Poor Treatment: Part 1

ICU stands for Intensive Care Unit. People get transferred to this department from the ER if they are stable enough, or they come to this department post-surgery. My wife, Candace, has ended up in ICU for both of these reasons at different times. 

Risks at ICU
Sanitation is so important in ICU. This is the place where patients can get sick the fastest, and the easiest, if the medical staff is not careful. Since Candace is so immunocompromised, it’s always extremely scary when we see someone sneeze or have to touch something in the room (especially the remote and call button). We both always make sure the medical staff is wearing gloves. If Candace was to get an infection, it could be deadly.

ICU Can be Dangerous 
In an instance when Candace was in a Myasthenic Crisis, there was a nurse she had during the day that didn’t give her medication to her and then LIED about it. This medication she needed was time sensitive. It had to be given every two hours, otherwise we would have problems with her airway and her ability to use her arms, use the bathroom, and chew and swallow. Unfortunately I had to work on this day. We weren’t married yet and I didn’t have FMLA, so I had to be very careful. Before I left the hospital the night before, I gave specific instructions for the current nurse as well as for the next nurse after shift change. I wrote them down. I did my best to make sure that these instructions would be passed onto the next nurse. 

Well, that didn’t happen. While I was at work, I was able to text Candace (to save her voice and help to prevent weakness) and it all started when she said that her medication was due and that her nurse hadn’t come in to give it to her yet. I told her to hang on a few more minutes, and said “maybe he’s busy.” Because yea, it happens. Thirty minutes had gone by and Candace told me that she still hadn’t got her medication yet.

I didn’t have any way of contacting the nurse’s station where Candace was to be able to ask what was going on. Candace let me know that she pressed her call button several times. A couple different CNA’s came in to acknowledge it and said they were going to get her nurse each time. We weren’t sure where the disconnect was: with her nurse or with the people saying they were going to get him so she could get her medication.

So the next thing I knew (15 minutes after the last text I got from Candace), I had gotten a phone call. I answered because I had a fear that it was the hospital, and in fact it was. It was her nurse telling me that her airway had collapsed and that the doctor was doing a jaw thrust on her currently. 

I went out of my office into a more private area, and asked the nurse if someone had at least put the medication in her mouth to melt for her to try and swallow. He said yes. I verified that this guy was her designated nurse, and I went off on him. 

I asked him why he didn’t give her time sensitive medication to her on time and where he had been every time she pushed her call button or when someone supposedly let him know Candace needed her medication. All I heard from him were excuses. He didn’t have any emergencies come up, because I asked him: No stroke alert, no flatline, no new patients. Nothing. I told him I would be there within a half an hour and then I told my boss I had to go and ran out of there with tears streaming down my face.

When I finally got to the hospital, I ran inside (more like powerwalked) and went to ICU where Candace was. I went into her room and as soon as she saw me she burst into tears. I cried a little more too. She looked a lot better. Her medication had kicked in and her MG symptoms were gone. Her nurse and another nurse were in the room with her. I verified who her nurse was, and gave him the dirtiest look I could give him. I had to be careful because I needed to make sure we would still get the things we needed until shift change.

The doctor came in about twenty minutes after I showed up, and he was looking for me. Just the day before, Candace had another airway closure and she had a different nurse, but he was one of those that responded. I was there for that one. I was able to guide the medical team in saving her. I had talked with him inside the room after things had calmed down with Candace and had explained to him how her MG presents itself and what to look for and what the best thing to do to save her was. 

He had come in the next day to tell me thank you for talking about and sharing that information with him. He said that when her nurse had called him in and they were going to call a stroke alert, he stopped them and had said that this is how her MG presents itself, exactly like I said it would. It made me feel good. I wasn’t looking for brownie points, I was just doing my best to keep Candace safe while I wasn’t with her. 

If it had been me in the room with her, she would have gotten her medication and her airway might not have collapsed. There have been times where I have been with her and she was having severe MG symptoms while she was in the hospital, and I have had to get into her bag where her meds are usually kept, and give her one of those because the staff would just not bring it to her quickly enough. 

They just didn’t get it. 

They didn’t understand. 

I didn’t care that it wasn’t something I wasn’t “allowed” to do. Her symptoms hit fast and hard and everything can go downhill in a matter of minutes and I did what I had to do.

The sickening part of this whole thing was that when the doctor had come in to stop the stroke alert and did a jaw thrust, her nurse had LIED about what happened. 

She could hear and see everything still.

Candace had told me after I got there that once her medication kicked in, her nurse had whispered “I’m sorry” in her ear, and when he was asked by the doctor what happened, he had said “nobody came and got me” and “she never used her call button”. When Candace told me this, I was infuriated. So much for feeling safe in the #1 hospital in Colorado! How can he sleep at night knowing that one of his patients could have DIED? I was beside myself with anger. 

