Todays been a long day, spent over 3 hours at the EE clinic its been an extremely long past 2 weeks and Im ready for a break, a vacation. Today we had our EE visit and they arent sure what the inflammation or rising ESR is from. The doctor is worried about how many endoscopies Jackson has had and that we have failed sooo many foods. They have decided to Lord willingly to keep his care strictly at the EE clinic, hopefully tricare approves because we only got 2 office visits this referral. They have decided to put him on the slurry full time to see if we can pass foods, and since he has had great scoping results to move onto a 2-4 food trial. Meaning that we start 1 food, for example jackson is wanting wheat so we started officially tonight and if he starts experiencing pain start slurry and dont stop, push through and than after a few weeks than add in another food, than scope and repeat. The biggest and hardest thing is his doctors dont think wheat will pass, and they know that jackson has been asking and asking for it, she also said if his scope were to show something they would pull everything, so the new treatment plan will help lower the endoscopies but could cause us to lose our foods. I went to fill his pulmicort for slurry tonight and the pharamasit wont fill it because it says you cant swallow it, and insurance denied it we are talking over $600 for 2 boxes. Im tired overwhelmed and drained, Im into my week 6 of classes with a butt load due. Not to mention the doctor cant get into seeing maddison until the 25th or 4th. Josh and I are continuing to pray and Praise the Lord, its hard and Im just sooo tired.
Posted on: Tue, 11 Nov 2014 05:19:54 +0000
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