Elli is a tricky patient. For the last 2 weeks she has played a masterful game of hide-and-seek with us and her doctors as we tried to figure out what was going on with her.
The game officially started two Thursday mornings ago, while I was at work. (I personally believe that she's been playing for months -- spiking phantom fevers and coughing up stuff just often enough to keep us all guessing.)
Anyway, the nurse called to report that Elli had a fever and must go home. Scott picked her up, but she acted completely normal all afternoon, including consuming an entire McDonald's yogurt parfait. He theorized that she was pulling a Ferris Bueller -- faking a fever to get out of school and spend time with dad (he was home when she got on the bus, so she knew he was working from home that day). We suspected maybe she'd gotten overheated during recess (she's very sensitive to extreme temperatures), which made her look feverish.
The next morning, I noticed that she was warm when I got her out of bed, but that's fairly normal too. Her body temperature is like a pregnant woman's -- she's always hotter than anyone else in the house and frequently gets so hot she sweats in bed. I gave her some Tylenol just in case -- she seemed a bit out of sorts, but has loose teeth and all sorts of little things -- and sent her off to school.
They called as soon as she arrived, saying she was still feverish, and really shouldn't have come back since kids are supposed to be fever-free for 24 hours. (I sensed a quiet "tsk, tsk" in that comment, but we honestly didn't believe she had been feverish the day before!) They also told me that 5 other kids in her class were out with high fevers.
I was supposed to attend a "Mommy Party" held by Big Boy's preschool class that morning at 10:30am, so I began a mad scramble to find a sitter to watch the girls. I hated to miss the party -- Big Boy had been talking about it, practicing songs, and making surprises for weeks. At the very last second, I got ahold of a friend from church, who miraculously had the morning free and could drop everything to come over.
When Big Boy and I got back, Elli's fever measured 102. Now I knew we had a serious virus on our hands. I learned a trick at the hospital when she was a baby -- you can safely stagger Tylenol (acetaminophen) and Motrin (ibuprofen) 3 hours apart, so when one dose wears off, the other one is working at full strength. I've grown more hesitant to use this trick, so I usually alternate every 4 hours, but either way, it was safe to give her more medicine. So around lunch, I gave her Motrin and let her rest on the couch.
That afternoon I watched her progressively grow more and more lethargic. She never just lays anywhere -- she's always moving and rolling and can't be safely left anywhere she might fall. She also never naps. But that afternoon, she lay motionless, drifting in and out of sleep.
As the hours passed, her fever had actually worsened -- by 2pm it was up to 104. That's when I decided to call the doctor for advice. I said I didn't want to come in if I didn't have to -- just wanted him to know and to make sure I was doing everything I could for her at home. He told me I could go to every 3 hours, give her higher doses of the fever reducers, and bring her in if she had trouble breathing. About an hour later, she started grunting with each breath, so I called back and managed to snag the last appointment of the day.
Elli decided to play with the doctor. You know how a car can cause you all sorts of fits... until you bring it to the mechanic? Elli perked up, stopped grunting, and the fever disappeared (all probably due to the adjustment in meds) just in time for her appointment, so she appeared to be on the mend by the time we walked in.
However, that night "it" returned with new vigor. She awoke around 4am burning up with fever and grunting with each breath. All day Saturday she alternated between grunting and dozing.
Then she kicked the game up a level. That afternoon she threw up. That evening she had an hour-long episode of a new and unique-for-her crying that clearly indicated an internal pain unstopped by the alternating doses of tylenol and motrin. Which, incidentally, didn't relieve the fever either -- she remain over 100 degrees all day. She couldn't take a deep breath or lay on her back. We finally got her to calm down when we propped her over on her left side.
I tried to palpate her belly to see if any specific area hurt, but she was so tight and tense I really couldn't be sure. I thought her back might be more tender and began thinking either appendix or bladder/kidney infection. We discussed calling urgent care more than once. Ultimately, we decided to wait it out another day since our home oxygen monitor showed her levels to be normal.
Sunday the virus hid. We thought she'd finally turned the corner. She ate a decent lunch and was more alert that afternoon. Scott and I breathed a mutual sigh of relief as I was able to keep my plans to send her to school and go into work Monday afternoon.
Again at 4am (what's the deal with 4am???), she woke up with a 103.4 fever, along with grunting and shallow breathing and everything else we'd seen Saturday. Scott and I both agreed that five days of fever was enough. As soon as the doctor's office phones turned on, I hit the lines, looking for the earliest appointment I could get. It worked out well that Scott had already planned to stay home -- he kept Little Girl and took care of Big Boy's school routine while I took Elli in.
The doctors agreed that five days was too long. We began in earnest what would end up being days and days of seeking.
