Today was a long day.
This morning Jace had his 1st establish visit with his new GI doc. We decided to have him see the same GI doc that Eli sees for ease of purpose and he's a damn good doctor! We discussed Jace's GERD and CVS, and he believes that Jace most definitely has IBS as well. Which really isn't a shocker at all. He wants to continue with the same meds as they seem to be working pretty well. He wants deeper monitor on the GERD episodes and this will help him determine when he wants the next scopes and biopsies. Will recheck in 1 month.
This afternoon my little man had his appt with Hemoc. They had set this up for approximately 1 month after ending blood thinners. It was supposed to be an open and shut case appt with basic lab work. Not so. They discussed multiple things, including the confirmed Mito. In light of how fragile Eli's body system is he is completely changing his plans. When we get our next line he wants 1/2 strength blood thinners. He's also running a special test to check the probability of having another blood clot in the next year. If this comes back above 15% we are back on blood thinners. Lastly if Eli has 1 single blood clot then he's on blood thinners guaranteed for life. He will continue to follow Eli closely and wants us to make sure that ALL docs talk with him when there is any discussion on a new line. We weren't expecting this at all. He ran a TON of lab work. They needed more blood than Eli's body will allow, so we hit his body max at 20ml. It took over an hr, 2 sticks, and 4 nurses to get all of it. He's beyond exhausted and pretty dehydrated from the sweating, shaking, crying and blood loss. Hoping for a quiet evening at home to let him rest a bit.
More coming this week, but for now that's all. i'm exhausted.