My son was diagnosed with a rare liver disease last year. He became very ill over one weekend and in a phone call from a doctor we learned we were close to losing him. It took several doctors (finally after one (long) month) , many blood draws, test after test with negative results, ultrasound, mri, referral to a Gastroenterologist, and a liver biopsy to finally have a diagnosis.
The treatment? We needed to shut his immune system off so that it would stop attacking his liver and give his liver a chance to heal itself. That required high dosages of medicine and a locked door to the outside world for a little while.
Over the course of this past year, he has had his blood drawn every two weeks. Every two weeks we (anxiously) waited to hear the results that his liver enzyme numbers slowly lowered but never reached normal.
It was a rocky year. This medication was saving his life, but not without difficult side effects. Extreme weight gain, swollen face, extreme acne and severe anger outbursts. It helped to lower his numbers, but never to the normal range. Then within the last few months, as they -s l o w l y- lowered the dosage of one med, his numbers started to climb again and his medication dosage climbed back up with it. We were stressed and worried as we no longer wanted him on that particular medication. The doc didn't know why his numbers were climbing again and we found out later that he wasn't making the right choices in the medication dosages.
I received a phone call from his specialist and was told that he was leaving the state and that we would have to find a new Gastro G.I. I have to say that at first I was SO WORRIED! To have someone step into my son's treatment midway... there are not alot of options for Pediatric G.I.'s here. After a moment of hearing the news I was calmed. God instantly comforted me and let me know that this was HIS plan.
My son was not in the right hands. I received some suggestions for new specialists and also received red flags on those... then one referral came in. A Specialist at Seattle Children's Hospital. Yes, a 6 hour drive away. But I knew that is where we were supposed to go. God indeed let's you know....
We made the drive, met the new Doctor and she saw right away that his dosages were not right, in fact dangerously wrong. After running her own blood tests, some the other doc never ran, the Doctor made some dosage changes and within ONE WEEK, my son's numbers were all normal. In the whole last year we never reached normal levels. Normal levels mean that his liver is not under attack. In one week's time, our new Doctor had it all right. Praise GOD! I can't imagine where we would be today had the other Doctor never left, it makes my stomach sick to think about it. He was a Specialist and I trusted him.
Today, almost 3 months since our visit, his numbers are all still in the normal range which means his liver is healthy and functioning normally. We have started to wean him off the other "now dangerous" medication that he has been on too long. This will be a lifelong battle for him. He will be on medication for the rest of his life.
My son, Josh. He is my hero. He has endured so much over this past year and has never once complained.
We spent the rest of our time exploring Seattle. What a cool city! We look forward to the Doctor visit's as each one will be an adventure.
The Space Needle, amazing!
My red head :)
Josh loves photography, and I LOVE that.
Uh oh... watch out Edward... Jacob may come across this!
My darling Emma