The Waiting Game

Sato rides on Shaina's wheelchair

After a couple of weeks in Dallas, Shaina was stable from an encephalopathy perspective, so I returned to New York to take care of a few things here (my fat, needy cat, for one). Of course as soon as I left town, Grandma’s COPD started flaring up and she’s been feeling quite ill.  Thankfully, Aunt Debbie was kind enough to fly out to Dallas to help with Grandma and Shaina and whatever else needed doing around the house. She has been a huge help and source of support for my mom; we're so very grateful that she took time out of her life to help the family through this difficult period. David is also in town this weekend visiting for Mother’s Day. I know that everyone, especially Shaina, enjoys having him around. (Maybe everyone except Sato. She loves him but he scares her. He has big hands.)

The infection that Shaina was fighting appeared to be gone last week, so her doctor stopped both of the strong antibiotics we were administering at home. After spending one blissful week untethered from the IV poll, another infection appeared. She has been receiving additional antibiotics at home since Wednesday.

The swelling of her broken foot has gone down, making her cast loose. Earlier this week her old cast was cut off and replaced with a tighter new one. Between casts, the orthopedic doctor took another x-ray of Shaina’s foot. The bad news is that it is still broken. The good news is that the bones are aligned, so the foot will likely continue to heal on its own. Hopefully she will have the cast removed for good in a few weeks.

Now we’re just playing the waiting game. Shaina is still going to visit her doctors at least once a week but at this point we’re in somewhat of a holding pattern, waiting for the right liver to come her way. Our goal as a family is to spend as much time together as possible while we wait. I plan to return to Dallas soon, once I get back from a wedding in Ohio.

While the entire transplant journey is incredibly difficult, you could make the argument that this indefinite waiting is the hardest part. We could have several relatively boring weeks before they find the right organ, or, like with her first transplant, I could get a call from my mom tonight telling me to jump a plane and be at the hospital in less than 12 hours. We just don’t know. Personally, I have a life in New York that I don’t want to miss out on. But when I’m here, 3/4ths of me is still in Dallas. I spend 4 or 5 hours a day on the phone with Shaina and Mom. It’s difficult to concentrate on anything else. It’s impossible to make plans for next week, let alone next month.

So we wait. Each day that we wait is another day that Shaina is here enjoying the beauty of life. My family’s top priority right now is just to be there for each other, enjoying each others company, love and support. Already on borrowed time, we don’t take one second with Shaina for granted.