updates on James and more
Jamey’s report card just came in the mail. He’s missed 109.5 days of school this year. That means there are less than 70.5 days left to get him back this year and that doesn’t look like its going to happen. It has been a year since this first started. Almost 365 solid days filled with pain for my boy. And no end in sight. I am frustrated beyond belief and the only reason I don’t throw in the towel is because my boy needs me to fight for him. I can’t give up on my son, nor can I let him give up. That is not an acceptable outcome.
The medication James was put on (Wellbutron) has caused a manic episode. My son has never been bipolar. Yet for the second time since being at Children’s, we’ve had issues with antidepressants causing issues like this. When he was taken off the first one, he threw his brother across the room. Thankfully this time we are dealing with a Dr who knows her medications and she has prescribed another medication to help stabilize his moods. So far he’s sleeping a lot better, but he hates how it makes him feel.
I do need to call neurology this week to get the refills for his one medication. I’m not sure if it’s a mess up on their end or on the pharmacies end, but they’ve never received the increase at my pharmacy. Considering the fact that I have YET to receive a call back from the patient advocate, Neurology, nor DRG concerning the calls I made in December, I’m not holding my breathe that it’s not a problem with in the Neurology department.
In one week, it will be a full year since we started dealing with Children’s and despite having a few diagnoses (Fatty Liver and Chronic Migraines), and a missing organ (we hope) We are no closer to any type of answer. He is still having a burning sensation in his stomach. He still gets flair ups of gall bladder like symptoms in his side, and the migraine is his constant companion.
In a year, he has gone to 2 practices where he could not participate, twice to friends houses for a little while, his cousins wedding where he was miserable, and maybe now and again to his cousins house to visit. I have spent my anniversary, my youngest son’s birthday, and way too much time all together at the hospital. He has gone to school 5 times. The birthday we had so hoped would finally be pain free he spent dizzy and light headed as the migraines were starting. He has been to one funeral (the day after his release from the hospital from his gall bladder surgery. )
Departments he has been involved in this year:
GI~ See a psychiatrist and call us in 6 months in early Nov
Neurology~ See a psychiatrist and call us in 6 months in Oct
Chronic Pain~ Dropped us 4-5 times, no longer involved with them and would not be even if they suggested again. There is nothing they can do for us.
Weight management~ I need to make an appointment
Medical Coping~ Both his therapist and psychiatrist He does seem to trust them. They have ADHD, Clinical Depression and a few other diagnosis on the paper work.
ENT~ Nothing more they can do, the imbalance problem isn’t something to worry about.
DRG~ Supposed to help us get the answers by organizing all the departments. Saw them in August once, they did give us 2 weeks of home bound for school but since then nada. I do feel ignored by the dept.
Eye care clinic~ Appointment next week. They were to be keeping a close watch on his eyes since the Pseudotumor diagnosis, but since Neurology went back on that diagnosis, I have no idea what will happen.