Tyler's Kawasaki Disease Story!

Tyler's Kawasaki Disease Story!
Tyler’s Story Current mood: determined Category: Life ..
This is the story of how Tyler came about being diagnosed with Kawasaki Disease: It started on Friday with fever. He had no other symptoms except fatigue. By Sat. the fever was hard to keep under control so we took him to the Emergency room where they looked him over and said his ear was a little red and gave us antibiotics for an ear infection. He had two doses, early sunday morning, around 6:00 am or so, Tyler developed a rash from head to toe and was vomiting.We took him back to the ER and they did not do anything except more or less glance at the rash and said its probably an allergic reaction. I could see where they would think that but my gut was telling me more. They sent us home with a new antibiotic and told me to give him some benadryl to help with the rash. Sunday evening he is getting dehydrated a little. His tongue had turned stawberry red and it was like his taste buds was raised, and it was so dry. By monday he was worse, he was so irritable, wouldn't take anything by mouth in the way of food or liquids and he was having some peeling on his feet. We took him back to ER and mind you he still has rash, high fever, strawberry tongue, and they said it would be at least 4 hours before they even got him to the back. I was so scared at this point, I mean how do you go from an ear infection to him not really responding, being dehydrated, high fever, rash etc. Something was seriously wrong and it felt as if they just thought I was an overreactive mother or something. A lady followed us out of the hospital because we decided to try to find another ER and told us of War Memorial, so we took Tyler there. They did take blood and his counts were all off but they said it was typical of a virus and thats what they felt he had. They told us to keep giving him syringes of liqued every ten minutes or so. We had already done this and continued to do throughout Monday night. Me and my husband Derrick was literally taking shifts on this. It was my turn two hours later I got up and after holding tyler for ten minutes or so he finally has a bowel movement, but it was like nothing I had seen. It was like a slimy gelatin substance (sorry but I feel the need to be graphic) that was black in color. I get him a new diaper, and keep that one in a baggie. A few more minutes past and he finally pee's but its bloody, I panic and go get Derrick up and tell him we have to get him back to the doctor, well its Tuesday (this was all on labor day weekend the peds was closed monday) the Peds office opened in less than an hour so we get ready to go there when Tyler's lips start bleeding, nothing had touched them they just bled. Well we get him to the Peds office and Tylers usual doc isn't there yet so another doctor takes one look at him and I knew even more than before it wasn't good. He tells me to take him up to the hospital which is right beside the peds office that he will let them know we were coming and he'll meet us there. They took Tyelrs blood after they finally found a vain and then he does a spinal tap on Tyler. It came back negative for bacterial menagitis but as stated before the counts were way off. He decided to go ahead and treat him for bacterial menagitis and start him on high fluids and rocefin. The fluids are the only thing that is doing anything for Tyler and that was hydrating him, he wasn't getting any better. He was addmitted in the hospital Tueday and they continued this treatment and with getting no results. The doctor did call for an infectous disease doctor who came down from Maryland on thursday. Would you believe that this doctor comes to the doorway and says he thinks he is getting the right treatment. He only looked at Tylers file, he never looked at Tyler, I was just, I just couldn't say anything, because he just turns and walks away, I remember me and Derrick just looking at each other stupified. By friday night Tyler was swollen, they claimed it was mainly hands and feet but it wasn't, I know what my child looks like he was swollen all over, and was gaining weight. He was gaining all this weight but wasn't eating or drinking. By saturday morning I was done, I had had it, I felt like I was staring death in the face, and I wasn't going to just sit there holding him while he died (which is what I felt was happening) I called our pharmacy to ask them about rocefin, I had asked if it could cause the swelling and after I told the pharmicist about the possible allergic reaction to the amoxicillin last sat. night she said rocefin was a form of amooxicillin and asked what he was being treated for, I told her, and she gave me other antibiotics that would be jsut as effective but hopefully no allergic reaction. So I thought at this point that his swelling was from another allergic reaction, and go back upstairs and confront his nurse with what the pharmacist had told me. She tries to reassure me, but I couldn't listen at that point, I wanted a doctor in there. Well finally the doctor who was on call that saturday day came in and me and Derrick were just done, Derrick however can maintain his composer under all this stress (probably from his law enforcement background) I however can not. I didn't care about the hospital staffs feelings or anything else. The doctor and intern appeared in the door and introduced himself and the intern and I looked at him and said I want the rocefin stopped. He asked why I then explained and he said he felt at this point we should continue, I said no I want it stopped. He said I'm going to take a look at Tyler now, and I really felt as though he was going to be like the others and just blow this off. But he looked up at us and asked "have you ever herad of Kawasaki disease". We had not hear of it so he explains what it is and says he feels like that was what was happening to Tyler. Everything went so quickly after that, I didn't have time to absorb all of this when we were off by ambulance heading for the Childrens Hospital in DC because City Hospital could not treat Kawasaki Disease. Derrick was behind us and arrived about 45 minutes after me and Tyler at the children's hospital. They looked him over and took the entire week events down and this was the ninth day of running a fever and said we need to treat him with an IVIG which is gammaglobulin (an ingrediant in blood). They gave him his first IVIG along with benadryl and started him on high doeses of aspirin to help from keeping aneurysms from forming. Later Sunday he was responding to it a little. We felt good. Well that night his fever spiked back up and the rash was back and after the team came in they said lets do another round of IVIG. Well it worked. withing 4-5 hours Tyler was sitting in my arms and actually smiling some and taking a couple bites of grilled cheese. I cried I was so happy and relieved. The swelling of his body was going down and rash was gone. Only a parent of Kawasaki I believe can truely understand how I felt in that moment in time. He went from being almost lifeless to smiling at me, other than when my two children were born that was one of the best moments, happiest moments I had ever felt. I was breathing again, I know its not possible but it had felt like I was holding my breath throughout all of this. I knew we weren't completely in the clear. we had an echo done and a couple days later we was headed for home. At that time Tylers echo they said was normal. His skin was peeling mainly on his extremities. (his hands, feet and his armpits which is normal with Kawasaki disease. It had another appointment in 4 days to come back and get another echo, they said his right coroanry was noticably inflammed and resembled a string of pearls but no true anyrysms had formed. (Medical terms: Estasia of right cornary artery) We had many more echos from then till now, my understanding is they usually do one a week after being discharged, then 4 weeks from that then 3 months then 6 moths then a year. Well we had about ten in 8 months time. Tyler was also on the aspirin therapy long after the usual which is 2-3 months. Tyler was taking aspirin for 7-7 1/2 months. They still say when he goes in that by looking at his echo compared to a child who never had Kawasaki you can tell that he has it. But thankfully he never formed aneurysms from it.He is doing good right now, that first year he got sick alot and still catches things easier than he did before the Kawasaki disease came on but he's here, he's a happy 2 1/2 year old and I thank god every day for my chidlren. Our current pediatrician is none other than the doc that was on call that Saturday who discovered what was happening to Tyler, he was our miracle doctor and I thank him for showing up when he did.IWANTED TO ADD: That Tyler also had to learn how to walk and talk all over again after Kawasaki Disease came about with him.I also would like to thank my daughter Caitlyn, she was truely amazing through this whole ordeal and continues to be now. Most children dont have the patience to sit in one place all day surrounded by doctors and everyone talking, but Caitlyn did, she is the best of a big sister, she would kiss Tyler and say "I hope you feel better bubby". My children are truely amazing.I would also like to thank all of my family and friends for their support when all of this was going on and the continued support they give today.Love your children, appreciate your children, they are a gift to us all. I will always be thankful, loving, adoring and appreciating my children. They are the meaning of life for me. Luv,