Sunday evening July 31, 2011, we noticed our daughter Olivia was not acting her normal self. She seemed fine earlier in the day as she played in the pool and with her cousin. Monday Aug 1st, my sister-in-law called me stating that Olivia woke from a nap with a fever of 104.9 and was complaining of a sore throat. She stated that she would not eat and did not want to drink anything. On Tuesday Aug 2nd, I took her to the Minor Care Clinic at the ER due to not being able to get into her pediatrician. Her rapid Strep screen was negative, which surprised me as she was acting just like she did the last time she had strep, except this time she was vomiting as well. They said she had the beginnings of an ear infection, so we got her antibiotics and something for nausea and went home. By bed time that night, she would not eat or drink and was very lethargic. Even though we were giving her Tylenol and Motrin religiously, her fever would spike as one medication would wear off. So I took her back to the ER. This time they had to give her IV fluids as she was dehydrated and they also drew blood for lab work. I then noticed she had these tiny red spot on her arms and legs. However she still acted like it was strep and sometimes with strep and high fever some children get a rash (Scarletina). This is also the day her mother had surgery to remove a Cancerous Mass from her kidney, so while she was recuperating in one hospital, I was at another with our daughter. Wednesday Aug 3rd she acted like she felt a little better, we were able to get her to eat a little and she was drinking some water. This continued for most of Wednesday, but she also began complaining of pain in her arms and legs. She stayed in bed most of the day, I also noticed that they rash had gotten worse, but did not think too much about the rash and even spoke to our pediatrician about it and he advised that if the rash itched, try giving her Benadryl. He also stated that they rash usually peels when it goes away. Thursday Aug 4th, I went to work but she seemed somewhat better, but still had fever. My sisters-in – law stayed with her that day due to her mother still being in the hospital after surgery. Thursday night my sister-in-law called saying she could not get her to eat or drink anything, and thought she needed to go back to the ER. About an hour later, she called back stating that she was drinking Gatorade (which out pediatrician recommended) and had ate something. Friday Aug 5th my sister-in-law said she was acting somewhat better, but still did not feel good. We discussed taking her back to the ER but she said that she was still drinking some Gatorade and water, so we held off. My wife came home that afternoon and when she checked on our daughter she said that she was very weak, lethargic and wasn’t able to hold her head up, so she and her sisters took her to the ER. When I was able to get to the ER, our daughter was very lethargic, more than the other day when I first took her to the ER, her rash was also worse, her legs, arms, hands, feet and abdomen were swollen as well. About 15 minutes after they got to the ER, I got a text from my wife stating that I needed to contact the ER doctor ASAP. I was still at work as I had picked up an extra shift the day before. When I contacted the ER doctor, he stated that he thought that our daughter had Kawasaki Disease and he wanted to transfer her to Children’s Medical Center and advised that I needed to get off the ambulance (I am a paramedic) as soon as possible. The night of Aug 5th we arrived at Children’s ER via EMS and spent several hours in the ER where they ran several labs tests and did a KUB, as her belly was distended., we were finally admitted to a floor bed in the early morning hours. Aug 6th, several doctors from several different specialties came to exam our daughter and she was finally officially diagnosed with Kawasaki Disease. She was taken for an Echo Cardiogram. They began treatment that night with IVIG (immune globulin) therapy; which is given over several hours. After a few hours, our daughter was awake and talking and acting somewhat normal, but was still very weak. She was also started on high dose aspirin therapy. Olivia’s lab work shows that she is anemic. Aug 7th, Daughters fever returns. The doctors stated that they would do another round of IVIG, so they began this the second night. A few hours after the medicine she was awake and talking; hungry, for the first time in a week. Aug 8th Fever returns that night. Docs discuss next phase of treatment. Aug 9th, she was taken for a second Echo Cardiogram this morning and this time they see changes to the coronary arteries and what appears to be an aneurysm. They decide to begin High Dose Steroids, this afternoon. Aug 10th, fever returns that afternoon late. So 2nd round of Steroids are given. Same thing happens; she is better and awake, talking, coloring, and hungry. Aug 11th, fever returns, so a 3rd round of steroids is given. She is awake, talking and playing. They now watch her for 48 hours to make sure the fever does not come back. Aug 12th no fever. Playing and coloring. I believe it is this day they did a reticulate count to make sure that her bone marrow is making enough red blood cells to replace the ones destroyed by the IVIG. Her reticulate count was very good according to the doctors. Aug 13th no fever, playing, coloring, and eating and drinking normal. Aug 14th, she is discharged with no fever, and instructions for follow-up and several medications. She is still weak and has not really walked at all in a week and a half. So she is very unsteady on her feet. He mother and I are still worried as she is still pale and very weak (she is anemic from the Kawasaki’s) so she sleeps with us in our bed . About 1:15 am her mother wakes me stating the fever is back and it is 102. So we load up and head back to Children’s Aug 