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After being discharged from the children’s hospital that Friday, we were looking forward to the weekend...hoping by the end of it, Jamie would feel better. Friday night was a rough one, he was very sick still and the Clindamycin they sent him home on was a big pill. They did tell us it was okay to open the capsule and try it in juice or apple sauce and feed him it that way...every way we failed and he puked it up... and I tasted it because I didn’t understand why he continued to freak out about it...Well let me tell you...that stuff was NASTY out of the capsule...but as a 6 year old and it was a huge pill he couldn’t swallow it! So I found myself 11pm that night (he had to take the medicine every 6 hours) calling the on call doctor and asking if there was anything else they could do because the pill was not working. The pediatrician on call was Dr. G not Jamie’s pediatrician but from the same network. He asked what had been going on and I explain the last week and the situation we were now currently in. He tells me there is a liquid form but it’s the same tartness as the capsule being opened but I could ask the pharmacist to flavor it. So at Midnight I was driving 20 minutes away to a 24 hour pharmacy to pick up the liquid clindamycin. Thankfully when I got home and gave Jamie the medicine he said it was much tolerable and would take it willingly. Praise the Lord!
That Saturday evening my husband and I had tickets to a play and dinner for my husband’s birthday. I had posted them for sell earlier that week on social media expecting not being able to go come Saturday. However both my husband parents and mine stated we still had the tickets and didn’t need to waste the money and we deserved the time out. My dad took our youngest and my husband’s mom stayed at our house with Jamie. The show was about 2 hours away from home and all evening I worried for Jamie. He had perked up a little that day but was still really sick and was not himself. I called often checking on Jamie while we were away and each time my mother in law said his fever was broke and he was resting. By 11pm we were home and I checked his temperature, it was still down and he was resting. I went to bed.
3 am, Jamie wakes up crying in pain. I check his temperature and it was 102. I begin the rotation of the Motrin and Tylenol. All Sunday long his fevers were up and down. Just as easy as they would shoot up they would break. His eyes began to become red again, but the swollen lymph node was still down compared to the size it was the weekend before. My husband and I had already called and made an appointment for Monday with Dr. G after we left the hospital Friday as a follow up admittance visit, which is recommended any time after you leave the hospital, so we were both relieved to know he had an appointment the next day...so if the antibiotics didn’t help by tomorrow- we were already going to his pediatrician.
Monday, October 19th...1 week and 1 day since he had first became sick...he was still raising and breaking fevers, and still had blood red eyes. Jesse and I both went to work but kept Jamie home sick from school and he stayed with my mom. I frequently texted her throughout the day to see how he was, anticipating his pediatrician appointment at 6pm. She would text back "still the same, not getting up, a little perkier, fever at blah blah, fever broke" I knew in my gut this was something more than a bacterial or viral infection and I wasn’t taking that as an answer anymore.
I had repeatedly throughout the weekend said over and over again- let’s take him back to the hospital...but was reassured from many people that it was just a sickness and we needed to give it time. He would make a little improvement but when the fevers hit he would go back down. But my biggest concern was why his eyes were bloody? What virus or bacterial infection turns your eyes blood red?
5:45pm I met my husband and Jamie at Dr. G's office. Jesse had to carry him in as he was still too weak to walk...we waited in the waiting room and all Jamie could do was cry in pain. One thing you should know about our son is he is a talker...and a go-er. This kid talks and goes nonstop...so to see him not talk, or move in over a week...was really eating me up as a mother.
Were finally called back into the room and I carry him in and lay him down on the bed. He's crying now that his eyes hurt and are sensitive to the light and asks if they can be shut off. The nurse checks his temperature and it only registers at 99.something...I inform her of the past week and that his fever will shortly go up if were here long enough. A few minutes later Dr. G comes in...He takes one look at Jamie...looks at us...and says "and the children’s hospital told you this wasn’t Kawasaki?" we go over the last week, the stay at the children’s hospital, and how this wasn’t our Jamie...he tells us he is going to make a call and would be back in a few.
He returns and lets us know that he called the Infectious Disease team at the children’s hospital and talked to the head of the department there...Dr. G tells us that he was very concerned it was Kawasaki Disease and the children’s hospital was wrong and when speaking with the infectious disease doctor he agreed as well...they told us to go home and if Jamie’s fever went above 100.4 to call right away and head to the children’s hospital and let them know he would be a direct admit through the infectious disease team. Dr. G informed us that he was sure it was Kawasaki and that if it hasn’t been caught in time...there could be serious consequences to Jamie’s heart...we immediately were heart broken.
No sooner than we had got home Jamie’s fever spiked to 101.9 and I called the doctor...they told us to pack a bag and head to the children’s hospital as they would be admitting him to get an answer, no matter if that answer was Kawasaki or something else.
In this moment- I was angry...I felt that I had went blue in the face, repeating myself to family, coworkers, friends...whoever would listen that there was something wrong with my baby and I was told over and over again that it was just an virus or bacterial infection! I felt like I had to argue with myself more than anything to agree that he was fine and it wasn’t something more serious.
I had told my husband over and over again over the previous weekend that I felt like there was more going on...but was reassured that the antibiotics had helped the swelling in his neck and his eyes did look a little better so he was going to get better from the antibiotics.
Continued in "Incomplete Kawasaki?"