Below is a message from my sister with the most recent information about Jack. Please keep all of them in your thoughts and prayers and send positive thoughts to them.
Dear Family,I am sure you all have heard about Jack's recent health issues and have seen the "sock hands." I just wanted to give you all an update on what we have learned. Jack has been diagnosed with a very rare liver disease called Progressive Familial Intrahepatic Choleostasis (PFIC for short). It is genetic and our next kids run the chance of getting it as well. We don't understand much about it ourselves, but basically his body cannot handle the bilirubin in his system and he reacts with debilitating itching--thus the socks.
He has been on medication since late July for it (which interestingly comes from Bear bile acid). However, he has not responded to it. The specialists have now referred us to a surgeon. The procedure that he will do is also rare since it is for these specific patients. We have had a hard time finding someone qualified to do it with any sort of experience, who is also covered by our insurance. We do have a surgery date for October 28. He will have to be hospitalized for five days and will have a bag attached to his side for the rest of his life. The bag is called a biliary diversion and will collect the excess bilirubin from his system. We are supposed to be meeting with a "stomatherapist" to explain the bag, how it works, how to change it, pitfalls, etc... The main concern of the surgeon, however, is that the surgery will not work and he will still itch. If this is the case, we have to consider a liver transplant. Hopefully this will work...
In the meantime, Jack does not sleep or eat or play like a regular 17 month old. It has been nothing short of hell for us. Russ has not been able to work since he stays home with Jack to make sure he does not rip his skin off. We have been able to get through this through the help of our friends and family. Grandma and Grandpa Lehman take him at night on the weekends so we can get a little rest. Jen & Troy, Sarah & Paul, and lots of other great cousins, aunts & uncles, have helped with visits, dinners, and a great monitor system :). Friends have sent us meals, work has helped financially, and the community has him in their thoughts and prayers. We have realized through this all that we are so very blessed! This situation really could be so much worse. Jack will be ok. He will have his own sort of "normal" life hopefully very soon. He will always be fortunate to have caring and supportive family around to help him through the battles yet to come. We are learning how to cope with this in a positive way, but we (I) still have breakdowns and lots of tears.
I just wanted you all to know the story--not for sympathy or a pity party, but maybe a plea for some positive thoughts/prayers for Jack. We are trying to stay strong for him, but sometimes "it takes a village." Also, its often hard for me to talk about this, so I am guilty of avoiding those situations. Because of that, you may not know what's going on. Sorry! I know we all have our own battles and I hope that you get the same sort of support we have seen so far. If you have any questions, feel free to email me or Russ (nicki_lehman@hotmail.com or russhelsel@hotmail.com) or my sisters or parents. They should have the most up-to-date information. Thanks and I hope to see you all soon or at least hear from you! Take care. ~ Love Nicki, Russ, & Jack
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