11/29/2009

Remembering Kawasaki's Disease

One year ago today we were sitting in the E.R. at Scottish Rite (for the second of four times in two days) with a VERY sick baby girl. Eliana was a tiny 14 month old and wasn't even walking yet. She had begun to run a fever just before Thanksgiving and, even though we were alternating Tylenol and Motrin like our doctor taught us to, it just wouldn't break. She was sleeping a lot and when she was awake she was lethargic and just wanted to lie in my lap. Scotty took her to the doctor the day after Thanksgiving and he diagnosed her with an ear infection. I was doubtful because she had never had one before and was not touching her ears. She didn't seem to be in pain. Two days after Thanksgiving we were at my mom's house having dinner with the whole family and Eliana slept right through the meal. When I finally got her up mom and I noticed a rash on her belly and legs. It wasn't that bad and she has always had a bit of eczema, so it wasn't really cause for concern. We couldn't get her to eat anything and she hadn't really eaten much for the past four days. That was cause for concern. Luckily I was nursing her two to three times per day so I still had milk and that is the only nutrition we could get her to take because of the comfort it brings. So I went and nursed her. Shortly after she began to vomit. So we headed home and called the doctor. He advised us to take her to the hospital.

Scotty loaded her up and off they went on the almost hour drive to Scottish Rite. They were there all night and got home around 5 am. The ER doctor called just as Scotty was walking in the front door and said the nurse was NOT supposed to send them home. He said Eliana was dehydrated and needed IV fluids and to bring her back. We dropped off the older children with my sister and headed back to the hospital. They took a urine sample and diagnosed her with a urinary tract infection, but said her ears were fine- NO ear infection at all! I knew it! But again, I was skeptical because she has never had a UTI before. So they put an IV in and begun to give her fluids. The doctor said she would "pep up" within and hour and be ready to go home. I wanted my baby to pep up so badly. She had been pitiful for days by now and I was ready to see her smile again. Well, one, two, three hours went by and no pepping. So finally they gave us a prescription and sent us home with a NOT pepped up baby (despite my objections) She was lying there on the stretcher not moving and looking just awful and the doc walked in and said, "Wow! She's looking MUCH better already!" I looked at him like he was crazy because I was just thinking the opposite! I told him she was looking even worse to me. But he sent us home anyway.

By the next morning a new symptom had begun. Now Eliana's lips were cracked and bleeding. I called our pediatrician and the phone nurse was a life-saver. She had worked at the children's hospital for years and as soon as she heard of all the symptoms she said that my baby probably has Kawasaki's Disease and we need to get her back to the hospital right away. She went to check with the doctor and then they sent us back. We had to rush out. I had never heard of this disease and it was SO scary to hear that your baby has a disease! We called family and everyone started googling it like crazy.

When we got back to the ER they took us back right away- no waiting this time. Eliana had lost two pounds by now. Her heart rate was very high and her fever was still raging. The doctor came in to see us (a different doctor) and explained to us that she did NOT have a UTI, but that one of the symptoms of KD is white blood cells in the urine which usually means UTI, but that no culture had grown in the urine sample. So there was no infection there. He explained that Kawasaki's Disease is difficult to diagnose because the symptoms are similar to other common illnesses in children, but when all the symptoms are present they can finally diagnose and treat it. This can take several days. The symptoms include a high fever that does not respond to medication, rash, white coating on the tongue (she had this too which had me baffled), cracked and bleeding lips, white blood cells in the urine, and listlessness. She had them all. They explained that the treatment is called Intravenous gamma globulin or IVIG. It is purified blood antibodies administered through iv. Because of the KD Eliana's blood vessels were swollen and inflamed, so it took over TWENTY needle sticks before they finally got an iv in. Scottish Rite brought in their iv team. They used an ultra-sound machine to find a vein. They were about to shave a patch on her head and put the iv there when they tried one last time and finally got one in her arm. That was terrible to watch. She was in so much pain and could barely open her eyes, but she was crying pitifully as they stuck her over and over in her little arms, hands, and feet. In the end I was crying too. So finally they took us up to a room and checked us in. I was anxious for the treatment to begin because she was getting worse by the hour. They told us that all of her joints were inflamed and swollen which is why she was lying perfectly still. It was painful to move her, so we didn't want to hold her because it caused her pain.

