On Tuesday, March 13, Violet started to run a low grade fever. When you have a child with a port-a-cath any kind of temperature above normal causes your heart to go into your throat. A bacterial infection is something they warned us about at the time of surgery 8 months ago. This was a risk we were not told about prior to the surgery, but after. We needed to put this device into our child to administer chemotherapy to save her life, but this device also came with a risk of infection that can be fatal.
For all of Tuesday and Wednesday I monitored Violet's temperature. She began to be a bit clingy and whiny which is not her norm. Her temperature never reached the point where I needed to call the hospital on these two days, but Josh and I were very concerned. Violet was showing no other signs of being ill to explain what was going on. Here is the reference sheet from the hospital on monitoring Violet's temperature ...
For all of Tuesday and Wednesday I monitored Violet's temperature. She began to be a bit clingy and whiny which is not her norm. Her temperature never reached the point where I needed to call the hospital on these two days, but Josh and I were very concerned. Violet was showing no other signs of being ill to explain what was going on. Here is the reference sheet from the hospital on monitoring Violet's temperature ...
Thursday came and Violet's temperature was slowly going up. When it reached 100.8 I gave a call to the Oncology on-call doctor. She told me that since Violet's port had not been accessed within the last couple of days and since her last blood tests (2 weeks before) had shown a good ANC, she was not too concerned but we could bring her in to the ER to be safe. I also called and spoke with my step-mom who lovingly assured us to listen to our parental instincts and to bring Violet in if we felt something was not right. So, Josh and I packed everything up and headed to the ER at Seattle Children's Hospital.
Josh told me that he had a bad feeling about the whole thing and asked me how I felt. I told him that I was trusting in God that Violet would be fine. With everything that we have been through, Josh was feeling a bit overwhelmed with "what ifs" going through his mind and I reminded him not to get ahead of himself and that no matter what the outcome was we were going to get through it, like we have with everything else, as a family ... strong in our faith.
ER visits are always unpleasant in our experience. Violet has to have her port accessed for labs and then a slew of staff come through one after the next to poke around and figure out what is going on. There are calls going back and forth between ER staff and Oncology staff because all children that have been through recent cancer treatment and have a port-a-cath have special protocol to follow. It's a long and mostly frustrating process. You are never sure who exactly is in charge and you have to keep track of what things each person tells you because they are all on different pages.
At this point, Violet had an elevated temperature for 3 days (and I couldn't give her any Tylenol until she had blood taken), she was not feeling well and it was very late at night. They couldn't figure out why she was running a temperature so they decided to give her Tylenol and let us take her home. They instructed us to only give Violet Tylenol for the next 24 hours and if the fever came back after that time period to bring her back in.
The following morning, I took Violet's temperature after she woke up and it was back to 100.8. I gave her some Tylenol with her breakfast and began to worry and pray because this was not going away. Violet continued to eat well and play but she would also have many moments of wanting to be held and being whiny. I knew something wasn't right.
Later that day, after Violet's afternoon nap, I took her temperature to see if she needed Tylenol again. I looked at the thermometer and it gave a reading of 95.4! What? That couldn't be right, so I took it again. 95.4! I took mine to make sure it wasn't a faulty thermometer and sure enough my temperature was normal. I took Violet's again ... twice ... and it was the same ... 95.4. Now, as a first time mom, I had no idea what that meant. I only know that my temperature never gets anywhere near that low so I called my mom who is a volunteer EMT.
When I spoke to my mom and told her what was going on, she informed me that Violet's temperature was not normal and to call 911 to have the medics take her temperature and have a look at her. The fire station is directly across the street from us so she said just be safe and have them come - that's what they are there for. So, now feeling that my panic was justified, I called 911.
The medics arrived in minutes and confirmed Violet's low temperature. They did their assessment and concluded that her circulation and everything else looked fine. Plus, Violet showed her usual happy girl self which always leads medical professionals to believe that she is perfectly fine (even when she's not!). They had me call Seattle Children's to see if they wanted them to drive her in since we had just been to the ER the night before. The nurse I spoke with was very dismissive and said with that low of a temperature, if Violet had any other symptoms along with it, she would have her come in, but since the medics say she looks fine, she didn't need to be seen and for me to call the hospital if her temperature went back to the high end.
So, they left and I was confused as to what was going on with my little girl.
All seemed normal until I tried to put Violet to bed that night. She started crying and that turned into screaming. Nothing we did would console her. It went on for over 2 hours. But, no fever! Desperate, I called my poor mom at 12:30 in the morning. Starting to cry myself from the frustration of knowing something was going on but no one was figuring it out and from the lack of sleep, I asked her if she had any idea what it could be. Was there something I should be doing that I missed? She was worried too and assured me that I was doing everything I could. She said if Violet continued to cry that I should just bring her back to the ER regardless of her temperature not being back up.
Josh decided that we should take her for a ride in the car to see if that would calm her down. It did. I think she completely wore herself out and she fell right to sleep. It was now around 1 AM. Exhausted, we drove around for a bit to make sure she feel deep asleep before we disturbed her. Josh and I got to sleep around 2 AM.
When we woke up in the morning, it felt like I had only slept for a couple of hours. I couldn't believe it when Josh said it was 11 AM! I got up and went to turn my phone on from silent mode and that's when I saw the missed calls from Seattle Children's Hospital ... all 11 of them within the last 3 hours. And, there went my heart up into my throat again.
to be continued ...
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