That's what Michael has, an unidentified virus that resulted in a rash. If you are scratching your head and wondering how the hell we ended up in the hospital for that, well so am I. I'm actually going to walk through what happened, not because I think you all care so much, but because I think I made some mistakes that could have avoided all this nonsense. I know a lot of moms read this blog and trust me, YOU are responsible for your child's medical care. The entire time we were in the hospital, no one once spoke to Doug, it was always me. And I'm sorry, it's going to get long. I actually hate long blog entries, I like to get in and out, that's why I don't write them
Friday Michael had a high fever. Friday night he he was up all night complaining that his ears hurt. Saturday morning we took him to the doctor and was told he had a sore throat. Not strep, a sore throat. Sunday morning he threw up twice, Sunday afternoon he developed a rash all over his body. I called the pediatrician and was told to get him to an ER immediately.
We went to my least favorite hospital in the area. Not because I wanted to, but because the doctor insisted we go there since it was the closest and they have privileges there. They also have privileges at Children's hospital, which I should have asked to go to. Mistake #1. I should have asked to be sent. They do not have an ER.
We got to the ER and Michael is running around like a lunatic, like there is nothing wrong with him. He is running 102. They run a bunch of tests on him and the nurse keeps telling me the tests look fine. The ER doctor walks in, with a big smile on his face, and says he was admitting him. I honestly thought he was kidding. Really. I thought he was going to follow up with, just kidding you can go. When I finally got that he was not kidding, I lost it. I started hysterically crying. Michael kept saying, "Mommy you okay, Mommy I can help you." The doctor never explained why (Mistake #2, keep asking questions), just told me my pediatrician insisted on it. (By the way, this was not my pediatrician, but a doctor in the practice). I waited an hour and then asked for the doctor to be paged. (Mistake #3, should have asked to speak to the doctor immediately). She kept saying he was at risk for Kawasaki and it was better to keep him here than send him home. The doctor at the ER did not think he had Kawasaki, those kids are really sick and he was fine. (I have learned at his doctors appointment today from my doctor that I should have insisted he be released and be at their office first thing in the morning. She told me to push harder. I explained that was a hard thing to do when a doctor is telling you something. I am not a doctor, I did not go to med school. Mistake #4.) Mistake #5, should have asked for a second opinion, or a transfer to Children's.
We get upstairs to the pediatrics floor, and the doctor on staff also said she does not believe he had Kawasaki, but my pediatrician is insisting he does. Why does the one person who has not seen him have so much power? They will watch him, repeat the labs tomorrow, and get a cardiac consult, and go from there. We are up all night at the hospital. Why do they insist in coming into your room at all hours? Why do they wake your kid up at 6 am to look at his rash? Why are hospitals so loud and not dark? They made Michael sleep with an IV and a heart rate monitor and he kept getting himself tangled in them and would wake himself up.
His fever breaks at 11:30 pm. I know for sure that is when it broke because he woke up screaming and he was soaking wet. Because his fever broke, we are out of the running for Kawasaki. You can only have Kawasaki if you have a fever for 5 days. He did not. In the afternoon on Monday another doctor from my practice came and looked at him. And by looked at him, I mean she looked at him. She did not touch him. She also did not understand why we were there. They kept us until 4 pm to make sure the fever did not come back. They were going to keep us longer but at 4 pm when Michael, who really was such a trooper through this whole nonsense, started to break down when some student nurses who were useless were trying to do an exam on him and had no bedside manner whatsoever. I told them I was done, we were done. There was no reason to be here and I wanted to see a doctor RIGHT NOW! We got released with a promise to make an appointment first thing in the morning. I called the doctor as they were standing there, anything to get the hell out of there.
The doctor I saw this morning, my doctor, had no understanding of why we had been hospitalized. Even more amazing, when I got to the doctors office, they put us in the chicken pox room. I explained to her everything that happened. and she said she would talk to the other doctors. I explained that if a doctor insists a child needs to be hospitalized, that doctor needs to communicate with the parent because the hospital is not going to. The hospital washed their hands of the situation and really did nothing for us or to us.
In the end Michael was diagnosed with an unidentified virus. And a note that he is fine to go to daycare. Because if you saw the rash on this kid, you would not think so.
Don't get me wrong, I am incredibly grateful he is ok. And I understand erring on the side of caution. Better he be hospitalized then sent home and something happens. But, you need all 5 symptoms to have Kawasaki and he barely had two. Way to jump the gun a little.
Lessons learned: ask questions, push harder, go to the hospital you want to, don't let doctors bully you, you know your kid! If the doctors are telling you kids who have this disease are miserable and yours is running around the ER happy as a clam, they don't have it.
Thank you all for your thoughts, prayers, comments and kind emails. This blog and the friends I've made saved me here. Robbin was helping me diagnose him this morning. Every email, every comment, brought tears to my eyes.
I do not know how parents of chronically ill kids do it. I never want to hear ER, hospital, or your child needs to be admitted again. Watching Michael get an IV and blood drawn over and over again was heartbroken. He was traumatized, for absolutely no reason.