19 Apr Is it really just Monday?
I kinda wish I knew how to start this update. It was not the best of days today.
We started with the upper GI and small bowel follow-through. That was only after a very long, sleepless night by all four members of our family. But I digress. The test itself went fine. As we expected, we didn’t exactly learn much from the test itself. This test is usually used to look for obstructions and malrotations. We ran it in hopes that we would learn something about the transit time of Keegan’s intestines. However, since that’s not the overall purpose of the test, we really don’t have a standard to compare Keegan to that would give us a better understanding of what his body does. All we can do is ask the radiologist to compare what she saw to other children she and the department have run on other children. The test should generally take several hours. In fact, the latest time you can schedule the test is 9am due to the fact that it “could take all day to run”. Some of the barium we gave Keegan, however, reached his colon in less than an hour and half. To make matters more interesting, only about 30% or less of the contrast left his stomach. We vented the rest back out of his stomach through his g-tube at the end. Yet another Keegan anomaly.
When the test was pretty much over, the radiologist went out of her way to really discuss Keegan’s history with me. We talked about his past, what problems we were experiencing, and the unconventional reasons we were running this test. She didn’t have an extensive amount of experience with this particular test with which she could compare Keegan’s results, but she said she would make every attempt to consult with her colleagues about his results. I was pleasantly surprised but not holding out a lot of hope for that promise. We should have the official report and be able to discuss the results with our GI doctor by Wednesday.
The rest of the afternoon involved the onslaught of Keegan voiding the theoretically small amount of barium we pushed. At one point, both of us had to change clothes, and he had to take a bath to get clean. When I got everything and him cleaned up, I noticed that the dressing on his port needle was loose. We were going to just replace the dressing so that we didn’t have to stick him again. But once we got the tape off, we noticed that once again, there was quite a decent amount of blood and some other type of discharge surrounding the needle (not sure if it’s TPN or something else).
Right before his bedtime, we were able to get in touch with the transplant team. We reaccessed his port one more time so that we could run his TPN overnight. We are unsure why he is having these continued problems with his port. It could be trauma from his fall on Friday or a change in tubing that we have been dealing with or a combination of the two. At any rate, we will have to make an impromptu trip downtown to consult with his doctors about what’s happening. They said tonight that it is possible we will need to have a surgical consult and run a dye study of his line to rule out a bigger problem.
We will update again tomorrow. Still no word from the scheduler for his scopes, but maybe we can push that a little while we are at the hospital tomorrow. We will update again when we know more. Thank you, as always, for your support and prayers. We get through each day knowing Keegan is being lifted up in prayer.
Unfortunately, it is really just Monday, and this week is just going to get longer. But at least I can end with a few pictures of these cuties to brighten my night…and maybe yours too.
