GI Appointment

Last week, Stevan and I headed to OKC to visit with Dr Hong, the GI doctor that we have been trying to get in to see since September. Apparently, the front office didn't thinking Stevan getting in to see the doctor was very important, that's why they kept canceling and rescheduling his appointment.
This is why it is very important to make sure you let your referring doctor's office schedule your appointment and when they keep rescheduling, let your referring doctor and nurse know about it. We love Dr Selby's nurse, Kylie. It seems like I can call her with just about anything related to Stevan and she can get me an answer within 24 hours.


So now onto what we learned at the appointment. Dr Hong went through all of the possibilities that could be causing Stevan's diarrhea all of this time. He ruled out a parasite since he's been tested multiple times. He thought that maybe Stevan's adrenal gland was still not functioning right, even with the hydrocortisone dose. He wanted me to contact Dr Hummer, Stevan's Endocrinologist, and see if she would order tests to see.


I have since spoke with Dr Hummer and she said it wouldn't be as easy as ordering a test since Stevans now taking Dexamethasone. She explained that it stays in his system longer than the Hydrocortisone, so we cant take him off of it to test him. She believes that his Hydrocortisone dose is good and this adrenal issues is not the source of the problem.


Dr Hong wanted to test for gluten intolerance or celiac disease, which just required a blood test. He also thinks there is a possibility that its irritable bowel syndrome, which really means anything could be wrong. It seems that if they cant figure out what is wrong they call it IBS. Finally Dr Hong thinks Stevan's problems could be from being radiated on his lower back in the fall of 2011 or possibly cancer of the bowels or colon (prayers that this is not the reason).


To rule out each of these, Stevan got the blood test that day for celiac disease. He now has an appointment for a colonoscopy for Feb 27th to rule out colon cancer and any other problems with his bowels. They are also going to look at his hemorrhoids and see if they need to be clipped.


I believe that Stevan originally had diarrhea due to his adrenal gland issues, but now has it from the radiation to his gut for his lower back. But then again, I'm not a doctor. I do hope we finally get some answers with in the next month and we get it resolved.


In a couple of weeks Stevan will get an MRI and body x-rays to make sure that everything is ok. Thank you for the prayers and for following our journey.

Progress

Of the new year, I'm back at work, managing classes, making lesson plans, grading papers/quizzes/tests, and covering classes for other teachers who are absent during my conference time on some days. On the days I get to have a planning period, I'm still tracking down appointments for Stevan, as well as medicine orders, testing dates and calling/talking to people about programs for financial help and getting details on qualifications for foundations that can help financially on Stevan's medicines and medical procedures.

Earlier this past week, while I was paying Stevan's Revlimid copayment from December, I got to speaking to the woman and she suggested four foundations that I was not aware of. She told me they may be able to help us with our copayment for his Revlimid. Yeah! We can always use some help when it comes to paying medical bills. Then on Friday when I was ordering his new Revlimid script from the mail order company, we discovered that his copayment copayment has gone up from $60 to $100 a month. (And I had thought $60 was high!) yep we will be looking into getting some help from one of the foundations that I was told about. 

While I'm thinking about I also discovered this past week that I miss heard the doctor when he was telling us about Stevan's Revlimid. I thought he was reducing it from 25mg to 10 mg... I was wrong. He's leaving it at 25mg for 21 days then off 7 days. That's still better than what he was doing, 25 mg everyday. This will give his body a little bit of a rest.

The best news of the week is we finally got an appt with Dr Hong, the GI doctor! This Wednesday we will be seeing him! I got to speak with his nurse who apologied for us getting the run around from their front office. They are going to look at Stevan's upper and lower scope that he had done back in Nov of 2011.  Hopefully they will find out what has been causing Stevan so much problems over the past 4-5 years. Yes, he was having problems even before his gut was radiated back in Nov of 2011. 

So we have a lot happening this week. We would appreciate prayers of safe travel this week as we go to the city and that all goes well at the doctors office. Also for time management so that I can get all that I need to get done this week at school and at home.