| My pregnancy with Joshua was what one would consider normal: The first three months I spent totally nauseated, but was able to really enjoy the pregnancy after that. It was 6 a.m. on November 8, 1996 when labor was induced and Joshua was born some grueling 15 hours later. I suppose he figured he was 11 days late at that point and didn�t understand why we were rushing him! He wasn�t a very large baby (7 lbs 6 oz). From the start, his temperature ran a little high (99.8 degrees) and his breathing was a bit labored. The doctors were keeping an eye on him because the meconium (baby�s first bowel movement) had been prematurely released and could have triggered a related pneumonia. Around 1 a.m. Joshua began to show signs of distress. He became fussy and started rejecting his feedings. Joshua continued to cry through the night giving way to little or no sleep. Still, the following day the acting pediatrician gave Joshua a clean bill of health and told us we could bring him home. We questioned about his sudden change of demeanor, his ongoing temperature, and his labored breathing. She assured us that none of those things were unusual and it would take him and us a couple of days to adjust to one another. At home, Joshua continued to cry relentlessly with a few |
| Joshua Van Mechelen |
| Contact Person: Sharon Van Mechelen Email: [email protected] Birthday: November 8, 1996 Hometown: Portland, Oregon Age of Diagnosis: 3 days old Other Diagnoses: Acid reflux, Liver Transplant Meds: Prograf (anti-rejection) Acyclovir (anti-viral) Ursodiol (Liver med) Omeprazole(acid reflux) Vitamins w/fluoride Formula: Night drip for supplementation- Peptamin Jr. 250cc Developmental status: Approximately 2 years behind in motor skills more so for speech |
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| winks in between sessions of more crying. We made our first call to the pediatrician around 9 pm that evening. The advice nurse reassured us Joshua�s behavior was natural for a newborn and that we should try giving him formula to see if he preferred it to breast milk: He did. He immediately responded by falling asleep for a couple hours. When he awoke he began to cry, but seemed very lethargic. �He�s probably just exhausted,� the nurse said, �It is not uncommon for a newborn to want to sleep for long periods of time�. She instructed us to let him do just that. When I tried to wake him to eat several hours later, Joshua felt feverish so I took his temperature. It was 100.4 degrees. I made another call to the advice nurse on duty who told us to take his temperature rectally and to call back only if it was over 100 degrees. It was 99.4 degrees. We didn�t call back right away, but we did contact her a couple more times later that night. She was convinced, however, and had us convinced that there was nothing to panic about (which I suppose it seemed to her like we were). Yet the nurse did agree that if Joshua did not improve by the time the office opened that we should probably have him examined. Eight o�clock could not have come soon enough. By this point Joshua had stopped crying, his breathing seemed more labored, and he had a glazed look in his eyes. When we called our pediatrician�s office to let them know we were coming in, I again expressed my concerns. �Should we just take him into emergency?� I asked. �No,� she stated, �They probably have a long wait. It would be quicker if you just brought him into our office.� By the time the doctor saw Joshua, though he was awake, he was not responding to any stimulation and his chest caved in with every breath he took. The doctor immediately made arrangements for us to take him to Emmanuel Children�s Hospital in Portland. He wasn�t positive about the reason for Joshua�s condition but his guess was that Joshua had contracted the pneumonia they were watching for earlier.
Once we arrived at Emmanuel a team of doctors and nurses whisked him off to a back room where they started poking and prodding my little baby with needles. Joshua didn�t even whimper. Moments later one of the nurses came over to tell us they were going to transfer Joshua to intensive care because his condition was much worse than they had originally suspected. Three hours later we were told that Joshua had ammonia level of 600 due to a Urea Cycle Disorder. We were also told he was fortunate because the doctor on duty that night had recently aided in diagnosis of a Urea Cycle Disorder and had known to check Joshua�s ammonia level. It had risen very rapidly; by the time they put him on an IV and dialysis his ammonia level was 900! The next hours were spent with family and friends praying for Joshua. Praying over Joshua. The hours turned into days and Joshua grew stronger. His frail little body became plumped and his skin became rosy. How I cried when he actually looked at me and I saw recognition in his eyes. We�ve gone through all the challenges this disorder poses. At 2 years old Joshua was given a g-tube to help with his failure to thrive. Then a year later he had his first seizure and was diagnosed with epilepsy. Being placed on seizure medications seemed to play a role in his constantly high ammonia levels and enzyme counts. Though many of his doctors were convinced that the high levels were not a concern because Joshua seemed to be well clinically, I did not agree. After attending a NUCDF conference in Houston and a lot of research and prayer, I decided to have Joshua placed on the liver transplant list. This had to have been the most difficult decision of my life. I knew the risks but I also knew that my little boy�s condition was slowly deteriorating. He was always so pale and seemed to �check out� more and more. It took only 2 months of being on the list before Joshua received his new liver. It was to everyone�s surprise that his own liver was more than two times the size it should have been and deteriorated on a cellular level. His recovery wasn�t easy. He spent more time in the hospital than most and dealt with some rejection shortly after the operation. Though through everything he held himself together better than any of us. I just kept my eyes on God and the ultimate goal of what positive changes in having a transplant would offer him. I can say without doubt that almost instantly I noticed a �gate� that had been open for Joshua that would not have been in his former condition. Now more than 2 years post transplant, Joshua literally blows me away every day with the improvements he makes in his development and skills. His love of life is truly an inspiration to us all. |
| Joshua's Information as of May 2004 |
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