go. I can manage. I'll be fine."

Once we finally got to the freeway, I was relieved it was relatively open. I drove 75-80 mph the whole way home.

My eyes kept darting to the rear-view mirror to check Jeff.

"Are you ok?"

"I'm good," came his answers. Now it was his turn to keep me calm so I could get us home safely.

I backed into the driveway and got Jeff out as quickly as I could. I left everything else in the van. We made our way to the bedroom. I took his blood pressure again.

I don't remember what it was, but I remember it was close enough to normal for us both to let out a huge sigh.

I laid back in exhaustion on the ottoman while Jeff reclined in his chair.

My god, it felt like we'd just been through the wringer.

What caused this wild blood pressure fluctuation, you ask? It probably started with the medication Jeff took to raise his BP before we left for the doctor. It's just that it doesn't usually raise it that high. Or maybe it was because he was feeling bloated from eating Pop Tarts the night before (sounds silly, but something like that could definitely contribute to this). I also am realizing we should probably re-think our eating habits at this point.

Either way, before Jeff's injury, I always thought blood pressure issues were something people with heart problems dealt with. But it turns out that people with spinal cord injuries deal with them as well.

Just another day in our never-a-dull-moment life.

Here's the latest blood pressure reading I took:

 Ahhhh, that's more like it.

And here's the face of a worried, worn out wife.

Who's also a little bummed that she missed out on Chick-Fil-A today.

Here's to a non-eventful weekend!!

Thursday, March 30, 2017

That's Why My Wife is Here!: Why Family Caregivers Matter

Jeff recently had surgery, and we spent a couple days at a local hospital during his initial healing phase. Overall we had a very positive experience. The staff was great, and everything went as smoothly as it could go for a high-level quadriplegic on a vent.

I always stay with Jeff when he's an inpatient. His hospital stays are never a time for me to "get away" or to "let someone else take care of him." I have my own cot that I bring and set up next to his bed. Of course I always ask politely if I can stay with him. But I never take No for an answer.

I want to share an incident to highlight why I stay with Jeff whenever he is in the hospital. It happened while he was being transferred from the transport gurney to his hospital bed in the room he stayed in.

A little background first. After Jeff's surgery, he was able to be put back onto his own home ventilator. The Respiratory Supervisor came out to talk to me after the surgery to let me know Jeff was back on his own vent because Jeff had requested it and that's how he felt most comfortable. The supervisor also assured me that Jeff would be able to remain on his own vent during his stay. This was hugely good news as not all hospitals allow this. For us, this meant Jeff would have less anxiety because at this point his vent is kind of like a trusted security blanket. It also meant that the risk of ventilator-acquired pneumonia was reduced. It's not uncommon for Jeff to develop pneumonia after a hospital visit where he's been on multiple vents. 

So when a bed in ICU finally opened up, a team of nurses and staff pushed Jeff in his recovery bed up to his new room. I followed quietly behind.

When we got to the room, we were met with more nurses and staff who were preparing to transfer Jeff from the transport gurney to his bed. In total, there were about 5 or 6 people all working to make sense of wires, tubes, and the mountain of blankets Jeff was trying to keep warm under. 

His vent was tucked up snugly in the transport gurney leaning against one of the rails. It would have to be moved with him simultaneously during the bed transfer. As nurses continued to prepare for the transfer, I walked to the foot of his bed and asked, "Would you like me to help with the vent during the transfer?" There was no respiratory therapist in the room. And considering that I am in charge of this particular vent at home, I figured I was the most qualified individual in the room to handle it. 

One of the nurses turned around and said to me, "Ma'am, you can step aside and wait over there. We can handle everything."

I made eye contact with Jeff, and we shared a knowing look. This is a familiar scenario. We've been at this crossroads before, so I wasn't all that surprised to be pushed aside. As I made my way to the "over there," Jeff said to the nurse, "Well my wife handles everything at home." 

Everyone ignored him.

I nervously watched the scene unfold.

As the nurses and the assistants were all tightening their grips on the sheet in preparation for the transfer, I could see that the nurse who was now in charge of moving the vent was struggling. She gave out an "Oomph," as she tested the weight of the machine. The vent is about the size of a thick laptop, and weighs about 15 pounds. Not too heavy to lift, but still not a good idea to try to lift while transferring a patient at the same time. A dropped vent is the second-to-last thing I needed (second only to a dropped husband).

I could no longer stay put. I abandoned my time-out circle and made my way to the struggling nurse who seemed pretty grateful for my approach. "Will it reach?" she asked me, as she lifted the vent onto the waiting bed. And just as I was in the midst of explaining that the circuit wasn't long enough - that we would need to put a table at the other side of the empty bed, and while everyone transferred Jeff to the bed, I could simultaneously transfer the vent to the table - I heard a muted POP, and the vent began to alarm.

My eyes shot to Jeff's. "Are you okay?" I asked quickly. He waited to see if the vent would give him another breath. It did, but it was weak. He shook his head. Something's wrong he mouthed to me. My eyes went to his trach. The circuit was still connected. So I quickly traced the tube to where it was attached to the vent. It looked good. But then I noticed the problem. Next to the air output are three small ports that sensor tubings plug into. One of the tubes had become disconnected. "It's one of the small ones, Jeff" I said aloud so he would know I'd found the problem. I quickly reconnected the tube. The vent alarm ceased, and the machine began giving breaths as normal.

"Are you okay now?" I asked looking at my husband.

I got my answer in the form of a statement hurled directed at the nurse who told me to step aside. 

"That's why my wife is here," Jeff said forcefully.

No one said anything. 

After a second or two, everyone just kept moving forward with the transfer. This time I was allowed to manage the vent.

The transfer went smoothly. Honestly, the rest of the stay went smoothly. The staff was friendly and, despite the transfer incident, was otherwise accepting of my role in Jeff's care.

I'm not sharing this incident to call out the nurse who pushed me aside. I fully understand why she asked me to do so. The last thing these people need is a meddling, know-it-all relative all up in their business.

But Jeff's care IS my business. 

Thus far in our spinal cord injury journey, I have racked up over 1,000 consecutive days of caring for my husband. No weekends off. No vacation days. At home I am my husband's doctor, nurse, respiratory therapist, physical therapist, psychologist, and case manager. I can tell what his oxygen level is by the way his voice sounds quicker than a pulse ox can pick it up. I know what areas of his skin should be red and what areas shouldn't be. I have changed a malfunctioning ventilator circuit at 2am in under 1 minute. I know the symptoms of Autonomic Dysreflexia and know exactly what to do to alleviate them - something most medical professionals are not familiar with.

So I am sharing this incident to show that family caregivers are vital pieces of a patient's care team. Every day we are on the front lines of care. And because we aren't bound by the rules and regulations that medical professionals work under (i.e, a nurse isn't allowed to touch a ventilator, and a respiratory therapist can't change a catheter, etc.) our knowledge is both deep and vast. 

Our patient list is small. For many it's just one person. But we know that person's needs oftentimes better than we know our own.

We care for people we love. We pour ourselves into our roles - even on those crappy days where we don't want to be caregivers. Most of us didn't choose this role. And yet we work hard to hone our skills and build up confidence in our ability to provide exceptional care.

We are family caregivers.

I'm a family caregiver. 

And it's why I stay with my husband while he's in the hospital. 

Like he said, it's why I'm here.