The beginning was not really the beginning at all...it was more of an in between. Our daughter Jaiden was a healthy baby girl up until almost 9 months of age and her health seemed to change in an instant.
Jaiden was an easy going 8 month old until we started noticing little hive like rashes all over her body around the 20th of November. We had planned a Thanksgiving vacation to fly to Missouri to see my parents and figured we should go to our daughters pediatrician first to make sure the hive like rashes were of no concern. It was 2 days prior to leaving and the doctor gave us the OK and stated that it may have just been an allergic reaction and prescribed allergy medication. So with that in mind we left the day prior to Thanksgiving with a great flight of no fussiness. The day we arrived went smooth and Jaiden didn't mind the plane ride or the hour and a half drive to my parents home. Thanksgiving day was not the most easy going day-Jaiden started acting unusually fussy, much more rash appearing and was warm to touch, but just thought she was getting a cold from the possible climate and elevation change.
Friday night/early Saturday morning is when the temperatures started to spike at 104 degrees with major rashes/hives everywhere and I was WORRIED. So off the the tiny little emergency room in Sweet Springs, Missouri. We were the only patients at this hour so the doctor had to be called in. As concerned as we were the doctor believed she may just be having flu like symptoms or allergic reaction...with that in mind he gave Jaiden a steroid shot and sent us on our way and advised us to have her on Tylenol and Ibuprofen, and we did just that. Within the 24 hour period-NOTHING changed and we found ourselves back at that tiny little ER with the same doctor and the concern that it may be an infection that is causing this and we were given an antibiotic for her and was told the same as before, but this time the concern that if this didn't change anything again in 24 hours that we had to go to Children's Mercy Hospital in Kansas City (an hour and a half drive) since he is not a pediatric doctor. We then go home hopeful that there will be change BEFORE we have to fly back home on that Tuesday. Being that this was Sunday we figured Monday Jaiden would change, but we were completely wrong-everything stayed the exact same. Now it is Monday night and we are rushing to get to the children's hospital as we had to pack and get ready to fly the next morning after the ER visit. We were at the ER in Kansas City for four hours and the doctor believed that Jaiden had Kawasaki Disease....WHAT? I have never heard of that disease and was shocked that my little girl could have something so rare. The ER pretty much gave her pain medication to get her to be good while flying back home in just a few hours. Let's just say it was the worst first vacation for my baby girl because the flight home was nothing like the flight to Missouri.
The entire time while in Missouri we are in contact with Jaiden's pediatrician and had to go to the office the next morning. Her doctor confirmed that he too believed that Jaiden had Kawasaki Disease and didn't feel comfortable treating her as he has only seen one case in the 37 years he has been in practice. We were immediately admitted to the local hospital. While there over night the other doctor in the practice wanted to look at Jaiden and he too agreed that she had it and must be admitted to a children's hospital for better care. So that next day we were off to the Children's Hospital of Orange County by ambulance. I just couldn't believe in what was happening and how this could happen to our baby?
As soon as we arrived at CHOC and admitted, Jaiden was poked and prodded for everything...my poor baby was exhausted from the past almost 2 weeks of travel, sickness, hospitals and now we arrived late at night and they wouldn't leave her alone. This would continue for the next 20 days. Jaiden was treated for Kawasaki Disease and taken blood for every possible disease, disorder, cancer, etc that anyone could possibly think of. The treatment was IVIG and it was supposed to turn Jaiden's health around almost immediately-which it didn't. All the specialists involved in her case were awe struck and just didn't have any answers for us because all the tests came back negative...nothing was showing any kind of lead in any way-Jaiden was a mystery infant.
The doctors released us on December 22nd with no definitive answers and to just monitor her with a journal and some medications that would keep her somewhat happy. To say the least we were NOT happy with the answers we were getting. So off to home with a hopeful outlook that being home may help Jaiden get back into her old self again. The holidays (her first Thanksgiving and Christmas) was not the ideal holiday's I wanted or thought she would have...they are holidays that we will never forget even though Jaiden will not remember.
The patience that my husband and I had to develop while going through this initial process was very difficult and stressful because we were both in school (him in pre-med classes, and me with my graduate classes), working, teaching and coaching. Jaiden of course came first and everything else was last, but the stress to perform at a level one is used to can be very trying to the most successful person in this type of situation. We figured this was not over since no answers were given and multiple appointments with the specialists (Oncologist, Cardiologist, Rhumetologist, Hematologist, and Infectious Disease) were given as we left. This was going to continue until someone figured something out!
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