Mark's illness

Many of you have asked for more details and I wanted to document this ordeal anyway. No cute pictures or funny stories, just the details of Mark's illness. So, inquiring minds, here you go!

Last Sunday night (2 Sundays ago), Mark developed a slight fever. I took him to the doctor Monday morning just to rule out an ear infection since he had been touching his ears too. She found nothing so concluded it was teething. Monday night he was up for 3 hours in the middle of the night with a fever of 103. We went to the doctor Tuesday morning and he said that with no other symptoms, we should just treat the fever with Tylenol and Motrin and come back Friday if the fever still existed. Well, the fever never really went away we went back to the doctor Friday morning since he had developed a rash on Thursday as well and had become increasingly lethargic.

The rash, with the fever, made the doctor concerned so he sent us to the pediatric ER right away. He also suggested at this point that it may be Rocky Mountain Spotted Fever (RMSF). This seemed unlikely but given that we had been in VA (a high risk state) the week before, I thought he might be right. The ER doctors were not convinced since he didn't have all the symptoms of RMSF. So they told us he would be admitted (heartbreaking news) and the testing began. First, they sent us to radiology for chest x-rays to rule out pneumonia. Then they began getting blood. Well it turns out Mark is not generous with his blood because he has TINY veins and clots super fast (these are both great traits under any other circumstances!). So the nurses stuck him 4 times to get an IV in and they only got half the blood they wanted. It was awful! Then we saw a pediatrician from the hospital who told us she would do a spinal tap (horrors!) and get the rest of the blood herself. Luckily, I didn't have to be there for this! But she got the blood she needed and the spinal fluid was clear. So all good news.

Finally we got up to our room around 4 pm (we had gotten to the ER around 11am). We waited a couple hours for the pediatric infectious disease specialist to come see us. He came and basically told us that he had some symptoms of RMSF and some of Kawasaki disease. What?! Basically both have the same symptoms of fever and rash, but the way the rash developed was more like Kawasaki disease. (Incidentally, you cannot test for Kawasaki disease and the test for RMSF takes FOREVER to get results for so we're still waiting for that.) Even though the specialist was leaning towards Kawasaki, he couldn't rule out RMSF so he started Mark on antibiotics for it that night. We decided that, thought this medicine could turn Mark's teeth gray for life, it was worth it to prevent RMSF from progressing since it can be life threatening.

So we started the antibiotic hoping that we would see drastic results in 24 hours and not have to give him the treatment for Kawasaki disease. Giving the meds to Mark was not a fun time because he hated the taste. After the first dose, he threw up everywhere. So we knew to give it REALLY SLOW after that. He slept good that Friday night, but I did not...too worried! My parents arrived Friday evening to help with Gianna so Doug could stay with us at the hospital until late. We were SO happy they could get here so fast.

At 6 the Saturday morning, he had more blood drawn. Or I should say, they attempted to get more blood, but were mostly unsuccessful. This time, I almost fainted. Awesome. But that feeling passed quickly. Then Mark had an ultrasound of his gall bladder and an echo of his heart (both can shown signs of Kawasaki disease). The echo could show problems with his arteries and is the real danger of Kawasaki disease. Both showed no problems, which was great news, but didn't get us any closer to a diagnosis. Gianna, Grandma and Grandpa came for a visit in the morning too. It was great to see them and we are beyond grateful for the grandparents being here.

In the afternoon, we saw the specialist that afternoon and he said he didn't think Mark was improved enough to ignore the possibility of Kawasaki disease. We decided to wait the full 24 hrs from the start of the antibiotics to see if the fever went down before starting the treatment for Kawasaki disease. The fever did not come down, so at 8 pm Saturday night they started the treatment, called IVIG. The side effects of it are, ironically, fever and a rash (but more like hives in this case). And the risk of IVIG is that it's made up of people's blood antibodies. So the blood has been tested for everything they know about, but there is a very small percent chance that there is something in it that hasn't been discovered yet. Again, giving the IVIG was a risk we were willing to take to fix our little boy.

This treatment was loads of fun, wait no it wasn't. It was a 12 hour long IV treatment accompanied by aspirin every 6 hours. And we would have to stay at the hospital for 48 hours after the treatment was completed to make sure he didn't spike another fever and need another round of IVIG, so that would mean leaving Tuesday morning. But the main reason it was so awesome is because his vitals were checked every 15 minutes for the first hour and ever hour for 4 hours after that. Again not a lot of sleep for me! But Mark tolerated the sleep interruptions and didn't have any reactions to the IVIG. By Sunday morning, his fever was lower and as the day went on his rash seemed to be fading too.

Monday morning meant another attempt for more blood (unsuccessful, but in the afternoon, the hospital doctor got just enough to do a few more tests). But there was good news, Mark's rash was all but gone. Unfortunately, his fever never really went super low and on Monday afternoon got quite high again. The blood tests showed some signs that he was getting better, but his white blood cells were higher, so again, mixed results. Basically, if he spiked one more high fever we would have to repeat the IVIG. Luckily, his fever didn't get high again, but it didn't go away either. On Tuesday morning we were told we could go home if we wanted to or wait to have 24 hours fever-free before going home. We opted to play it safe and stay one more night. By the time Wednesday morning came, his fever had, in fact, been gone for 24 hours and we were allowed to leave!

At home we have to give him a few more days of antibiotic for RMSF (just in case it was that) and he has to have aspirin once a day for 4-6 weeks. We also have to follow up with a cardiologist in 6 weeks. So I guess the conclusion is that it was Kawasaki disease, but it still possibly could have been RMSF or just a weird virus. We may never know for sure.

We feel truly blessed that this did not end up being super serious. There are so many children in the world that are much more sick than Mark and my prayers are with them now more than ever. And words cannot describe how grateful we are to the hospital doctors and nurses and, most of all, to our amazing friends and family members for countless kinds words, positive thoughts, and endless prayers. We couldn't have done it without all of you and I'll never be able to thank you enough.