Elijah has pneumotosis intestinalis (sounds like a new species!) in which there is air along the lining of the colon. This is not a normal finding and certainly not typical of post transplant complications. He has been in pain, had bloody stools and a distended abdomen and so he went into to clinic today for testing and to get a treatment plan. The doctor decided the first step was to give his gut a rest. That means he is back on TPN feedings (all of his nutrition will drip through his central line 24 hours a day.) His gut needs time to heal. Most likely an intestinal infection is the cause of his condition, but because this is not something seen often, they are not sure.
So, it isn't a perforated intestine (wonderful!). I was worried that he could be developing a life threatening infection in his peritoneum. It appears to be something less life threatening. It is serious. But, it is treatable. His white blood counts and ANC are still low, so there are lots of reasons to keep Elijah's condition in our prayers. He is fearfully and wonderfully and uniquely made...that is reason enough!
Our sweet boy has handled the pain and discomfort so bravely. It breaks my heart to see him have a look of fear on his face. He woke up afraid this morning..not sure how to handle the pain. But, after we stopped all of his feedings and helped him through the retchiness, he seemed to be feeling better. He was clear in stating that he was NOT all better when asked at the clinic. I was so proud of him...because he usually does not have very good self advocacy skills (and usually makes me look like an overreactive mother!)
And I have finally become very comfortable in the role as overprotective mother. Confident that God is in control of all things, I have learned to trust the guidance that he gives me through what we call "motherly instinct." It's God given and it is trustworthy when we seek Him to direct us. He has not let me down. If his line had not come out, he would have not had an xray. If he had not had an xray, we would not have seen the air in his colon. The gift of a failing central line was evident...and we are thankful.
So, day 100 is almost here. I am glad that we have not depended on the numbers, the statistics and the "typical" course of treatment to determine our source of hope. I am thankful that our trust is not in doctors, or "odds." Our trust is simply placed in God and his sovereignty over all things.
So, life is at a stand still. No plans to move home. Not much time or energy to do anything else or even think of anything else except Elijah's complex care schedule. God has been so gracious to us by allowing us margins in our life....margins that have made it possible for life to stand still for a time. I can tell you that there are sure to be things that we have forgotten along the way, bills that are late, forms that didn't get filled in, but we are able to prioritize that which is most important right now...and that is the precious life of our sweet son, Elijah.
