Just when we thought that we had a plan to return to Texas, Aiden’s liver numbers have spiked and the past several days he has also been experiencing some internal bleeding from his digestive/intestinal tract, so we are now trying to figure out what is going on.
Late last week, the medical team here came to the decision that (since they cannot identify the cause/source of Aiden’s pain) they would focus for now on trying to identify a more effective and viable long-term method to control the pain, and thereby (hopefully) control some of the symptoms that he is experiencing. Because he cannot stay on the narcotics long-term, they are attempting to replicate his response to the opioids by using other pain medications that are often used in patients experiencing IBS and other diseases that cause severe abdominal pain.
This will be an extended trial & error process, and so we had worked out a detailed plan to return to Texas and continue this process overseen by Aiden’s physicians in Dallas, while the CHB team would continue to provide direction and advise long-distance until our next visit.
As part of this process we had expected to begin weaning the current pain meds last week and begin the transition to the other drugs; however, due to the liver & bleeding issues that have come up, they have held the wean anticipating the possibility of additional testing and the need to continue to protect his lungs so that he is able to handle anesthesia.
Last Wednesday, we met with a hepatologist to follow up on the increased liver numbers. She ordered some additional tests to rule out some concerns and follow-up on possible causes. Based on the results, it appears Aiden’s liver numbers continue to rise and they think he may need a liver biopsy to figure out what is going on. We will meet with his primary care physicians over the next couple of days to determine next steps. Thanks for your continued prayers!
It has been a rough month for everyone. Manish has pretty much been a single parent all month juggling the boys, a job and the household. To top it off, he was sick toward the end of the month with a G.I. bug that has been spreading across Dallas.
Hopefully, May will be more peaceful!
Below is a short video of Aiden walking in circles praying about getting back to the airport, going home and getting a good night sleep.