12 Mar Update
Keegan had a very rough night between the blood, diuretics, “clean out” formula for the scopes, and two enemas. He tolerated the blood well and needed it for the scopes. They took a LOT of tissue to biopsy, and he bled for a bit afterward. The doctors didn’t see anything remarkable in his GI tract during the scopes, but we didn’t expect they would. What we are really curious and anxious about are the biopsies. The doctors will be preparing the tissue this weekend to evaluate under the electron microscope (no, for real this time!) and hopefully will learn something from looking at the cellular structure of Keegan’s intestinal tract. Those results should start coming back next week. Today, the doctors received the slides from Keegan’s previous scopes and liver biopsy to use as a comparison also.
The biggest news of the day though by far is that Keegan had ZERO rejection in his heart biopsy!!! YIPPEE!! That’s actually better than last September. The cardiologist still thinks he needs a few more days of diuretics to help his heart a bit. Some of the immunology labs are starting to come back too. The immunologist said that alot of those numbers are abnormal but unfortunately not in a way that indicates what’s wrong. They will continue to run some additional testing and said even if they don’t figure it out, they could continue researching it for months.
The other good news is that the next four days should be fairly quiet with no procedures scheduled until Monday. We will continue to work on increasing his feeds and resting up for surgery Monday to remove his infected port. Unfortunately, we have to start back over at the beginning since he hasn’t had any formula through his tube since Monday. We just can’t say thank you enough for lifting Keegan up in prayer the last few days. They have been hard on all of us. We’re so grateful for our wonderful family and friends who have been so generous on our journey. We’ll update again tomorrow. Looking forward to a slower night tonight!