The treatment began around 1 am and the doctor told us she would improve through the night. They administer it for 12 hours. We watched her for awhile and she began to look worse and worse. Her face and eyes were swelling so much that she was unrecognizable. I expressed my concern to the nurse who found the doctor (this was at 3 a.m.) who came in to talk with us. I was in tears. By now we had had so many misdiagnoses that I was beginning to doubt this one too. Why was she still looking worse even after two hours of treatment? But this doctor was very kind and she explained that she had seen this happen before. She assured us that Eliana was going to improve. We reluctantly tried to believe her.

It took two days for Eliana to begin to improve. Because I still had milk I was able to feed her. It was the only nutrition she was willing to accept and this seemed to be a huge relief to all our nurses and doctors. She wanted to nurse every two hours or so like a newborn, but I was glad because I got to hold her. It was painful for her to be picked up and moved, plus she was hooked up to so many cords and tubes, but we managed to nurse somehow- every two hours or so.

Scotty and I slept on a tiny couch/bed that was designed for one person and ate hospital food and stood by that metal hospital crib for five days. We watched our baby get worse and worse and then better and better together. We tried to comfort her the best we could. Scotty comforted me when it got so hard that the tears over flowed. One of those times was when they had to do an ultra sound of her heart. The lady rolled her machine in and flipped the baby onto her back. Eliana was in pain and afraid and tried to cry the whole time. It was taking so long and it was just so hard to see her very upset and in pain. Scotty leaned to my ear and whispered, "Why don't you walk down to the lobby." I did. When I came back she was in Scotty's lap drinking from her cup!! I was SO glad to see her drinking!

Her heart was looking good, but she would have to be on HIGH dose aspirin therapy in the following weeks to protect her heart. Finally, she began to look and feel better. We even loaded her up in a wagon a few times and rolled her down to the lobby to see the aquarium. My mom and sister came to see her and Mippi was able to get her to take some bites of a banana- her first bite of food in a week! She couldn't lift her head, but she followed us with her eyes and nibbled her banana if we put it to her mouth. Micah, Sunny, and Mippi made her some colorful decorations to look at which we hung from her crib.

Day four after treatment she was feeling quite perky and spoiled. By then she was having a hard time getting to sleep because we were in the room with her. We ended up rolling her up and down the halls in a hospital bassinet trying to get her to doze off one night. By the time we took her home she was quite spoiled. The only thing she wanted to eat from her hospital trays was the dessert and because we just wanted her to eat- we let her! After five days in the hospital they let us go home.

They told us that if her fever begins to return to bring her back in because some children need two IVIG treatments. Sure enough, the day we got home, here came the fever again. This time it was much lower, but we didn't want to take any chances. We called and they told us to bring her back. She got a second IVIG treatment that night. It was a Sunday and the Infectious Disease specialist was not there so they went ahead and did the treatment anyway. This time they put the iv in her foot- which was SO much better. The next day the specialist told us that she hadn't needed the second treatment . The fever was most likely from a virus that she had picked up from the hospital. She said the second treatment couldn't hurt her and on the contrary it was an immunity booster. So we went home again, this time after two and a half days.

Eliana slowly got better, began walking shortly after, and had a great big growth spurt- gaining 8 pounds in just 3 months!! She completed her high and low dose aspirin therapy and went for her follow up EKG six months later which was normal. On cold mornings her joints seemed a little stiff and sore for awhile. But today she is a healthy girl. We don't see any side affects from her ordeal.

None of our children have ever been sick like that before. We have never even had any one's tonsils out. So we felt helpless and afraid as we had no choice but to put our child's best interest in the hands of the doctors and nurses at the hospital. It is hard to trust strangers who don't even love your child. But they took excellent care of all of us. We are forever grateful to them. We saw many people there whose children were very very sick and we felt humbled and blessed to be going home, after only one week, with a healthy child who was on the mend.


Feeling bad before we knew how sick she was. This was a few days before her first trip to the hospital.

Lying in the ER getting her iv fluids. This was before her lips started to swell and bleed.




During her IVIG treatment. She doesn't even look like herself.




This was taken during the ultra sound of her heart. She was very uncomfortable lying on her back.

Mippi visiting her sweet baby.

Mippi got her to eat some of a banana- her first solid food in a week!


She was starting to feel a little better. Looking at pictures of Bubba and Sissy. She really missed them.
The swelling had started to go down and her mouth finally stopped bleeding.

Looking at the fishies. We were here in the middle of the night a couple of times.


I couldn't believe she would keep her mask on! She wore it for her wagon rides- whenever we left our room.

All better! Here she is healthy and happy a few months after getting out of the hospital.








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