Thursday, August 13, 2009


I have finally found a calm place in my mind again. I am preparing my heart and soul for the future. I am not always going to hear what I want. These past couple days have bit a stressful. Gary did not pass his swallow test. The NG tube stays. I was able to buy Gary 2 weeks. In 2 weeks if he does not improve with his swallowing, the situation will be reaccessed. We came home from the hospital at 1am (since we went past midnight it was Wednesday) but really Tuesday night. The intern doctor came to talk to me about going home. The look on her face wasn't good. I thought she was about to tell me they wanted us to stay. For whatever reason, Gary did not tolerate the IVIG this time. Every time we turned it up his blood pressure went up. Not sure if I put that in my last blog. Anyway, I thought for sure she was going to say stay but she didn't. She felt comfortable sending us home with the understanding that I take him to his pediatrician for a blood pressure check. She discussed with me that the swallow study report had not come in yet. She called me at home the next morning. We talked about his blood pressure and how it would be ok to have it taken Friday. Then she went on to talk about the swallow study results. "At this point we are recommending G tube placement," says the doctor who knows not! She told me that it had been discussed with the team and if I would like to schedule the surgery there at the hospital then they would be more than happy to set that up with his over night stay. Going into details as such. Right. For those of you that are not familiar with the different between and NG and G tube, I will tell you. NG is what Gary has now. A tube goes in his nose, down the back of his throat, right into his stomach. A G tube is a piercing or puncture threw the skin into the stomach. It allows patients to eat by mouth more. The NG tube seems to be interfering with his swallowing somewhat. How much, we don't know. Right away I said "ok". Simply ok. I knew. I knew it was all crazy talk. I called the nurse I always talk with right away. Here is my message, "Yes, this is Erika Bradford, Gary Bradfords mother. I need for Ruthie to call me right away. I need for Dr. E to know that interns are calling my house trying to schedule a G tube placement. Please call as soon as possible." It took awhile but they called me back after about an hour and half. The information was what I thought. They said NO WAY. Not true. That is not happening. Thanks for getting me all uppity people! Unfortunately she had other things to discuss with me. She explained that Gary's levels went up again. That was up again from last week. Ruthie told me that Dr. E would be calling me because they needed some time to figure this all out as far as where to go with treatment. Later that evening I got the call from my favorite Dr. E. She explained she was a bit confused on why his levels are climbing back up. She asked me what I thought about placing a G tube. I told her I think he needs more time. Time to improve on his own. The thing I don't like about that is he has seemed to back off of his improvements. He has come so far, recovering great. But it has seem to stall. I have no further improvements I can note. Still not stepping up or down stairs, and has exsisting tenderness in his knee and hips. I am confused on why she is confused about his levels going up for the second time. They have decreased his steroid for the third time now. Results: his levels went up. Hello? It is hard being a mother without the medical knowledge. I know there is an explaination why this isn't completely connected. She said his levels may have gone up because we skipped our Friday infusion for the concert and didn't come in till Monday. But his levels were up last week too and it had only been 7 days. I explained to her that I don't think it necessary to remind everyone that this disease came to the front door. We bolted the door. It can easily be running around us to go thru the back door. So we are going to wait. We go in on Monday again for our regular infusion of cytoxin and methotrexate and most likely steroid pulse. If in two weeks is levels have not turned around the other way and his swallowing has not improved, then there is talk of adding a new medication. We will revisit the who G tube thing again in two weeks has well. (Between you and me, I am going to fight that one all the way).

We have all been already a little sore over the approaching one year anniversary of loosing Grandpa Bradford. :(


  1. I hate to hear your news. I am with you on lowering the steroids and then saying why did the levels go up? That is kind of a no brainer! Everytime we lower Kya's steroids her levels go up at least for the first week. We ran into this stall in improvement and levels up and decreasing steroids around March and that was when we saw Dr. P. That is when our doctor said I don't get it. I want to lower steroids but her levels go up and that is when Dr. P told her to add Cellcept. We call it the wonder drug. That was really a huge turning point for us. All she did was decrease the steroid and add cellcept and the results were really amazing.

    I pray that all goes well for Gary and that they figure out the right combination for him. We are praying for you guys every day! Hang in there Mama Tiger!

  2. That is so good to know! Thank you Kalee. Our doctor mentioned adding cellcept in 2 weeks. She called it MMF. I immediately went to the Bible of JDM (Myositis and You) to look it up. Cellcept! Ok good yes, I feel better.