We’re still waiting for the call and falling into a comfortable kind of routine which is mostly tolerable. I’m feeling motivated to do things that I took for granted before Ana got sick. Stuff like work and laundry. It had become unbelievably difficult to focus on these things for a while. First I was distracted by the holidays, and then it felt like all last week I was just waiting for that final shoe to drop. Of course it’s still poised to drop, but without the holidays to take up the last shred of my concentration, I’m pulling out of my funk.
A couple of people have asked me what’s next. What’s going to happen? I don’t have a lot of information beyond what the doctors have told us, but I will share that with you. Basically we’re waiting for an “offer” for a liver. That’s what they call it, an “offer.” The term is slightly unnerving to me and I said as much to Jim. It makes it sound somehow…commercial. But Jim pointed out that it isn’t THAT kind of offer. It is the kind of offer that you get when your house is flooded and everything you own is ruined. An offer of help. A lifeline.
So, we’ll get an offer – or, more likely, the surgeon will get the offer which means someone will have died and their liver will be a match for Ana. It will pass a bunch of screening tests and the surgeon will be alerted of the offer and (my guess) is that he’ll have the final say on whether it will be a match for Ana. I spoke with Dr. Kato about this a few weeks ago and he said that most people get the call to come to the hospital between 4 pm and 12 pm. So I guess that means someone has to die early in the day and then it takes that long to process everything and get the donor’s loved one’s consent.
Once we get the call, we put our action plan into place. As I’ve said before, all our bags are packed (including 3 days worth of clothes for Emily). We have a bunch of people on call who can take Emily so that Jim and I can both take Ana to the hospital and not have to drag Emily along with us in the middle of the night. One thing I haven’t looked into, and I really should, is a hotel near the hospital. It will be necessary (I think) for when Ana’s in the ICU.
So those are the nuts and bolts. I’m already scheduled to get screened as a living donor so that this waiting doesn’t drag on for too long. That’s happening in a couple of weeks and then maybe the plan will change. Maybe we’ll schedule the living transplant and get to actually plan something in what has been an entirely random series of events. Ana’s strong, but she’s also very scared and far more weary than an 11-year-old should be.
Tonight she told me that she wanted me to be her donor. She’d originally said she didn’t want that, but I think she’s just emotionally exhausted. She wants to get better. Then, about an hour after I put her to bed, she came downstairs and told me that if something happened in the operating room and the surgeon accidentally cut her heart, that she didn’t want me to give her my heart (it would probably be useless to her anyway because the moment she said that my heart broke). Jim and I said that the surgeon is superb and the hospital is one of the best in the world. That kind of accident is not going to happen.
I know she’s up there every night envisioning a million horrors, fearing the worst, fearing the hospital and the shots and the pain. I know this because she gets up three, four or five times every night and comes down with a new worry. So, no, this can’t go on indefinitely. What kind of test is this that we’re faced with? Why does she have to go through this? Sometimes I can’t quite grasp how unfair this is or how we’re supposed to keep it together day after day after day. But we just have to do it. We just do.