05.05.2008 - More Complications

From Julian's COTA Journal.

Stacy's sore throat doesn't seem to be getting worse at present, and she still doesn't have a fever. Hopefully, whatever this is will soon pass, and we can resume our "normal" routine, although it's been a while since anything we did felt anything close to normal. Our plan at present is that if she's feeling better tomorrow morning, I'll fly back to Colorado tomorrow afternoon to work the rest of the week, and rejoin her and Julian this weekend. Stay tuned.

During dialysis today, the new transplant coordinator stopped in to "ask a few questions." It seems as if there are still a handful of tests that need to be run before Julian's formal evaluation can be considered complete. These include a chest x-ray, and ECG/EKG, and an MRA (?). We took care of the chest x-ray this morning after dialysis, and tomorrow a.m. Julian goes in for the ECG/EKG. It's unclear whether or not the MRA will actually be necessary, as most of the relevant information therein is already contained in a Doppler ultrasound they ran last January (basically a blood vessel exploration). We're hoping it's not necessary, as it would require general anesthetic, and the less he has to go through that, the better.

The new coordinator also let us know that the transfer of Julian's "wait list time" acrued in Denver cannot be formally transfered until the evaluation is complete - which means all the tests listed above have to be finished before they'll transfer his time.

This is all a bit unnerving, as we've been under the impression that the evaluation was complete and the time had been transfered after our first visit her last January. Hopefully our efforts today and tomorrow will seal the deal, as it were, and we can move forward at last.

We're still waiting on official results of Cheryl's final test, and there's an outside chance that they'll want to run one or two others before she's cleared. So, she's biding her time, staying here in Palo Alto until we know for sure what's going on.

Finally, it looks like the May 12th date is not going to happen, as they've scheduled a live-donor liver transplant for that date. In the world of organ transplants, livers trump kidneys (just like I'm sure hearts trump livers, and so on), and because we're in a live-donor situation as well, we can be rescheduled. It's possible, however, that we may only be bumped a day or two, so it could still happen next week.

Our dialysis nurse overheard much of the goings-on this a.m. as we were meeting with the transplant coordinator right there in the dialysis unit. When we voiced our frustration afterward, she shook her head, indicating that this is nothing new. "In my experience, you don't really have a surgery date until they're rolling you into the operating room." Sigh.

Stacy's been great through all of this, and Julian has been a trooper. Of course, being 3+ years old, he has no idea that life as he knows it so far is in any way out of the ordinary. Nonetheless, he's been a true joy through all of it. Me, on the other hand: I like to know what's coming a hundred miles down the road (I love road maps!), so this whole experience is really stretching my capacities to be flexible and go with the flow. It's easy to forget that God is ultimately orchestrating the whole affair, and all he's asking us to do is be faithful and show up for our appointments.

Please continue to pray for - among other things - our overall health. We can't transplant if Julian is sick, and it gets very difficult to take care of him if either one of us is ill. Thanks.