First step was a rapid-strep-test. Result? Negative.
Next step was Children's outpatient center for a chest x-ray, urinalysis and culture, CBC (complete blood count -- high white cell count shows the body is fighting an infection), and pulse oximeter reading (to get a good oxygen level).
Result? Pneumonia in the lower left lobe and an elevated white cell count. I got the news while on the way down to work. They decided to admit her (directly -- we got to bypass the ED) for a couple days of IV antibiotics.
We began a 2nd mad scramble. Scott worked to find someone to watch the younger kids until my mom could get there, packed overnight gear for me, and drove Elli down to the hospital. I called my mom, took care of my work responsibilities, signed all the papers in admitting since I have all the copies of insurance forms, and met them once we had a room all set. Scott said Elli looked awful the whole way down (times like these we hate that 45 minute drive to Children's).
We headed up for a long night on a general/community pediatrics floor. (More on this in another post.) She was still clearly in pain, vomited during the admission process, and refused to eat. The nurses started an i.v. and we tried to keep her hydrated and comfortable by giving her fluids and fever meds through the night. They started two oral antibiotics, saying the only good candidate for i.v. was one she'd had a significant reaction to as an infant.
In the morning, the attending physician explained the physical pain for me -- she not only has fluid in her lungs, but in the space between them and the ribs. He recommended a change of antibiotics to better address this part of her "complex pneumonia." It came in oral form so we could go home on it, and they talked about sending her home. I knew in my gut that she wasn't ready, but at the same time, I thought we had our questions answered. So I agreed to a discharge and we took her home that afternoon.
But the virus wasn't done yet. She had two more horrible, agonizing bouts of screaming, both shortly after we gave her the new stronger antibiotic. I called the pediatrician in the morning and begged him for a PICC line (peripherally-inserted central catheter) so we could give her i.v. antibiotics and bypass her stomach altogether. He managed to get her an appointment that afternoon, and we drove back down to Children's. He did warn us that we might have to stay overnight if they couldn't pull together the home care nursing required for all patients going home with a PICC line.
We've had trouble getting the PICC put in before, but that day she flew through the process. We did spend the night, but again made plans to head home the next day. Finally, about 5:30pm, we were packed and ready to go. Then a medical student came in and told us that her clotting time, a test we'd requested that morning, came back extremely high. They believed it was a false reading because it was drawn from her PICC, which contains heparin and would therefore lead to an abnormally-high reading. They asked if we wanted to wait for them to retest that day, or just come back for a lab the next day.
We decided to have it redrawn while we were there. I had a suspicion that it was high, based on our 7 years of experience with her. And I wanted to save us a trip the next day.
The second test came back almost as high as the first -- her blood was so thin that we could not safely take her home without risking internal bleeding and death. Before I left, she had another spell of screaming, and this time her oxygen level dropped significantly and her skin looked gray and mottled. We got the doctors in, and they ordered a chest x-ray.
I was exhausted, so I decided to leave Scott in charge that night and try to get some sleep at home. I had a good little cry on the way home that night. I was so disappointed that she wasn't in the van with both of us, and more than a little scared at how sick she was. I knew she was spending another night for a reason.
Before I got home, the x-ray came back. The report said, "entire left lung white, indicating either complete lung collapse or partial effusion."
An ultrasound showed the partial effusion -- she had a 2cm by 5cm pocket of fluid around her left lung, which was restricting its ability to inflate and causing Elli the pain we had been seeing. It also explained why she was more comfortable laying on her left side -- it elevated her right lung and maximized its capacity to inflate.
The doctors finally understood the necessity of constant pain management for her. They wrote for around-the-clock Tylenol (no more Motrin with her blood so thin), a dose of vitamin K to bring the clotting time back down, and 4-times-a-day i.v. antibiotics.
But Elli wasn't quite done yet. She got worse before she got better. Her oxygen levels dropped Friday evening in yet another painful episode (which really scared me) and stayed low even after she settled down, so they did more blood work. This showed a worsening anemia, or lack of red blood cells. These cells carry oxygen to all parts of the body. They ordered a red-cell transfusion Saturday afternoon, which worked an overnight transformation on her.
Sunday morning she woke up perky, smiley, and happy for the first time in more than a week. We got discharged Monday afternoon, and she's made slow-but-steady progress ever since. Today she returned to school for the first time in 2 weeks!
She has lost weight and become quite stiff over the past two weeks. She can hardly bear to sit up straight, let alone bend to her right. She still has some big coughing fits where she struggles to get a breath, and isn't quite eating enough. But she's finally really on the mend.
And we're praying that this game of hide-and-seek is done for now.
