Not even sure where to begin. This admission has seemed so crazy to me. We let Alex sleep until anesthesia called for himthis morning at 8. Once again there was the start of a meltdown. However, by now I knew that Alex's ammonia was high. Despite lowering the protein in his TPN and starting IV arginine his ammonia was still double what it should have been this morning. I tried to reason with and comfort Alex, but he is panicked about anesthesia. One of our favorite nurses is in our pod and was sad about how upset he was. She called the anesthesiologist (who we love) and she came up to the room to give him something so he wouldn't be so scared. We headed to the MRI suite and I stayed with Alex until he was asleep and they were ready to intubate. I left about 9:00 and they told me he would be in the scanner about 9:30. They expected the MRV to take between 2.5 and 4 hours. I got two updates during the MRI. Around 12:30 they called me to head to the surgery waiting area, because they were getting ready to extubate. I was back with my boy about 1:00. He is still sound asleep. So far he is doing well. He looked like he might have been starting to seize at the very beginning of the procedure so they gave him ativan. We are hoping he can keep his temp down.
While Alex was down in MRI, I saw GI. They did not like that he got so distended last night after attempting 2 cc's of meds so they told me to not give any more meds through his tube. It also caused his lipase to double again. They anticipate us going home on TPN and IV meds and working slowly on feeds at home.
When we got back to the room our team was here and already had preliminary results. It does not look like there is a new clot. They can still see a fibrin sheath where his old clot was. We are waiting to hear from hematology whether anything else needs to be done. We are slowly resolving all the issues. It looks like as soon as Alex can come off pain meds, we can head home.
If anything cahnges tonight I wil update again.