Dancing in the Rain.

A friend posted this on her facebook page this morning, and I just had to use it. We have spent the past 8 and a half months waiting for this "storm" of Simon's transplant and recovery to pass. It seems as though we get through one crisis, only to be hit with another.

Last week, Simon had his last dose of steroids. The general consensus was that off the steroids, Simon would start to feel better. His strength would return. The swelling all over his body would gradually go away. His blood pressure would return to normal. He would start to feel good again. We would be able to start thinking about moving back home, only 8 month after his transplant.

Two days after being off the steroids, he developed a low grade fever, bladder issues, and felt generally miserable. Three days after steroids, we were back in the clinic. Simon was put on lasix for the swelling in his feet and told to up his intake of fluids. We were home through the week-end, and back in the clinic on Monday. No improvement. The nurse practioner looked at Simon. "Simon, you look miserable. Go home and don't call unless you have a 'real' fever." As opposed to a fake fever? Does she think I am holding his thermometer over a heat lamp to get a high reading?

Wednesday, we were back at the clinic for a scheduled visit and his monthly IVig, which is a 4 hour infusion. Thankfully, his regular doctor also checked Simon out. Dr. Quinones is awesome with Simon, and NEVER discounts any of my concerns. (Amazing how quickly the doctors and nurses earn a warm place in this mother's heart, simply by listening to me. Just as quickly, those who don't listen, or brush off my concerns end up on my 'don't like' list.)

Dr. Q thought that Simon, being so sensitive to the steroids, was having trouble producing cortisol, the stress hormone. He put Simon on oral hydrocortisone, and expected him to immediately begin feeling better. The next morning, Simon did seem to perk up a bit. It lasted about 30 minutes before he was back in bed, feeling cruddy.

That brings us to today, Friday. I called the clinic about a prior authorization that was needed for one of Simon's meds. Julie, one of my favorite people in the entire world, looked up Simon's file, when I told her he was still miserable and asked how long it would take for the hydrocortisone to make a difference. The results for Simon's bk virus finally came back, and his levels are through the roof. She said it is no wonder he is feeling so lousy.

After 2 weeks off of Cidofovir, Simon needs to be back on it, and it needs to happen on Monday. Cidofovir is the IV antiviral that is toxic to the kidneys. Simon needs to take 3 pill, 3 hours before he gets his Cidofovir, just to help his body flush out uric acid. Then he gets to take 1 of those pills 2 hours after the med, and another one 6 hours post med. He also gets a huge bolus of fluids an hour before the IV med, and another one after the med. Did I mention that this antiviral is toxic to the kidneys?

This week, I have had several people ask me what I do to take care of myself. Taking care of Simon has been a 24 and 7 type of a job for the last 8 months. I love my son and wouldn't have it any other way. That being said, I really do need to learn to dance in the rain.

When we were home 3 weeks ago, I rented a viola. (Sorry Brent's Place neighbors.) I had played, off and on, for 2 years, before we learned that Simon had to have a transplant. It was one of the first things to go as we prepared for this journey. I play for me. It helps me relieve stress and makes me feel good.

This journey has taught me how important it is to live life to its fullest. No more reading about things I want to do, and dreaming about things I want to learn. I have to look for ways to get out and do things. In December, Ezri, Beau and I had our first English riding lesson. Life kind of got in the way for the next two months, but today, we had lesson number 2. We were dancing in the rain, through the storm. (Technically, we were riding, not dancing. Also, it wasn't raining, but you understand what I mean.)

I will "Look back and thank God. Look forward and trust God. Look around and serve God. Look within and find God." (In an email from a friend.) I can look back on all we have been through, and thank God for being my strength when I am not strong enough. I can look forward and trust God to continue to heal Simon and to provide psychically, emotionally, and financially. I can look around at all the examples of service God has placed in our lives, and learn from those wonderful people of ways to help others. I can look within, through my viola, through riding lessons, through those brief moments of calm, and find God. I can learn to dance in the rain!