Feeling discouraged, to say the least. Brady has not been feeling well and he woke up with a fever today. I did not want to take him home until I was confident that was doing ok. So I brought him to the clinic where we spend 9 hours today!! His fever was very low grade, but they gave him an antibiotic just incase. After a chest X-ray, Echo, and Ultrasound, they found some fluid outside of his lung like there was before. Thankfully the window they placed in the sac around his heart was working. The fluid went through the pericardial into the lung cavity, which is what it was designed to do. There was not a lot, but since this is the same problem that led to his respiratory failure in August, his doctor was concerned. The medication that corrected the inflammation before was steroids. For the past few weeks he has been weaning off the steroids, and he has been totally off of them for a week. The fluid showing up again tells us that he is not ready to be off of the steroids. The inflammation is a form of Graph vs Host Disease. Which means his body is not accepting the new bone marrow the way they would like. So the plan is to start him on a higher dose of steroids for a couple weeks, then wean slowly until we reach the lowest dose that keeps him from producing excess fluid. Once we have him on a low dose that does the trick, he will stay on that for many months until the doctors think his body is ready to accept the marrow properly. He was also weaning off if his Cyclosporine, which is his immune suppressant, however now, he will continue taking that for a while as well. Both of these meds will hopefully keep him from over-reacting and allow his body to accept the new cells. It is all such a balancing act! I feel confident that his doctor is on top of this and that he is making the right decision. This explains why he wasnt feeling well this week. I had a bad feeling that this was why he was sick. As for our drive home, its postponed for now. They want to repeat Bradys chest X-ray on Tuesday. They told us this would set us back and delay us leaving but did not give me any kind of a timeline as to how long. I have a feeling that we will be here another couple weeks minimum. Charlee on the other hand, is doing well. She had a fun day making up games and activities with aunt Jessi! Her appointment went smoothly. She has the green light to go home. So now I have to decide what is the best thing for her to do in the upcoming weeks. This morning I had plans to pack up the trailer that was already attached to my jeep; with boxes that are already packed and stacked up in my apartment. Tonight we returned the trailer with no timeline of when we can leave. I feel Gods grace on us everyday. Just the fact that we didnt leave Memphis with Brady while he is sick is confirmation that God is in control and His ways are higher than our ways. Doesnt mean I always like his ways in the moment, but I do trust them.
Posted on: Fri, 17 Oct 2014 03:52:42 +0000
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