So, we visited with our gastroenterologist (who is terrific, by the way) and we were given the diagnosis of Crohn's disease for Harrison. I was quite shocked, as the biopsies that he had seen earlier were not showing Crohn's. We also found out that he is very anemic and that before we can continue with treatment, we have to get the iron up. We can try to do it at home, but if we are unable to get the iron up, we will have to go to the hospital to do that. It may be challenging to do it at home as he is still losing blood.
Harrison will go for a TB test tomorrow afternoon to make sure he does not have TB. If we started him on immuno-suppressant drugs and he had TB, it could prove fatal. Then we will go later in the week for another blood workup to make sure his liver and kidneys can handle the new drug we'll be trying. As early as Wednesday we can start taking prednisone to heal his ulcers. This should aid in stopping the bleeding. He'll be on a pretty high dose to start, and then we can taper him off. He may be on the steroids for a few months, since this episode is particularly bad. After the blood work comes back, the Dr. will give us a fairly hefty dose of an immuno-suppressant drug and try to put Harrison into remission. I'm told that once he's been in remission for several months, we can try to back down that drug, but he will take an immuno-suppressant drug the rest of his life.
Those are the facts. Crohn's Disease. A chronic disease. Lots of medicine. Some analyzing diet & changing that where we can. Anemia.
Now for my feelings. I am scared. More scared of the drugs than of the disease itself. Scared of the impact this will have on my precious child. His growth is not stunted at this point, but most children with this disease are mal-nourished. I want to scream and run. And, yes, I do realize it could have been worse. If I have to hear that one more time I may go nuts! I do realize that it could have been worse. But, if your child is diagnosed with a chronic, serious disease - the last thing that you want to hear is "it could have been worse."
That being said, I do see God in this. I know that to see our Dr., you must be referred, and only the most serious cases get accepted - and then you may get an appt. for sometime in about 3 -6 months. Matt and I prayed and were given an appointment in 30 minutes. While Dr. Donovan did not seem to think Harrison was that ill (because he doesn't look or act sick) he took the time to listen to us and hear our concerns. He kept assuring us he would find nothing during the testing, but felt like because of the symptoms he had to proceed with the testing. He was as shocked as we were in finding he had Crohn's, but he spent an entire hour with us making sure we understood his beginning treatment plan & what our short term goals were. He told us that it is unheard of to have a diagnosis this quickly & that his growth is normal due to the quickness of testing and diagnosis (another God intervention I believe). His hope is that he'll continue with normal growth and nutrition in about a year.
While I'm fearful for my Harrison & I'd gladly take this suffering from him in a second, I know that God is working here - all things work together for His glory. I know that He is the Father of all fathers, the Parent of all parents, and that comforts me. I'm glad that he is allowing me to mother these 3 boys, but I know they are His children. I will do everything I can on earth to protect them, take care of them & love them, but I do rest easy knowing that God answers prayers & is right with us during these trying times.
