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.

Home Day +72

Yesterday was a day for us to relax and catch up on things. I want to follow up with what happened to lead Stevan to be released. Stevan felt so much better on Wednesday morning. He had not ran a fever since Monday night. He had not had his Vancomycine since Sunday night. Dr White had ran a bone scan and saw that the infection had been responding to the antibiotic and looked better than before. His Potassium was on the low side, so they gave him some per IV and in a couple of pills and then was able to have his picc line removed. They sent the end of it to the lab to check for bacteria or infection.

They have increased his hydrocortisone in the AM from 20mg to 60mg and the PM from 10mg to 30mg for the next three days and then go to 30mg in the AM and 15mg in the PM for the next 30days. He will have an appointment with an endocrinologist on Aug 24 to talk to us about his adrenal insufficiency and how to continue to treat it.

Dr Holter came to visit Stevan and examine him. She said that she wants to wait to do the transplant for at least a month or two. She said that his kidneys are on their way back to being normal, but he must hydrate himself well with water to clean them out and help them to heal.

Before we left the hospital, I asked for copies of the blood work since we were there on Monday. Last night I got to looking at them and to my surprise I found out something that some of my MM readers had commented on and told us to watch for. I had posted before that Stevan's M spike on June 20th was Monoclonal IGA Kappa #1 = .5 and #2 = .1. On last Friday's visit, July 27, his blood test showed his M-spike to be .2 with a small M-skike noted in beta/gamma region. So what does this mean? His M-spike is still dropping and he's not on any maintance therapy.

With all of this combined, we feel like this is an answer to prayers. We hope that in a couple of months maybe his M-spike will be at zero. Definately something to look forward to.

Finally Day +69

Right after I posted my last post we asked the nurse to call Stevan's doctors and see if we could find out what was going on since no one had been back to talk to us. She did and we got to talk to him over the phone.

Dr Lam said that the team of doctors looked at Stevan's bone scan and it actually showed that the infection looked better. So Dr White is a little reluctant to pull the rod out since it has responded to the Vancomycine. We will need to follow up with Dr White about his arm next week. Since his Vancomycine level is so high (he has enough in his system to last five more days) they have decided not to continue it.

So what was the whole problem? They believe a combination of high level of Vancomycine and not enough Hydrocortisone in his system. Back in April, Dr Holter prescribed him Hydrocortisone for him after she learned that he still had been having diarrhea (over a year), diagnosing him with an adrenal gland deficiency. The problem is that we were never told to follow up with a Endocrinologists to explain to us how to adjust his dose when he got sick. They have increased his dose of Hydrocortisone now, which is part of why he is feeling better.

They are going to watch him over night and in the morning. If his blood levels are good tomorrow and he doesn't run a temp tonight then he will be released to go home tomorrow. He is now getting ready to eat since he hasn't been able to all day thinking they were going to operate on him.
God has taken care of us once again. Thank you for the prayers. We can now focus on a possibility of a second transplant. We still have lots of questions for the transplant team over this.

Transplant - Day Zero

The magical bag. The red stuff is the stem cells

Now we start counting our days up from today, even though we have already been in the hospital 3 days. Transplant Day is considered to be day zero, his birthday as they call it.

This morning started earlier for Stevan than yesterday. I was able to get him up to eat and shower before the doctors made their rounds at 10am. Yeah, rough huh! Grace is our nurse again today and she gave him his pre-meds; Tylenol, Benadryl, and Hydrocortisone 30 minutes before the transplant. Within 5 minutes of receiving the Benadryl, he was out! He’s apparently very sensitive to it.

They had around 2.6 million cells in three bags. It took about 50 minutes to have all three thawed, verified and dripped through the line. I had been told that the preservative that the cells were in smelled like cream corn. It does. I actually couldn’t smell it at first, but an hour after transplant, I went to open the door to leave the room, I caught a whiff of the smell. It must be coming from Stevan’s pores in his skin. Even five hours later, the smell is even more potent in the room. I’m not sure I will be able to eat cream corn again.

Wearing his other "vacation" shirt, this is what
he's done most of the day.

Our pastor, Brother Mike showed up this afternoon. What a wonderful surprise! He couldn’t stay long, but it was nice to see a familiar face, a long way from home.

Anabel, from Physical Therapy, also came today to give him a list of exercises that he needs to do each day to keep his strength up. He didn’t look that interested in doing them. Matter of fact, this afternoon was the first time I had been able to get him up and out of the room to walk the hall in the unit, all of about 40 yards in length.

We are sitting tight, enjoying the lazy days and watching TV and movies all day… yeah hard time, I know. It’s just another day in the BMT Unit.

I have been working on fixing this site so that you can post comments on each blog. Not sure if I've got it fixed or not. I changed a few things, so let me know. Thanks Pat for pointing that out to me.