Dylan had a good run. It was just about four months with no major issues, good labs and boring doctor appointments. Just the way we like it around here. However, we made the mistake of getting too comfortable. Dylan has always liked to keep us on our toes and test our skills from time to time.
It was an average night in the Levy house. I had Tegan in her crib (no, she doesn't sleep there all night or even sleep all night for that matter) and Dylan had just fallen asleep. I went to check on Dylan as I always do. I immediately got concerned when I noticed that Dylan was not sweating. I know I sound neurotic but Dylan sweats at night and when he isn't sweating it is a sign of bad things to come. He didn't have a fever so I went to bed but was a little worried. The next day Dylan woke up and noticed he had wet the bed while he was sleeping. This is very unlike Dylan. From the moment he switched from diapers to underwear he has NEVER had an accident with the exception of right after transplant. A phone call was made to his pediatrician and a urinalysis was ordered. We are always very cautious with Dylan and it has always proved itself necessary. This time was no different.
It took a few hours for the results to come through. I love Kaiser ..I get an email whenever his lab tests come through and can instantly see results. I never have to wait for a call from his doctors and I always get to see every result with my own eyes. It is a really great way to stay completely involved in Dylan's care. The results were shocking and terrifying. Dylan had bilirubin and protein in his urine. What? How could this be? For those of you who don't know there should never be bilirubin in urine and protein while normal for small quantities to show up should never be in high concentration and more importantly not in a transplant patient. I called Dylan's GI doctor and his transplant team. So here we were two days before Thanksgiving, a major holiday, and Dylan was having issues. His transplant team wanted us to drive down to Stanford for labs, repeated urinalysis and clinic so he could be checked out. This way if there was something horrible going on we could address it right away. Noah and I spent a good part of the night Google-ing possible causes for Dylan recent test results. Words like cirrhosis, carcinoma, liver failure, kidney failure all popped up. Needless to say we were pretty worried.
The next morning we got up, got some things together and made the trek. It being a holiday week, traffic was pretty light. We did labs and went to get some coffee and breakfast. Awhile later we got a call from our coordinator and went back to the clinic offices to go over results. With the urine specimen they collected it did not show protein but this time there was blood present. The topper to it all was that all of his liver tests were elevated. Something was definitely going on inside Dylan but it seemed as if the doctors were unsure just what. The decision was made to send us home and repeat labs the following Monday (5 days later). They also wanted to repeat the urine test two weeks later. As always, it is beyond irritating not having answers and knowing things are off/bad but I was happy that Dylan would be home with his family for the holiday.
Monday arrived very slowly. I took Dylan for labs locally at Kaiser and also kept him home from school that day. If Dylan was fighting something or if it was his liver I didn't want to add insult to injury and expose him to more germs. Now when we have blood work done here it takes about eight hours to get results. It was about 7 pm when they started rolling in. I noticed that part of his white blood cell count was incredibly low. The neutrophil count was well below normal putting Dylan at serious risk for bacterial infection. I could feel my stomach doing flip flops. I had a sinking feeling that the rest of the results were not going to be good. Sadly, I was right.
Every result that was elevated 5 days prior was nearly three times higher this time around. I made another call to Stanford to see what the game plan would be. I spoke with the on call GI who then spoke with the attending doctor. Dr. Hurwitz was the attending on that night. She is one of my favorites, not to mention very familiar with Dylan too. She wanted repeated labs the next day and to see him in clinic. We were informed to pack a bag and plan on being admitted. I spent a good portion of the night doing laundry and packing bags for all of us. I straightened up the house and got my ducks in a row. Maybe an attempt to get some control over things or to at least feel that way. It was after midnight before Noah and I went to bed that night. The anxiety and fear really is hard to shut off. It is almost impossible.
The long night made for a very early morning. We dragged ourselves out of bed, loaded up the car and started driving. Unlike the week before, traffic was horrible this time. It took nearly three hours to get there. We got to lab a little late, but got the tests ran. Dylan is such a trooper. He never complains. He never fights it. He is the true definition of brave. Its crazy I am so proud of him during these times, but so sad at the same time. He shouldn't have to be this brave, no child should. Our appointment was at 11 am. After getting some much needed coffee we made our way over unsure just what we were going to be told. Dylan's labs were still elevated. They were no worse than the day before, but no better either. Dr. Hurwitz made the decision to send us home. Dylan's labs were bad but she couldn't see putting Dylan under anesthesia for the numbers he had. So we were told to wait another week. Dylan will go back in on Monday for more labs. Before we left we signed consent forms for a liver biopsy. If Dylan's labs are elevated then he will have a liver biopsy done on Wednesday. I am hoping and praying that all his numbers look better with the next set of labs. I guess all we can do is wait and see.
****Today is National Biliary Atresia Awareness Day. One day out of the year that we (liver families) try to spread the word about this horrible, not well known, disease. BA is the number one cause of pediatric liver transplantation. Any baby with pale stools of prolonged (longer than 2 weeks) need to have lab work done. It is all about early detection. The earlier the Kasai procedure is performed the better the chance of success.****