My mom always told me to go with my gut feeling. When I was a child I never really understood what that meant until I realized that gut feeling is God guiding me to make smart decisions. My mom also told me that a closed mouth doesn’t get fed, so speak up if you don’t agree or understand something. And those two words of wisdom I relied on during our last hospital stay.
Mallorie had to go to the ER on Monday because she spiked a fever of 101.3. For those of you who are not familiar with how this whole cancer thing works, you are not supposed to give Tylenol to a cancer patient, at least that is how it is for kids anyway, because it could mask an infection by lowering a fever. It has to do with blood counts and immune system. Well, someone gave permission for her to take Tylenol at school when she started feeling icky. She made it through the day, being a normal kid, running, playing and studying with one of her friends. When I picked her up from her friends house, she said she didn’t feel very well. I took her temperature when we got home at it read 99.1. Ok ~ now we have to monitor her. That was at 9pm, by 10:15pm, we were headed to the ER to get lab work done to see what her counts were.
Once we got to the ER, Mallorie immediately felt uneasy because she knew they were going to access her port. (A port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein.) She has this so she can receive her treatments and have blood work done. Accessing her port is so routine, but she just felt really weird about how the access was going to go. She got herself so worked up, I actually talked to the ER team about her anxiety. The nurse reassured me and Mallorie that she knew what she was doing and not to worry. Since having her port accessed is pretty much a normal thing, I didn’t think to much about it, they are professionals, right? Mallorie, on the other hand, was still unsure, of the nurses qualifications. And of course, Miss Mallorie’s instincts were spot on. It was a hit and miss.
As the nurse began to sterilize her port location, on the skin, she began to cry. She was so nervous and afraid. I thought she was overreacting. The nurse prepared the needle for the access and announced here comes the “little” poke. (Poke is the fancy, medical term used on the Pediatric floors to help calm the little patients down.) Ready, 1, 2, 3….poke. Mallorie knew right away something wasn’t right. The nurse drew back on the syringe to retrieve blood and nothing would come out. I just lowered my head. Then when the nurse tried to push fluid into the port, Mallorie started panicking, shouting to stop, it was hurting. A port is not supposed to hurt, period. The nurse quickly de-accessed the port, which allowed Mallorie to breath a bit of relief. All I could think was, “Well crap, this is going to be rougher than I originally thought.” Now what? A second nurse came in and tried again to access her. Nope, same thing happened. At this point, her port access site was red and swollen. It was just down right miserable for Mallorie. Within the hour, we were up on the PED’s floor.
By this time it was 1am and we were both sleepy. We knew that we had about a three to four day stay. Of course, we were welcomed with big smiles and laughter when we arrived to our “home away from home.” I think Mallorie was glad to see familiar faces. We got settled to our room, hoping to be heading to bed. Wish I could say that was the case. About an hour of paper work and checking vitals, a team of doctors came into our room. They were wanting to get a health history and get up to speed on why we came in. I knew from the moment I spoke to the resident doctor that there was going to be an issue. I had not remembered dealing with this doctor in the past, but I could tell she has, let’s just say, proud of herself. I am usually pretty easy going and respect the decisions made for Mallorie’s care. I have always thought, if the doctor says something needs to be done, then we should do it. The doctor stated that they would need to try to access her port again to get blood cultures to make sure there is no infection in the line of the port. I said ok. Then I looked over at Mallorie and my heart just broke into pieces.
After the doctor left, Mallorie was in tears, crying, telling me how bad it hurt and she just wanted to go to bed. She said she would rather have an IV to get fluids and medicine instead of through her port. Something happens inside you when you see your child begging for something not to happen, especially after you have watched them put up a struggle for so long. Right now, Mallorie has little control over decisions with her body because of cancer. She had been poked enough for the night. Getting her port accessed to get blood for cultures could wait. Let’s just give her an IV and let her rest. So that is what I told the nurse. With a wink and a smile, she headed to tell the doctor our wishes.
