I realize it has been a super long time since I have blogged anything but I think it is time I get back into it. Hopefully I will be able to post more often but we will see with school and family and well, the rest of life..
I wanted to share a major event that happened recently to our little family..
On August 30th little miss Lila came down with a pretty high fever.. Now as most parents know, children get fevers, often. I decided I would go to my math class that evening and see how she was doing when I got home. She stayed with Hercules and I called on my way home only to hear Lila screaming and crying in the background. As you may know from my previous post, Lila has something called VUR and when she gets a fever she has to be seen right away in case she has a UTI. After a call to my mom for some more experienced advice we decided to take her to the emergency room.
When we got to the ER they sent us into a room and did a catheter to see if it was indeed a UTI. The results came back normal and they sent us home and told us to see our pediatrician. The next day she wasn't eating or drinking anything and we began to get a bad feeling about it all so we took her to see her doctor. They did another catheter and checked her ears, nose and throat. Once again, everything came back normal. Our pediatrician told us to come back if the fever was still there in 5 days. Since she was not drinking anything we were told to force her to drink out of a syringe until she would drink on her own. After about 24 hours and on the brink of dehydration Lila finally started drinking on her own. We made it through the rest of the weekend with a lot of tylenol, Bubble Guppies (Lila's favorite show) and a lot of sleep.
Tuesday came and brought a fever along with it. Now when I say fever.. I don't mean like 101. Her fevers were getting as high as 103. The strange thing was that it was her only symptom. We took her back to a new doctor as her's was out of the office. She seemed very confused and decided to run some different tests. Lila had her nose suctioned out with this crazy machine and then had to have a chest x-ray.
Hercules took her to do the chest x-ray as I was already getting drained watching her feel so bad. I waited in the hall and could hear Lila screaming "MOMMY, MOMMY!" it was one of the most heartbreaking things I've ever heard. After all of that we had to take her to get some blood drawn. I just have to say, I have the sweetest little girl ever. After they drew her blood she said through streaming tears "Thank you, Sorry." to the nurses.
We took her home and waited.
The fevers continued and on Thursday her doctor's office called to give us the results of the blood work. She said there were a few things that were unusual and that she would talk to the dr. to make sure it wasn't anything serious. After a few hours of not hearing anything I called the office back because Lila's fever was up to 103.2 again. The nurse told us the doctor wanted us to go to the ER immediately for more tests. Now, hearing your dr. telling you to go straight to the ER is very unsettling. We had no answers, not even "it could be.."
We took her right to the ER and had a 2 hour wait to even be seen. Once we were back in a room one of the doctors came in and basically told us they would need to do more blood work and that he would consult with the on-call pediatrician. We waited and waited and finally they came to give her an IV and draw some blood. We have been through this process before and trying to give a baby/toddler an IV is really hard.. it usually takes 2-3 times to actually get one to take. After two tries we finally had success.
The pediatrician came in and told us that it could just be a virus but that it us very unusual for them to last longer then 5 days. He mentioned something called Kawasaki's Disease was a possibility although she really didn't fit the symptoms (more on that later)
We were told that her white blood cell count was at 30, up from 20 the day before. An average white count would be somewhere between 6-14. They knew she was fighting something but the problem no one could seem to solve was what it was. They did more blood work and another catheter to officially rule out a UTI. After about 10ish hours in the ER we went home with instructions that her regular pediatrician would call us in the morning with results.
Friday morning we got a call around 9:30 from the pediatric office. We were told that Lila needed to be admitted to the children's unit at the hospital. This was not the news we wanted and I really started to get worried. If the doctors were worried, something was wrong.
When we got to the hospital we were greeted by a bunch of amazing nurses and a new pediatrician. At this point, Lila was terrified of anyone in scrubs or pretty much anyone she didn't know. It didn't help that they all had to wear masks and these horrible yellow gowns because they hadn't ruled out something contagious.
They gave Lila a new IV and decided to do an ultrasound of her kidneys to make sure there wasn't an infection that they weren't catching. Well the ultrasound came back perfectly normal. They had sent the urine from the night before for a culture. They drew more blood and at this point were fairly sure that she just had a UTI that wasn't being detected so they started her on IV antibiotics.
This is where everything starts blending together...
Over the next 3 days she had fevers, IV's, blood drawn, and another nasal swab because they messed up the first one.
By Saturday night the urine culture still hadn't grown anything and by this point none of the 11 or so doctors knew what was wrong with our sweet girl. They referred to her as the "mystery child", which was not very comforting for us.
This was when we heard the diagnosis Kawasaki's Disease again. But this time it was much more serious.
A brief explanation of Kawasaki's Disease: A rare disease (1 in 100,000). Unknown cause. Causes the arteries to swell and may cause anyeurisms. Children may experience heart attacks around age 2-3.
The problem was, Lila didn't fit all the necessary criteria for treatment. Kawasaki's usually presents with all kinds of obvious symptoms. In 95% of cases children present with a rash, swollen red tongue etc. Lila had all the lab findings but that was it.
Kawasaki's must be treated within 10 days of the onset of a fever or it is not effective so the doctors called the Infectious Disease office and a cardiologist and decided it was best to treat.
The treatment is called IVIG. It is basically and IV transfusion of antibodies from 10,000 or so people. It is a blood product and a pretty serious treatment. Also high doses of asprin are given.
We decided the risk of heart attacks and anyeurisms was worth the risk of treatment so we started her on IVIG Sunday night. Lila had some pretty awful reactions to it. She threw up, got incredibly tired and very irritable. IVIG causes headaches and migraines and we had to give her tylenol to help her feel better.
Tuesday morning she had an echocardiogram to see if there had been any damage done already.. luckily the answer was no.
We were finally sent home Tuesday afternoon and Lila is doing much, much better. She is back to her normal happy self. She has two more echo's scheduled and is on a small dose of aspirin everyday.
All in all, Lila had.. 2 needle pokes in one foot, 1 in the other, 1 in her ankle, 2 in one arm, 2 in one hand, 3 in the other hand and 1 in the other arm. She had 2 fingers pricked, a throat swab, a nasal swab, a nasal suction, 2 chest x-rays, 3 catheters, countless blood draws, and an echocardiogram. After every single one of those she said "Thank you". She said please for everything and was the bravest person I know. By the end of all that I couldn't help but cry, I was so drained of all my energy, trying to stay happy for Lila and making sure she wasn't so scared. Even I couldn't handle all they put her through and she did it all. I think she knew we were trying to help her even though she couldn't understand what was going on.
I am so thankful everyday for Lila and my family. I am constantly reminded that it can all be taken away in an instant. I am also incredibly thankful for the countless doctors and nurses who took such good care of us and also for modern medicine.. without it my little one may not be here to grow up.
