The Important Things

     We all go through our daily lives focusing on what is important to us and striving to achieve happiness based on our accomplishments. The things that are important vary from person to person and only we can decide for ourselves what we want that makes us feel complete. Some people search their entire lives without ever finding true happiness, and for them I feel sad. As for me, my goals seem to change often, and I find myself getting gratification from the small things in life that others take for granted.

     The end of July was no different than any other time. I was working quite a bit while trying to balance my home life. Then, as things can abruptly do, my life changed. The last few days of July would alter the rest of my life. On Monday, my family had a memorial service for my Aunt that passed away suddenly. A tough day for sure, no need to pile anything else on at this point. My daughter Julia, which just turned 14, has spent the majority of her summer being sick. Symptoms that we couldn't really pin down. Fatigue with aches and pains, fever every night in the range of 102 to 103. Loss of appetite and weight loss. She just didn't look well to us. We had her down at the doctors office numerous times trying to find out what was wrong. Our doctor decided to do a full lab panel testing for everything, the problem...results will take time. In the meantime, we noticed that she was having problems with inflammation and swelling. She was placed on Predisone that seemed to act as a temporary quick fix for a few days at a time, but she would relapse back into her sickness soon after. We wondered....Mono? Tick Fever? Our doctor tried to arrange an appointment at Childrens Hospital, but it was taking a long time, and she was getting worse.

     So early Tuesday morning, after a night of fighting a fever of almost 105, we took off for the ER at Arkansas Children's Hospital. The ER physician looked in the computer and saw she had an appointment scheduled in about a month in Rhuematology. He called up and they wanted to see her in the clinic right then. She met with a doctor there that had an idea, but wanted to make sure. So here is where we sub the music montage showing countless hours of x-rays, lab work, EKG's, and echo cardiograms. A 45 second clip, maybe to the tune of the A-team. About 7 hours later, sitting in the doctors office, the bomb drops....she has Systemic Lupus (SLE). Lupus....what the Heck? All I know is that my daughter is sitting here feeling like she has gone 3 rounds with Mike Tyson, and I have to wrap my mind around that?

     So, for those of you that don't know, Systemic Lupus is an auto-immune disease in the same category with Asthma, Arthritis, and Leukemia. Her body is attacking itself, thinking it is the enemy. She is anemic, hypokalemic, has swelling joints and aching muscles. Fluid around her heart and possible compromised kidney function, and that's just to start with. There is no cure for Lupus, you just learn how to deal with it everyday just like you would with diabetes.  She was pretty well informed that she can lead a normal life, as long as she can live with pain and discomfort, and fever all the time. That some days will be good, and some days not so good. We will just adjust as time goes on. We still have a lot to learn. They wanted to admit her to the hospital to address several issues, but we were able to convince them to let her go home at night if we would come back everyday for treatment. So Wednesday, Thursday, and Friday were spent at ACH getting IV's infused. Almost immediately, we saw an improvement in Julia's condition, talking and eating, and talking. She has since been having problems again and had a trip to the local ER for some respiratory issues, but we are hoping for the best. Julia is learning, as am I, that we have to manage this thing everyday.

     All this just to lead up to my point for the day. This diagnosis has helped to put things in perspective. It dawned on me that I was late in the game. I sat in the lobby of Arkansas Children's Hospital with my oldest son and daughter enjoying a Dr Pepper and just talking. We were just one story, a page in a very large book that was being written right before my eyes. Hundreds of people streamed in and out of the hospital through the front doors. Some walking with their kids, some carrying their kids, others pulling them in wagons or strollers. Some parents entering and leaving the hospital on their own because their child was to sick to leave.  I remember looking out the window at all the cars driving by on the interstate, and thinking what could be more important in this world, besides what is going on in this building. That just a few days ago I was one of those just driving by blindly, not giving a thought to the tragedies and miracles that are going on everyday within the walls of Arkansas Children's Hospital. Yes, I do work in Emergency Medicine, and I do have an understanding of patient care, but its different when your on the other side, at the mercy of the doctors and staff.

     There is one thing that I do know in light of the recent events. I am very fortunate to have a great network of friends and family that have offered numerous prayers and help with anything we may need. Every single person that has reached out to us over the past couple of weeks, I want you to know we appreciate every word of support, it means a great deal to my family. We respectfully ask for continued prayers as we try to stabilize this illness and learn how to best control it. Julia is a great girl and her smile and well being mean the world to me. Again, thank you all for understanding and God bless you.