Today I heard the words, "Elijah is not following the typical course of recovery following a bone marrow transplant." I am not sure why those words caught me off guard, but they did. My heart sank and I have been fighting fear all day.
Elijah's adenovirus counts have swung up and down without a pattern that has been unpredictable. His other blood counts have not risen as expected. His kidney function is up and down with no clear trend downward. And, an xray today showed something that is difficult to explain.
A quick x-ray to see the position of the central line became more complicated. It was clear the line needs to be replaced. But, the radiologist called our transplant Doctor because of what else he saw on the xray. Elijah has air that is showing up around his small intestine and colon. This is typically an emergency situation because it is indicative of perforations or other significant health issues. But, Elijah, is showing few signs of a serious situation. But, that is the case with Elijah...what is going on inside of his body rarely matches with how he appears on the outside.
Last week, he had symptoms that were concerning to me...a distended abdomen, diarrhea, and fatigue. It has remained a struggle to try and figure out the source of any of Elijah's symptoms becuase of his complicated multi-system disorder. The nurse practitioner covering the clinic last week was not concerned with the symptoms...In an effort to be positive, it seems like she doesn't really listen to concerns. It is frustrating to share concerns with a provider that doesn't seem to want to hear them. But, I would think that if he had a very serious complication that was brewing last week, that Elijah's symptoms would have already escalated.
Thankfully, our transplant doctor was back in the clinic this week. Elijah no longer has a distended abdomen. He does have fatigue and diarrhea. Our doctor listens. She is thinking of Elijah and his case well beyond the 20 minutes she spends with us in the clinic. I respect her knowledge and appreciate her willingness to call in other specialists to provide Elijah with the best possible care.
And so, nothing much changes with these new findings. We still do just what we have been doing all along...we continue to be hypervigilant in caring for Elijah. He will be carefully monitered in the clinic. We will watch for any changes in his condition and we will pray. Just as we have done since the day that we meet our little boy.
Please join me in praying for Elijah...maybe I am just over reacting to the words I heard today. These unexpected complications are only unexpected to us...not to God who holds the past, the present and the future. Elijah has never followed a typical course in his life. But God has led us down this path with full assurance that He is in control of all things. And we will rest in His faithful promises..
For I know the plans I have for you, declares the LORD, plans for peace and not for evil, to give you a future and a hope. Jeremiah 29:11