15th we spend several hours in Children’s ER and admitted to the floor. However, this time we are on the cardiac floor. Aug 16th That evening they began Remicaid which is an anti-inflammatory medication. This is given over several hours via IV. They started this during the late evening, but prior to this they gave her a dose of Benadryl which made her sleep. She slept through the night, but woke the next morning hungry and ready to color and paint. She still complains of pain in her arms and legs. Aug 17th. This is now the waiting period, to see if any fever comes back. The doctors state that fever is allowed in the first 24 hours after Remicaid, but after that no fever… We have to wait and see. We have a good day and she colors, and paints most of the day as well as watches movies. She finally fell asleep late that night and about 2 am she woke as she wet the bed. When changing her and the bed linens, she grabbed her head and was clawing at her eyes, saying it hurts. Her mother and I were every concerned as to what could be causing this but still had not had the time to do in-depth research on all the medications she was to be given. The nurse was concerned so she called the on call cardiologist resident who came and examined her and ordered a CT Scan. However for them to do this they needed to sedate her, but they were not wanting to do this as if there was anything wrong, they would have to call neurology to come examine her and they would not be able to do this if she was sedated. We asked if they could just use IV Benadryl for the sedation and the on call doctor stated she had to call the cardiology fellow, but when she did call the fellow, she did not explain the entire situation and did not ask if she could use Benadryl for sedation which worked well the night of the Remicaid infusion. Instead the fellow ordered 1 mg of Versed, mind you this max single dose our child could have is 1.8 mg, so they really under dosed her, so when they tried to get her to lay down for the CT, she would not have any part of it as she was not sedated. We tried several times to get her to lay and be still to do the scan, but this was not happening. The CT tech even told my wife that sometimes you just cannot baby them and you just have to make them do things. Yep, you guess it, this did not set well with her and the CT scan was a no go. We took our daughter back to her room. This is now about 0430 am. About 0530 am the Cardiology Fellow finally decides she is going to come in to see what the situation is as she cannot decipher what the Resident is telling her over the phone. So she explains what they plan to do, but she first has to run it by the Cardiologist and see what they need to do. The plan now is to have anesthesia come in to put her to sleep to get a CT scan. By now it is 1030 am and we are all tired, even our daughter as she never went back to sleep after waking at 2 am. The cardiologist finally decided he is going to call the cardiologist that we have chosen for follow-up after care as she is a specialist in KD. She tells them NOT to do a CT, but do and MRI. Her reasoning is that in KD you really need to do the MRI instead of the KD as you not only need the MRI you also need a MRA, and if you are going to have to put the child under anesthesia, you mine as well get the best test you can get. My wife use to work for an ophthalmologist and was concerned about this photo phobia that our daughter has been experiencing after the first round of IVIG. Every since the first round of IVIG, she has complained of any light being too bright, including the TV. When the on call docs discussed this with the KD specialist, she was concerned, as this photo phobia should be diminishing but suggested that they call in ophthalmology to evaluate her. My wife wanted them to specifically test her intraoccular pressure and high dose steroids can increase this pressure and cause narrow angle glaucoma and other retina problems. Thankfully the ophthalmologist exam was good and the pressure was fine. All the doctors agreed to watch her past the 48 hour mark and if nothing else changes they will discharge her the morning of the 18th. We got discharged at 0800am the morning of Aug 18th. After getting home, our daughter took a pretty late afternoon nap, but she was exhausted from trying to sleep in a hospital where everyone hour someone is needing to examine you or take blood for labs or check your vital signs. She woke and decided she wanted to go to her living room as she calls it. Once there she noticed that her decorative throw rug was not where it normally is under her table and chair set. She asked me” who put this right here”? I told her “you need to take that up with your momma”. She walked back to the living room and took her momma’s hand saying “I need to show you something” Once in her room, she asked her momma “did you put this here” pointing to her rug. My wife and I could not help but laugh, she was just so cute when she said it. Her momma answered “yes”, and our daughter stated “it doesn’t go right here, it goes over there, you need to fix it”. My wife and I looked at each other and said, “ I think the Remicaid worked”. Aug 19th, she is still weak and has difficulty walking, but she is balancing better. She hasn’t really walked since Aug 2nd. She is pale from the anemia, but takes a multivitamin with iron and will see her pediatrician Monday Aug 22nd. She goes back to the Cardiologist for her first post discharge/therapy Echo Cardiogram on Tuesday Aug 23rd. I know she still has a long way to go, before she is completely better, but she is much better than she was. We are very thankful for that, as well as what the doctors were able to do for her. We are also thankful that so many people were praying for our little girl.
Posted on: Wed, 15 Jan 2014 22:02:13 +0000
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