Today was unlike anything we’ve experienced before since Grandma was diagnosed. Grandma and I left the house this morning for the Infusion Center at St. Mary’s. Grandma was going to be given two units of blood. When we arrived, we checked in and were told that Grandma had a room with a recliner. We both paused and Grandma said, “I wanted to have a bed. We were told I was going to have a bed.” The woman at the desk said, “Well, we have a room with a bed, but it needs to be cleaned. We can just start you in the recliner and you can move to the bed later if you want.” Grandma and I started down the hall to her bed-less room knowing full well that she wouldn’t have a bed during her visit.
When we reached the room, the nurse, Barbara, got Grandma seated and then started her IV. She stuck Grandma twice in one arm without hitting a vein and then moved to the other arm where she finally got it right. At this point, she administered some Benadryl via IV and asked us about Tylenol. She said there was a pill and a liquid form. I spoke up on Grandma’s behalf and said, “The liquid versions of medicine burn her mouth. If there is a pill version, we should probably try that.” The nurse blinked at me before turning to Grandma saying, “You probably want the liquid form, don’t you?” Grandma nodded and told me this evening that at that point she just wanted to get things moving. She didn’t realize that it meant she would be burning her mouth with another liquid medicine. The nurse came into the room with the liquid Tylenol and again I said, “Ma’am, she would do much better with a pill form. Liquid forms of medicine are very irritating and uncomfortable for her to take. Can we please try the pill form?” To which she replied, “This is Tylenol, Sir. It’s meant to soothe, not cause pain.” She handed the small cup to Grandma. Grandma took it and then proceeded to start coughing and gagging saying, “It burns! It burns!”
Shortly after that, Barbara asked what medications Grandma was on. I started listing them off and she said, “I don’t have a photographic memory. Here, write them down.” She shoved the chart at me and motioned with a pen for me to start writing. I pulled up the list I had of Grandma’s medications on my phone and copied them over to the chart even though I was pretty sure that was something the nurse should have done. When I was done, I handed the chart back to the nurse and she looked over the list.
“OraMagic? Don’t you mean, Mary’s Magic?” she asked.
“No, ma’am. The Cancer Center told us about both Mary’s Magic and OraMagic, but we chose to go with OraMagic.”
“No, you’re wrong. It’s Mary’s Magic.”
“No. I’m not. It’s OraMagic.”
“Well, why don’t you just go get the medications.” So, I texted Robyn and asked her to bring them up to the hospital when she took her lunch break from work. Then, Barbara asked me if I wanted to turn my chair around to watch the TV. “No. I don’t really want to watch TV right now.”
“Are you sure? You can turn your chair around to watch TV.”
“I’m sure. I’m good.”
“You’re good? I’m good. We’re all good.”
By this time the disdain was just oozing from her voice. She was condescending and argumentative and I got the distinct impression that she was doing things the opposite way I was suggesting simply to be difficult. I was so aggravated and it was around this time that I noticed Grandma had started squirming in her seat much like she did at the Cancer Center. Luckily, Robyn walked through the door with Grandma’s medicine in hand. I pulled out the Xanax and gave one to Grandma. The Charge Nurse came in to check on Grandma at that time and Robyn started talking to her about how Grandma normally takes her medicine, much like I did with Barbara when we first arrived. Suddenly, Barbara turned around to face Robyn and said, “Who are you? You must be Nick’s mom.” To which Robyn calmly replied, “No, I’m his girlfriend,” then she continued her conversation with the charge nurse. Eventually she said, “I thought Charlotte was supposed to be in a room with a bed.” Barbara jumped into the conversation and said, “We’ve already been over that. Charlotte chose a recliner over a bed.” I shot Robyn a look and she replied with one of her own that said, “I know she’s not telling the truth.”
I continued giving Grandma her regular medications. When I got to giving her the liquid Loritab, the charge nurse said, “Oh, don’t give her that just yet.”
“Because we are going to give her morphine by IV.” Barbara had called Dr. Ballou about Grandma saying she was in a lot of pain and needed something stronger than what she was currently on. Dr. Ballou prescribed it on the word of the nurse. Grandma didn’t even have a chance to decline it. They hadn’t consulted with her about anything she wanted.
Not too long after that, Robyn had to head back to work. Barbara hung the first unit of blood and left the room. Every once in a while, she would step in to check Grandma’s vitals and document any changes on the chart, but she didn’t speak a word until her shift was over and she was letting us know that she was off work and someone else would be checking in on us. While Grandma was receiving her second unit of blood, I received a phone call from Dr. Fraizer’s office at the Cancer Center. Robin, the front desk attendant called and sounded somewhat frantic.
“Is Charlotte alright? We got a call saying she needed stronger pain medication and that she was in BAD shape.”
“Well, we’re here at the Infusion Center getting her blood transfusion, but she’s resting comfortably right now. Who told you she was in ‘bad’ shape?”
“One of the nurses there. She said that Charlotte was in a lot of pain, not able to get her pills down and she wasn’t sure how we allowed her to get so bad. Dr. Frazier is out checking on a patient at Deaconness, but you could meet him if you want the new prescription now.”
“I don’t think that is necessary today. She is tolerating her pain meds well. Yes, she’s in pain, but she is able to get her pills down.”
“Oh. Well, I thought it was strange that they were calling. And since I knew you have taken care of her medications since the beginning of her treatments, I wanted to call you first. We can take a look at Charlotte when you are here on Thursday.” The Cancer Center staff has been wonderful. They are caring and attentive and Robin sounded frightened for Grandma’s well-being. After the day we were having, it was nice to have the reassurance that the Cancer Center staff thought I was doing a good job as her caregiver.
Around 5:oo p.m., Robyn arrived. We sat for a few minutes when the medical assistant walked in to start Grandma’s discharge process. She disconnected Grandma from her IV and then said, “In about 20 minutes, I’m going to come back to check your vitals and then, you’ll be on your way.” Grandma immediately started shifting in the seat and saying, “Is it time to go?” The medical assistant came back to discharge us and we were on our way home.
Once we got home, I realized they sent us home without any after care instructions and didn’t tell us what to expect in the 24-48 hours following transfusion. Luckily, I have a couple of friends who have been through it before and Robyn has a friend who is a phlebotomist. So, we used our resources and found out that there are a handful of symptoms that could indicate problems.
We got Grandma settled in at home and I called Linda with medical updates. She said she thought we were treated unfairly. Then, she started asking a lot of questions about why Grandma was getting blood. I asked her if she was reading the website and she responded by saying that she doesn’t visit the site because her daughter says she caught a computer virus when reading it, which isn’t possible because of the precautions I’ve taken when building the site. So, Linda doesn’t visit the site. I feel really disrespected. It seems as though Grandma’s own children aren’t interested in knowing what she is going through day-to-day. After everything we’ve been through, all they have to do is visit the site to find out what’s going on with Grandma. It’s here for them and tonight, I found out that they are not only not visiting it, but that they are also telling other people that they will catch a virus if they visit the site. When I started this site, I started it for two main reasons. #1 to document her journey for her kids to be able to keep up with all her doctor’s visits and daily activities and #2 for other people going through this process. I thought that perhaps something we experience might be able to help others down the road.