I took my daughter to see her specialists at Children's Hospital in Birmingham, Alabama. It was a nice road trip and a chance for us to have a "girl's day" together. I tried to make the best of the experience and I hope I succeeded. We had a couple hours to do whatever we wanted before the appointment and so we ate at a Waffle House and then visited the gift shop at the hospital. They had a lot of cute things. I bought her a Hello Kitty ring with lip gloss inside of it. She loved that!
We signed in early, but it still was a long wait for us. We waited for about an hour. I thought it was a bit ridiculous! When the doctors finally came to the room, they still seemed baffled about everything. They explained that everyone they talked to and consulted with did not know exactly what course of treatment, if any, we should take. Since the liver enzymes were elevated last time, they were concerned. They basically said that at this point it was a matter of WHEN and not IF she was going to need a liver biopsy. To make things worse, they told me that when you do a biopsy on a child they have to keep her overnight for observation because of the risks including bleeding. I didn't like the news. It seemed a bit risky, especially when she seemed so healthy. They further explained that if her liver enzymes continued to rise then they needed to find out if there was copper accumulating in her liver before she showed signs of jaundice and other liver damage symptoms. At this point, we were going to do her bloodwork and if her liver enzymes did not change then we would continue to see them every six months and recheck her urine and liver enzymes.
I have to admit that I felt a bit lonely after hearing the news. I am not sure if I can explain it in words, but I will try. Before, I could sense a bit of urgency in trying to find information and figuring out what to do with Sarah from the doctors. This time it was different. It was as if they had forgotten about her, we showed up, and then they quickly reviewed the chart, and gave me the same "story" that they gave me before. The exception was that this time they threw me a "curve ball" with the biopsy suggestion.
After we met with the two doctors (which was approximately five minutes each ... possibly less)we went to the lab and got her blood work drawn. I have to tell you about the lidocaine cream (you can request the prescription from your pediatrician and get it at your local pharmacy). It's a miracle cream for us. Before I found it, my daughter would be so anxious about getting her blood drawn that I would have to hold her on my lap and press down on her legs to keep her still. It was an ordeal. NOW... we go and she's happy and tells everyone that it's only going to hurt a little bit. Today she actually told me that it didn't hurt at all. I was glad. It's very easy to apply. You put a thin layer over the crease of her arm (where they will draw the blood) and then cover it completely with an occlusive dressing to keep from evaporating before taking affect. It takes approximately 15-20 minutes, so you need to time it accordingly.
On the drive home, my daughter fell asleep and so I was left alone in my thoughts. Of course, all I could think about was her laboratory results. They would determine whether she would need a biopsy or not. It was torture not knowing. All of a sudden my cellphone rang and it was the doctor's office. The nurse said that the results had come in and that she had some good news. Her liver enzymes had improved!! I was excited and overjoyed! It was better than Christmas. I thanked them for calling and the rest of the ride was wonderful.
Keeping my sweet daughter healthy is my utmost goal. I will go to the ends of the world in search of treatment and answers. Luckily, whatever we are doing is working, and it seems my answers have been just a prayer away.
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Although doing nothing seems the
easy thing to do... having no
answers is definitely harder.
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