Round and Round We Go

Where we'll stop, nobody knows. No really we have no idea where this ride is headed. Last week was a series of highs and lows in the world of liver disease.

On Tuesday, we had a clinic appointment with Jaisal's hepatologist. For the most part the appointment went really well. Jaisal continues to grow, despite his poor liver function, which is beyond awesome. She also was very surprised and pleased that Jaisal was walking. Yay for our little guy!! Then we set another clinic appointment for mid-December after which the doctor said that she'd be surprised if she didn't see us before then with another complication. Not the most uplifting way to end our appointment.

Then on Wednesday we got word from NMH that they were approving Kirk's friend to serve as a donor for Jaisal. We were elated! They cautioned, however, that Jaisal's surgeon had not looked at the films, and he was the final word on whether our friend was approved or not. The surgeon was out of the country until Thursday, but everyone reassured us that it would be extremely rare for Jaisal's surgeon to say no at this stage. We, of course, were not holding our breath, because if there is the possibility of a rare occurrence it's pretty much a guarantee that it will happen to us. After one of the CMH nurses promised she'd call us on Thursday with an update no matter what, we got a call after end of business on Friday that Jaisal's surgeon wanted another CT of our friend. ARGHHH! (Remind me to play the lottery and see if this freakish ability to have the rare happen also can be used to our advantage.)

So now here we are the week of Thanksgiving, our potential donor at home in Boston, trying to figure out logistically how we can get this CT scheduled ASAP. Today is going to be a series of phone calls to see if CMH and NMH will allow us to get the CT done at Mass General and trying to get that done before hospitals essentially close down for the holiday.

The liver ride continues with no clear end in sight, and I really really want to get off this ride or at least head over to that other ride called post-transplant.