About 45 minutes went by and the doctor came back in, very erupt and short. She started telling me about how important it was to access her port. About how they can’t treat her properly if they don’t get those cultures. The way the doctor came at me struck a nerve I have had suppressed for years. (I call that nerve crazy Dee Dee.) I felt this instant anger come over my body. I told the doctor that this wasn’t our first rodeo and I knew that we would need to access her port to get blood cultures. I told her accessing her port at this very moment is not a life or death situation and that Mallorie just needs a break from the trauma and fear of being accessed. And after she and I both got a bit of rest, we could try again (By this time it is like 3am.) so for now let’s just get an IV going and regroup in a few hours. Then I reminded her that down in the ER they tried to access her twice, so why would we try again? Shouldn’t we get the surgeon involved? Could there be something wrong with the port itself? Her response was that the nurses on the PEDS floor are better at doing port accesses. Really? I came back with, “So your telling me the care in the pediatric ER is not as good as the care on the PEDS floor? That doesn’t make sense to me? If the nurses in the ER don’t know how to access a port, then why wasn’t someone, who knew how to do it properly, called in? You wouldn’t have a brain surgeon treat someone for a heart attacked, right? So why wasn’t someone in oncology called in?” With a huff, she left the room. Mallorie started crying again, begging me to not let them access her. I told her they would not access her tonight. She drifted to sleep. I paced the floor.
About 30 minutes later, the nurse team came in to start her IV. I was all prepped and ready to be by her bedside, when the doctor came back in with a phone in her hand. She said her attending doctor was on the phone and wanted to speak to me about my decision to not access right now. Oh boy, someone is about to get throat punched. I tried to talk to the attending, while Mallorie has getting her IV, but due to her crying and the commotion, I couldn’t hear, so I stepped into the hallway. The attending, again, started telling me it was so important to get that port accessed ~ right now. And it would be in my daughter’s best interest to do so. My daughter’s best interest? Are you kidding me? Do you have any idea what is in the best interest of my kid? Have you been there by her, watching her cry and fight? No, you haven’t because you (doctors) step in for three minutes a day, usually while she is sleeping, listen to her heartbeat then bark out orders. How dare you tell me what is best for my daughter. We have been in the hospital seven times now for cancer issues, five of them have been for some kind of infection, usually in her port. I think I know what needs to be done, what is critical, and what can wait. And allowing my daughter to make her own decisions for her body whenever possible, to me, is in her best interest. I told the doctor that if they wanted to access her port, they are going to put her under sedation. That way she has no fear or anxiety about it. And you can poke and examine the area without her feeling it. To me, anxiety and fear are major players in dealing with illness, especially one that is life-threating and long term. She began to tell me that putting her under would take the intensive care team. My response, “So?”
Now it is about 4:30am. IV has been placed and Mallorie is sleeping. Sedation has been called and we are on their schedule for mid morning. When the morning rotation started, a new team of doctors were on the floor. I am very familiar with them and happy with the care they have provided Mallorie. They could not understand why the “night crew” resident was so persistent in getting Mallorie accessed. They encouraged my decision and said they completely understood where I was coming from and apologized for all the drama we had to deal with over night. They made sure Mallorie’s wishes were met and went above and beyond to make sure she had no pain. By 11am we were on the PEDs sedation floor, Mallorie was given medicine to completely relax her (she really had no idea what was going on) and within 30 seconds, the team had her accessed, blood drawn and cultures complete. When Mallorie came out of the mild sedation, she asked me, “Did they access my port yet?” I laughed. Then she looked at me and said, “Thank you mom for standing up for me. I was really scared.” I smiled and told her that’s my job to look out for her and if it is in her best interest, I will always go with what she wants. Then we both drifted off to dreamland.
I have learned so much through Mallorie’s journey. What to appreciate in life, seriously not sweating the small stuff, hugs really are priceless, and little things matter. I discovered I have to be proactive and gather information about her illness on my own. I ask questions and if I don’t understand, I ask again. I read up on medicines and side effects. I attend seminars and ask other resources for help. Knowledge is power. I have found I am the voice of my daughter. I am her advocate. I use my voice to inform others about childhood cancer. My voice shouts that God really is in control in all situations. I want my voice to bring comfort to others. And I speak up for my child. Just because a doctor says that something needs to be done doesn’t mean it is true. I go with my gut and ask for guidance from the great physician. After the blood cultures had time to grow, it was found that there was actually no infection in her port line or blood. The diagnoses was neutropenic fever, which is caused by neutropenia. Neutropenia is a development of a fever, often with other signs of infection, in a patient with neutropenia, an abnormally low number neutrophil granulocytes (a type of white blood cell) in the blood. It is very common in cancer patients because of chemo treatments.
I am so thankful I listened to my gut on this one.