Sadie's Horrificalistic Illness

Sadie is home from Primary Children's Medical Center today, after spending over a week in the hospital.

About ten days ago, on Wednesday, Sadie woke up in the morning complaining of soreness in her legs. It wasn't too bad, and we figured it was because of her dance practice the night before. She went off to school, but later that day she said that in addition to the pain in her legs, which had worsened, she also had a sore throat, a slight fever, and a rash on her hips and upper thighs.

The next day was much worse. The pain had increased in intensity and had spread throughout her entire body to the extent that it hurt her to even touch her. The sore throat was very intense and the rash had spread. We took her to the clinic to have her checked by the pediatrician, who said she just had a cold and did not have strep throat.

She stayed home from school on Thursday, but Friday was even worse. By the end of the day Friday she was in terrible pain everywhere. Late Friday night, when she said she couldn't breathe because it hurt too much in her left shoulder, her chest, and left abdomen area, Amber took her to the emergency room at Mountain View hospital in Payson.

Initially the doctors were a bit baffled by her condition. Despite having tested negative for strep earlier in the week, she had a positive strep test in the hospital. But it was clear that something else was going on, likely brought on by the strep infection.

By Sunday the initial diagnosis was HSP, which is a type of blood vessel infection. Sadie clearly was showing a significant inflammation inside her body, most concerningly around her heart (pericarditis) which hurt so much that Sadie couldn't even lay back past a 45 degree angle. She was transferred to Primary Children's Medical Center Monday initially so she could be monitored and have an EKG and an echocardiogram performed. The good news Monday was that the EKG and echocardiogram both came back normal, despite the inflammation (or "rub") around her heart. This pain was still keeping her from laying down at all, though. The doctors here did not agree with the initial diagnosis of HSP and so we ended up staying at PCMC.

Because the doctors weren't sure what was wrong with Sadie, they were taking extreme precautions with her. A sign was placed on her door indicating that anybody who came in or out was supposed to wear gloves and a mask, and don a gown before performing any exams. Amber and I didn't have to cover up like that, but we had to sterilize our hands every time we came into the room and every time we left.

There seemed to be a pretty strong effort to figure out what Sadie had. I remember one day we saw the attending pediatrician along with three resident pediatricians, the rheumatologist, and the infectious disease doctor and her resident - seven doctors in one day. We ended up also seeing two other pediatricians, another rheumatologist, and a dermatologist and her resident, all collaborating and trying to figure out what she had.

We were really impressed with the hospital, doctors, nurses, volunteers - pretty much everyone there was wonderful. This made it even harder sometimes because it was so frustrating to go day after day not knowing what was happening. We knew they were doing their best, but until we felt like we had a handle on her situation, we didn't know exactly how to treat it or when she would be able to go home. There were times during the week when it seemed like she would be there in the hospital forever and we wondered how long it would be before our family was back to normal.

About midweek the pediatrician suggested we stop giving her Motrin. This seemed like a questionable plan at best. She'd been struggling to manage pain and Motrin seemed most effective at helping her. But they were worried about the effect Motrin was having on her kidneys and felt it would be good to stop using it.

Finally, on Friday, some progress. She slept much better at night and didn't need so much oxygen as before to sleep. When she woke up, she found that the pain in her chest had all but vanished. Doctors said the rub in her heart was gone, which indicated that the pericarditis had subsided - a great positive sign. We also saw on Friday that her joints were swollen and sore - knees, wrists, elbows, etc. This started Thursday, not long after we stopped using the Motrin, but had gotten worse Friday. This doesn't seem like a good thing, but up to this point the doctors were a bit perplexed because they WEREN'T seeing the swollen joints.

Apparently, many of the other symptoms she had seemed to be pointing toward a rheumatic condition, but the lack of swollen joints didn't fit the picture well. It seems that by going off the Motrin we could see that it had been masking the joint swelling which would otherwise have manifested itself. So although it made Sadie more uncomfortable, this ended up being rather a stroke of genius.

At this point, mid-Friday, all signs were pointing fairly strongly toward rheumatic fever. We started treatment for rheumatic fever, which is a fairly strong aspirin dosage to manage the pain and swelling. This is a scary treatment for a young child - if a child contracts the influenza or varicella (chicken pox) virus, aspirin use during that time increases the chance of them developing Reye Syndrome, which is extremely serious. So we were pretty nervous about starting aspirin treatment, but decided that we would carefully and cautiously proceed with it. She responded to that rather quickly, which is another strong indication that rheumatic fever is the cause of the suffering here.

So Friday was a generally positive day, but not everything was roses. The doctors still weren't sure what Sadie had so more tests needed to be done. Rheumatic fever is not a disease like swine flu. It isn't contagious; you can't get rheumatic fever from someone else who has it. This also means there isn't a clear test you can perform to check for rheumatic fever. It's more that if a person manifests enough of the symptoms of rheumatic fever, and if they don't test positive for some other disease, their condition gets categorized as rheumatic fever.

Because of this, Sadie had to do another series of blood tests, to rule out some other obscure possible diagnoses. She'd had about enough of needles by this point so this was a tough thing to have to endure another blood test. She also had to have a skin biopsy taken from her leg where the rash was most intense, again to test for possible alternative causes. However, checking for a positive reaction to rheumatic fever treatment was another part of the strategy, and her positive response gave confidence that the diagnosis was pretty accurate.

So today we got to bring our little girl home and get our family back together again. It was a long and trying week, but we're grateful to be together, grateful to have Sadie feeling a little bit better, and grateful for so many caring family, friends, and coworkers that expressed concern, sent flowers and gifts, visited, called, provided service, and otherwise helped us out. We're also grateful for people who provide loving care to our sick little ones, not just doctors and nurses, but also others like the wonderful volunteer workers, the girl who came to visit Sadie and played dolls with her for almost an hour, and all the people who donate those dolls, board games, card games, toys, crafts, movies, video games, stuffed animals, pillows, blankets, and other things to comfort those kids while they are sick and afraid.

Unfortunately, we're not out of the woods yet. Sadie's still a sick little girl and has some recovery time ahead. She's already given more blood samples than she'd care to think about, but we still have blood tests and echocardiograms and follow-up visits with pediatricians and rheumatologists and other doctors to think about. And lots and lots of rest and drinking of liquids, none of which Sadie seems to want to do.

Nevertheless, things are looking up. Having the family back together again, in our own house, was a big emotional boost for us. Thank heaven for families.