Jacob's Story, Part 4

November 14, per the recommendations of our doctors here, and the team in Boston, Jacob had another MRI, this time of his chest, spine, abdomen, and pelvis.  Backing up a bit, MRI's on one so young are not benign.  He has to be put under general anesthesia for each one to ensure he doesn't move at all during the scan, and thus is intubated and paralyzed for the duration.  This is why we try not to scan more than is absolutely necessary. This particular MRI covered a much larger area than usual, and thus he was under anesthesia for quite a while. He did well though, and afterward our IR talked to us.  The lesion in his chest is only slightly bigger than it was last January. His ribs though were widened where the lesion is pushing on them. On his back it is much bigger. It has either fractured into segments, or new lesions have grown, causing it now to resemble a large cluster of grapes.  Much more complicated to treat, as now instead of injecting one lesion, there are multiple. All agreed we would await treatment until we went to Boston. The good news is no lesions were seen in Jacob's GI tract...this is not definitive, as the only way to know for sure is to scope, but a pretty good indication that if there were any, they aren't big enough to cause problems right now.  So we sent the MRI to Boston for them to review as well. In early December, they got back to us and scheduled our visit. We fly to Boston February 6th, and have an appointment at the Vascular Anomalies Center on the 7th, where we will see a battery of doctors, up to 15 different doctors of varying specialties.  We then have a break over the weekend, until our GI appointment on Monday.  Wednesday is procedure day, as Jacob will be put under for sclerotherapy on his back, as well as surgical removal of one of his skin lesions. He has a day of recovery, and we come home on the 14th.  Each person we have had contact with in Boston has been so helpful in all aspects of our trip.  We are so grateful to them.  We are still waiting on our final insurance approval of our request to go out of network, which has been quite the process, but without it, we would have to pay out of pocket for all his care in Boston which is impossible.  So needless to say, this insurance approval is a major source of stress. Please be in prayer with us that these final details will fall into place as we are now only 5 days from leaving. Thank you for following our journey and for your support of our family, and our sweet Jake.