A week into Dylan's transition we were enjoying not having to fast before and after his medication. Dylan could eat and drink whenever he wanted. There were no tears throughout our day due to being hungry and having to wait. After two years of the same routine it was a breath of fresh air. Dylan was really enjoying his new found freedom. At this point Dylan had been getting labs twice a week and like I mentioned before they were beautiful. Day nine was a different story. I always open the results online with one eye open. It seems nerves always get the best of me at that moment (I am not anticipating it will get any better). My heart sank when I saw the numbers. Over the past almost eight years I have become an expert at deciphering lab results. I knew in that moment something was up. I immediately called the on-call GI at Lucile Packard. I wanted to make sure that whatever was going on was caught early. My gut was telling me that is was not something small and should not be ignored.
I spoke with the doctor letting her know what was happening with his labs. She too felt like we should repeat labs the following day just to follow them and see which way they were going to trend. We had decided that doing them locally would be fine as they were not at a dangerous level. I am sure some of you are thinking that you would never know what to do in these situations, but let me tell you, a parent's intuition is a very powerful force and near impossible to ignore. After about an hour I received a phone call from the doctor again. She had spoken to the attending and he felt it was necessary to do labs at their center so the results could be looked at prior to the the holiday weekend. So I went to bed to prepare for a very long day.
It was a very early 6 am wake up call. Tegan, Dylan and I got into the car and started the trek down the freeway. It really doesn't seem like that far, but it is such a long stretch of road and commute traffic only makes it worse. I guess the one good thing about driving early is the kids usually go back to sleep; making it pretty peaceful in the car. It took nearly two and a half hours to get there. Once we arrived we got labs done and I went to get some food for the kids. I wanted to stay close by for a few hours just in case they decided to see us if labs were bad. At about 11 am I decided no news was good news and drove home. I knew that it was a long weekend and spent most of the afternoon calling our coordinator to get results. With about 20 minutes until the office closed Noah finally got a hold of her. The coordinator told us the labs were great. When Noah asked for specific numbers we quickly realized that her idea of great and ours were very different. Noah demanded that she speak with his GI and get back to us. When she called back she told us to repeat labs again on Tuesday (Monday being Memorial Day). I was pretty nervous to wait since his numbers were creeping up each day.
Tuesday morning could not come fast enough. Dylan has been feeling pretty good despite acting a little goofy from all the steroids, but the fear of what was going on inside of him killed me. After his blood draw, the day dragged. It wasn't until after eight that we finally got the results. It was a nightmare realized. Seeing numbers ten times higher than what they should be is never a settling feeling. Knowing your child's vital organ is angry is even more so. I again called the GI on call to get a game plan. I was told that in the morning they would discuss Dylan and that I would be called with a game plan. I waited and waited for a call. Noah and I emailed and called multiple times to get some sort of plan. The key word is waited. All day long. No response. I emailed our regular coordinator who is out of town making my feelings on the lack of phone call well known. It was no shock that in a very short time frame after that we received a long awaited phone call.
Surprise, surprise...Lab work and clinic the following day at Stanford. The doctor also wanted Dylan to take a very hefty dose of Prednisone as well as restarting the Prograf. There was an instant feeling of defeat. My poor baby was having to take two huge steps back and the joy that he had from his recent freedom was being taken away. Dylan deserves a break. He has been through so much in his life. I told Dylan what the plan was and I could see him fighting back the tears. I too was fighting back the tears. Sometimes life is just unfair. Sometimes bad things happen to good people.
Today we made another trip to Stanford for repeated labs. We were pleased to hear today the the Prednisone and added Prograf helped to drop his labs almost in half. Sadly, we learned today that the doctors are certain that Dylan is in rejection. They believe that his Prograf may have been weaned too aggressively. For now our only plan is to get his liver happy again. His doctor wants labs normal by next week. If they have not improved Dylan will be admitted for IV steroids. We hope that this is not the case and come Monday everything looks much better. As always, thank you from the bottom of our hearts for all your love and support. We could not do this without you.