December 14, 2024
On Tuesday evening, 12/10, David’s temperature started to spike again. We went back and forth with acetaminophen for a few hours but did not call the oncologist on call. David and I both felt like this was a repeat of what we have been battling for the weeks following the liver Y-90 as well as the ones following the chemo. Still, it is concerning because all of the same symptoms are what you watch for in sepsis as well.
On Wednesday, 12/11 and Thursday, 12/12, his temp went up over 100.7 and still he did not want me to call. We managed to control it again and he slept through the night but woke up soaking wet from the sweat of the breaking fever. Thursday morning, we decided to send a message through the portal to Dr. B just to get his take on what is going on. David got a call from one of the nurses and she asked him about any new symptoms (nothing outside the usual extreme fatigue and temp spikes). He told him Dr. B wanted him to come in on Friday to have blood work to see what we were dealing with, and he called in a prescription for an antibiotic to start (Augmentin). I went and picked up the prescription so David could start on it right away. I had an eye appointment in Atlanta for a contact fitting on Friday morning and I had already rescheduled this appointment a few times due to various cancer issues that cropped up. Having keratoconus, it is difficult to navigate all the eye appointments and new contacts and the fitting process. I need another cornea transplant but because of all of this cancer stuff, I am trying to put it off as long as I can. The recovery time is around 12 months, and I am the one needing to drive right now. Anyway, we said we would come to Fayetteville straight from Atlanta. Normally, David would not have gone with me feeling the way he feels, but it would have taken longer to come back home and then over to the doctor. So up we went. I packed a bag with toiletries and changes of clothes in case we had to go to the hospital, and I had Ensure and snacks for him going and coming. My appointment did not take that long and before lunchtime we were headed to Fayetteville. Before leaving we took his temp and it was around 96. More on the low side now. About halfway there, David’s slight hand tremor turned into full body tremors. This was not seizing or chills but tremors. Head. Arms. Hands. Legs. Everything. This was very scary once again because I didn’t know what to do. By the time we reached the hospital, he was having trouble walking and getting inside. Temp was still around 97 at this time. Once they called him back, they planned to only take blood from his arm and not use his port. I asked if someone could take his BP and heart rate before taking the blood and they did. BP was 120/73 and heart rate was 139. Tachycardia. Of course, this got attention and they moved us out of the lab into an exam room. They accessed his port to get the blood draw, and we saw C the PA who we haven’t seen since early in the year. C was concerned and took a minute to catch up with things and discussed with us that he was showing signs of sepsis and that we just had been in the hospital and had all the cultures done, it also indicated it could be the same cancer fever. WBC was in the normal range and hemoglobin was 8.1 which is still low, but it is better than the 5.9 it was before the transfusion. It is so hard to know what to do and even the doctors are guessing. At least it isn’t just us not knowing what to do. He decided he would like to go downstairs and talk to Dr. B in person and get his opinion on the best thing to do. He said he really hated to send us to the ER. We said we didn’t want to go either. David was still having these wild tremors, and so I got him to get on the table and stretch out to try to calm his heart rate while we waited. C came back and said Dr. B also did not want to send us to the hospital and risk us getting trapped there all weekend like before. He said to continue the antibiotic and let them know ASAP if the fever spiked over 100.5 and had new symptoms. We were glad to be able to go home. C offered to have David get a bag of IV fluids and we agreed to do that hoping it may bring any wayward electrolytes back into line and calm the tremors as well. The fluids took about an hour and a half and we went downstairs to infusion room #2 for that. David fell right into a fitful nap as soon as the fluids started and I just sat and watched him sleep. He woke up a few times with a start but seemed able to relax a little. His heart rate came down to around 118. The tremors did gradually lessen and by the time we left, I could hardly tell he was having them. He went fast asleep in the car and slept nearly the whole way home. I got him inside and on the couch to relax and got busy unloading the car and feeding the cats. His feet and legs were already swollen from the fluid by the time we got home. His temp was around 98 before he fell asleep on the couch. After about two hours, I went to check him and he was in full shaking mode. I pulled the blanket off of him and could feel the heat coming off his body. His temp was 103. I know we should have called it in immediately but he was in such a state, I knew the most important thing was to bring the temp down as soon as I could. I got some acetaminophen in him and got him sitting him and put ice packs behind his knees and cold washcloths on his head. He was drinking water but was so shaky, he could not hold the bottle. When I say I was frightened, that is an understatment. It took a good 30-45 minutes to start to see the temp come down and he was getting tired of the ice packs so I took them off. Within an hour, the temp was down to 101 so I was hoping it would remain on the decline. I gave him ibuprofen at this time, after about two hours, it was down to 99.7 so I told him to let’s move to the bedroom where it was a bit cooler and he could go to sleep.
This morning, I woke up a couple of hours later to check him. His temp was 97. Again, with the lower temp. We both woke up around 3:30 to wet sheets and a pillow. He had started sweating again, and so I changed his clothes and the sheets and we tried to go back to sleep. Around 7:00 this morning his temp was 94. This is as concerning as a high temp and could be any of the same issues including sepsis. I asked if he wanted me to call it in and he said he wanted to ride it out and see how today went. I got him up and moving around and we walked the driveway up and down a couple of times today. He has been so very tired and weak and cool to the touch. His temp hovered around 95-96 all day and around 9:00pm this evening, it was going up to around 97.7. The low temp is new to us and he said he never felt cold and actually felt ok for the most part after the harrowing night. He didn’t sleep too long today although he seemed pretty sleepy and kept nodding off. I think I was keeping him awake more than usually because I was so afraid it that temp jumping up again so quickly. He went to bed around 9:00 pm this evening and I told him I would wake up in a few hours to check his temp and make sure the night fever sweats had not soaked the sheets.
This sure is hard. I don’t know how else to say it. It is just hard. We know the “right” thing to do is call when the temp reaches 100.5 but that is going to happen without fail according to past experiences. It is so hard to do that knowing you will most likely be told to go to the ER and I know he doesn’t want that. I truly hope our trying to manage this is not something we regret. Hoping it is still relatively normal when I check him in a little while.