I never even heard of "Fever of unknown origin" before. It's probably because we always knew why our kids (or ourselves) have fevers. Most of the time it's because we have a bad cold.
We arrived Friday and there had been thunderstorm warnings. The weather was bizarre. The sky was gloomy orange. It was humid. But there was no rain. The next day we spent most of the day at the lake. Logan had to go "number 2" and daddy took him to the restrooms where there was no soap to wash hands. We had wipes back at the beach but no soap.
Logan was napping that evening on the bed (in the trailer). I went to check on him and felt his body. He was unusually warm.
When I told hubby he just thought it's because the weather was weird. Hot and humid. He seemed fine that evening except a little diarrhea (once). The next morning he felt warm again. I took his temp and it was higher than normal. I gave him Tylenol. When we got home on Monday he showed signs of a cold. Runny nose and a little cough. We thought maybe he caught something in the dirty bathrooms.
During that week he still had fevers. I called the doctor on Friday because I didn't think it should last that long. We saw the dr at the Saturday clinic and took him to the lab for blood work (that was fun). Lots of fighting and screaming but he posed for a photo lol
The only results was that he had the common cold virus and was anemic. His fever continued. After 10 days he was admitted to the hospital. They ran tests for viruses and bacterial infections. I'm sure there were other tests but I'm 33 weeks pregnant and so stressed, my head is spinning, it was difficult to keep up with everything they were saying. I was just looking for answers. They sent us home after 3 nights and finding nothing. They said we can leave because we would just wait around on the weekends. Since they didn't know what he had, he was confined to the room. We all wanted to be home.
A gift for our little man. Toothless Dragon.
He had endless Popsicles
Face Time with little brother.
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Happy to be out of his gown! |
His fever continued at home. He would sometimes vomit and have diarrhea. It was inconsistent. He had high fevers around 102. On August 4, I took him in to see his primary doctor. That night I realized the baby wasn't moving and hasn't moved all day. I went to Labor and delivery at the hospital because I also started to have frequent Braxton Hicks contractions. They kept me overnight for monitoring and daddy had to take Logan to his follow up appt with the Infectious Disease (ID) clinic the next morning. After seeing him, they wanted him admitted back into the hospital. At the same time, baby wasn't doing well and the doctors said we needed to do a C-Section. What?!? Now?!? This couldn't have been the worst timing...we had to call my in laws to stay with Logan while daddy came with me to the operating room to welcome our baby boy 6 weeks early.
I was so worried about Logan that this whole experience with giving birth to Dustin was not a happy experience. Dustin was doing great and was being cared for by the awesome NICU nurses. I visited Logan any chance I could between nursing times with Dustin at the NICU.
Logan was weak and tired and had very little energy. He barely ate. And he used all his energy fighting & screaming during blood draws. He needed an IV on his hand. I would go back to my room at night and cry. I felt so helpless. So frustrated that there was no answers. They started to want to test for more serious things. They didn't want to be that aggressive before but they had no results. His blood work shows typical patterns of Leukemia (possibly). The doctors didn't think it was likely but wanted a bone marrow test. Since he would go under for that, they also ordered a spinal tap to test for meningitis. They kept saying it's possibly a Rheumatology related issue but no one was positive. He had no classic "by the book" symptoms (they said). Specialist after specialist and they still had no answers.
A week later (with no results) they sent him home.
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Finally together |
Logan was referred to UCSF. They didn't think it was an autoimmune disease. We saw the hematology doctor at the cancer center weekly and did blood draws weekly... His white blood cells were low. Others were high... tests were all over the place. No one could make sense of it. There were only "it could be... It's possibly..." But nothing for sure.
Logan was weak. He slept a lot. I was so worried. We always tried to comfort him and make him happy. Whenever he smiled, it was enough to light up the room.
Eventually his fever lowered to the 100s. We stopped giving him medication on 8/21 because at one point he was vomiting a lot and ended up in the ER. August 22nd was the first time his temp dropped back to 98. Over the next month although his blood tests showed abnormal results he started to look better and became more active. The hematologist decided we could stop seeing her and said maybe it was just a really bad virus that dragged on. We did find out through all this that he's a bit anemic and has the Thalassemia trait. Although he didn't lose too much weight, he looked so thin and fragile.
He's had a few colds since then and one day of a fever (which freaked me out). It's going to be like this... I will freak out every time he has a fever. Every. Time.
The weirdest thing of all this? The week that he stopped having fevers, my mom asked me about the date he started having his fever (July 19th at Donner Lake). She went to a shaman or looked in one of their old religious books and came back to me and said that when we were camping, there were two evil dead spirits that "touched" him in a wrong way. They took his spirit with them and that's what caused him to get sick. One spirit died from drowning in the lake and the other died from a fallen tree.... They then had someone do some religious thing to ask for his spirits back. I know a lot of people would say "it's a coincidence". I don't know if this is why he got better but since none of the doctors could figure it out (One doctor even said they were embarrassed). I would like to believe whatever my parents did for him helped. I grew up in this type of environment. Eventually all my older brothers and parents converted into a different religion. Somewhere deep down, I still believe in all this stuff but now I just have no one to follow...