We recently returned home from the hospital, after spending a few days there with Rory. After our visit to Buffalo, Rory developed a fever that lasted several days longer than it should have. We got home to Pittsfield on Sunday and Rory was starting to feel hot. On Tuesday, he was still feverish, so I called the pediatrician and we went in to the office. They said it was probably just a virus, told us to give him Tylenol, to keep and eye on his temperature, and call them if the fever continues through Thursday. By Thursday the 102 fever was still lingering but Rory was still his happy, smiley self, and he was responding well to the Tylenol, so we weren't too worried, figuring it was just a stubborn virus. Over the weekend, his fever went up to 103.5, but again continued to go down with Tylenol. Starting Monday Rory was feeling and acting more miserable, though, so we called the office again. We went in and the doc wanted to do some tests to help figure out what was going on. After blood tests, urine tests, chest x-ray, and flu swab, they had ruled out pneumonia and most common illnesses, but still weren't definitely sure what he had. We went back the next day on Wednesday and they said if things continued as they were, we might have to go to the children's hospital at Baystate Hospital in Springfield. Thursday was Rory's scheduled 4 month checkup. He was feeling worse, so they took some more blood, but the results were the same: increased platelets and decreased hemoglobin. Our doctors had been in touch with the infectious disease docs at Baystate, and decided that we did in fact need to go to there that day. So Rory and I set out, with Steve to follow once my dad came to get Rosie.
Of course, they did more tests once we got to the hospital. Poor Rory was a little trooper with all the people poking and prodding him! The deciding factor came after the echocardiogram (ultrasound of the heart and surrounding vessels), though. It showed that he had dilated or enlarged coronary arteries. That, combined with the abnormal labs and long-lasting fever led the the docs to diagnose Rory with atypical Kawasaki disease. He did not present with all the usual symptoms that an older child would exhibit, but it's common for infants with the disease to have atypical symptoms or presentation. This
website offers more info, if you're interested, and this
video is fantastic at explaining the disease, treatment, and prognosis.
They started Rory on the medication, IV immunoglobulin (IVIG). He had a bad reaction to the medication, which was being slowly increased over a long period of time. So they stopped the IVIG, let him rest, and then started it again at a lower dose and slower rate, which worked fine. That, along with starting a regimen of aspirin, helped to get rid of the fever, finally. (YAY!!) We had to stay in the hospital for another 24 hours after the fever broke to make sure it was completely gone, but our happy little boy was definitely feeling better, since the smiles were returning! Rory's prognosis is good, but he will need follow up echocardiograms to check the status of his blood vessels.
Our sick little Rory awaits his many tests.
More waiting, but at least with smiles
Getting checked out.
A more typical expression during the early part of the hospital day.
Anytime Rory was sad and crying, we would push the button on his star and he would instantly calm and start cooing. The star plays a recording of Rosie singing "Twinkle, Twinkle Little Star," which she loves to sing to him whenever he cries at home, also. Rory seems to recognize his big sister's voice right away, sometimes with a big calming sigh. :) It worked every time and we often played it over and over to get through procedures and vitals.
During the echocardiogram
Luckily, Rory slept the whole time, so the tech could get all the pictures she needed.
The Child Life people had some great toys we could borrow.
EKG
Some smiles for Daddy.
During the IVIG.
Feeling better after the IVIG.
Rory's great intern, Dr. Andrews
Waiting for the final ok to go home
Ready to head home!