From there we talked to a Chaplain the same day, and told her everything that had happened. It was her idea to get the Charge Nurse involved. When the Charge Nurse came into Candace’s room, we told her everything that had happened and that it was completely unacceptable. I told her how he lied and put Candace’s life at risk. The Charge Nurse was completely shocked and said that she would handle it. One of the CNA’s that knew about the situation came in to check on Candace later on that same day and Candace told the CNA that she had complained. Much to our surprise, the CNA had said, “I’m glad you did that because it’s not the first time it has happened.” 

I wasn’t there for the shift change when this nurse had taken over for the night nurse, and I was upset that I wasn’t, especially with what had happened to her while I was at work. Shift Change is scary, especially when I am not there for it. When I’ve had to leave Candace overnight, I usually have waited until the nighttime shift change, which is 7:30 pm. But it usually takes longer than that, sometimes up to an hour before the off going and ongoing nurse comes into the room together. That is when I usually give my spiel about her symptoms, what to look for, and what to do. I make sure that information gets passed on.

I learned my lesson that day. I made sure I had the nurse’s station number and the room number that Candace was in whenever I left the hospital, so that I could call over and make sure she was getting her medication if Candace ran into more issues. After this incident, we knew that we had to do something for me to be able to stay with her all the time, so that I could keep her safe. After this incident we got married a few months later. We didn’t change our wedding date just to get the FMLA, but as soon as I got back from our Vegas wedding, the first thing I did was submit FMLA documentation to HR.

There was one more instance on a separate hospital visit that I actually submitted a formal complaint to the hospital for. During this visit, we went to the ER for SPS. Candace was having full body spasms and her medication wasn’t helping. I drove her to the hospital as fast as I was able to, and an EMT had to carry her out of the car and put her in a wheelchair (which was almost broken because that’s how bad her spasms were).

Eventually when she was moved into a room to stay in overnight to be monitored, we were blessed with a nurse that was also a part of the LGBTQ community, and we all bonded instantly. I’m not saying we got preferential treatment, but the atmosphere was a lot more relaxed. She listened to what we had to say and what to look out for and everything. She is one of my favorite nurses that Candace has had thus far.

Candace was doing fine after she moved to an overnight room until about 11pm, when a Respiratory Therapist came in and tried to talk to Candace. We were both asleep but I had woken when I heard him come in. One of the things that we had told Candace’s nurse was to try and not startle her. When she gets startled, it could trigger a whole body spasms, and it can get bad quickly.

There was a note on Candace’s door that said to check in with the nurse before entering the room. This guy had come into the room without doing that. He tried to talk to her, and she had earplugs in her ears so that she could sleep amid all the beeping. He said her name and she didn’t respond. I sat up and tried to tell him not to startle her and that she had earplugs in, but it was too late. 

He yelled her name at the top of his lungs and she was startled awake. I stood up and got in his face and said why did you do that? Didn’t you check in with her nurse before you came in here? He started making excuses that she wasn’t responding and everything, and I said she has earplugs in her ears! 

The reason why he was in there to begin with was to fit her for a breathing machine. I told him that the hospital machine wouldn’t work because it doesn’t self adjust like the one she has at home. 

I told him to get out. 

I was so angry.

Candace’s nurse came in the room in the middle of this altercation and she started getting upset with him too. When he left, Candace started having really bad spasms again. Her nurse had gotten her medication to her quickly, but we needed to wait for it to kick in. So it was a brutal hour or so. Before I even thought to do it, Candace’s nurse came in and said that she was going to file a complaint with his supervisor. That’s when I said I would like to file a complaint also. She said no problem I will make that happen.

The next morning, someone from the hospital came in and asked what had happened. She was one of the people who dealt with complaints. So I told her what happened and she was a little shocked too. I am not even sure what happened from that point. I don’t know if he got pulled into the office for a conversation. I don’t know if he got in trouble. 

These are the reasons why nobody should be in the hospital by themselves, and should have an advocate or someone that knows how to take care of him/her with them. ESPECIALLY if they have complicated cases. Things like this happen, and lives can be lost or permanently damaged for the rest of their life.

2 thoughts on “Poor Treatment: Part 1

  1. I’m so sorry you both have to go through this, but thank God she had you her guardian angel to protect her. Bless you both. I love reading your blog?

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  2. I completely agree with you. Always have someone with you who will be your voice regarding all your health concerns. It is a really scary place this world has become. It’s alarming, sad, and brings me to an on guard attitude when it comes to managing my health care. Thanks for sharing your story. The more people know, the better off they will be.

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