When Your Heart Hurts...

So here I am again, sitting in a hospital late at night (or early in the morning depending on how you look at it) with my daughter sleeping soundly on my chest. This time she isn't quite as small...or as quiet. She snores sweetly with her mouth wide open and her face completely relaxed. Under different circumstances, this would be one of those moments I would cherish forever.

Instead it is another moment in the nightmare that has been my week. It started with a phone call last Friday from daycare stating that Gracelynn has gotten up from nap with a slight fever. I went and picked her up and when we got home check her temperature. It was 102 degrees. We gave her some Tylenol and went on as we do with any cold or virus. By Saturday her temperature was spiking in between Tylenol doses as high as 104 degrees. We decided to give her a luke warm bath to try and help her find some comfort. At that time we realized that the majority of her body was covered in a nasty looking rash and the whites of her eyes had turned a pinkish-red. That evening we called the on-call nurse offered through our pediatricians office. They reassured us that it was most likely just a virus and that unless her temerature went above 105 or other symptoms developed we should just continue to treat the fever and make her comfortable.

We made it through the weekend and by Monday morning her fever had not gone down and her rash was worse. We decided to take her to the walk-in clinic at our pediatrician's office first thing that morning. We know God was looking out for us because our pediatrician just happened to be the doctor working in the clinic that morning, so we saw a doctor that was familiar with Gracelynn and her medical history. It was somewhat disheartening to see that he too was perplexed by what was going on and he didn't hide the concern on his face. He ordered a finger prick test and asked us to come back the next day. At the very end of the exam he mentioned an illness called Kawasaki Disease. He said she did not meet all the criteria for it, but it was something they would continue to watch for.

We returned the next day and she was no better. Dr. Bush ordered a blood panel and urinalysis to help rule out several other infections. He also decided to go ahead and give her an antibiotic shot to help in the event of a bacterial infection. That evening she became very listless and was unable to walk on her own. I knew that this was most likely due to the fact that she had not eaten since the previous Thursday, but as a mom all I saw was my vibrant, independent little girl fading away. The next morning we called Dr. Bush immediately and told him of the recent developments. Fortunately, he took these things just as seriously as we did. He ordered a chest xray to rule out pneumonia and then asked us to return to his office for a third visit.

At this visit, Dr. Bush told us he was advising us to admit her to Children's Mercy Hospital in downtown Kansas City, MO. We did not hesitate...YES! Please do whatever is neccesary to help her! We did not get admitted until the following afternoon because of a lack of beds in the hospital (it is a very good hospital and a very sick time of year). Once there, there were many nurses and doctors that had to look at Gracelynn, all the while she was running a temperature of 102.8. Finally she got some Motrin and the Attending Physician for the Infectious Disease Unit was able to see her. Based on Gracelynn's physiological and lab markers, she diagnosed her with Kawasaki Disease.

So what is Kawasaki (KD)? It is a vascular disease that causes the arteries and blood vessels to become inflamed. Gracelynn's little body has been working for the past 7 days trying to fight that inflammation. The illness itself has many symptoms but the scariest part is the potential result of KD if it is left untreated past 10 days of fever. It can cause lasting effects on the heart, in particular the coronary artery. Gracelynn has already had one echocardiogram and will have a follow up echo in 6 weeks.

So at this moment, as my little one sleeps soundly, she is hooked up to a heart monitor, a blood pressure machine and an IV drip that is feeding gamma globulin (purified antibodies) into her blood stream. It is a 12 hour treatment and then she will be observed for 24 hours to ensure that her symptoms do not return. We have a little bit of a road ahead of us, but I am just so grateful for God's protection, the wonderful doctors and nurses and for the prayers so many have offered up in Gracelynn's behalf.