The Road Ahead
I can’t stop crying. I don’t know why it’s hitting me so hard today. Maybe because this is the first Thanksgiving since the girls were born that we’re not all buzzing around with barely contained anticipation. Even last year, when Emily was still recovering from her bone graft, life felt normal, and good and full of hope.
But now it’s there right in front of me and I can’t seem to shake the reality.
We spent the day at Morgan Stanley Children’s Hospital (which is part of Columbia Presbyterian) when most people were shopping for food, or preparing delicious meals, or getting stuff ready to pack in the car for an early ride in the morning to grandma’s house.
I tried to stay positive. I really did. We don’t even have to cook this year (not that I ever cook, but Jim isn’t making his famous rotisserie turkey or garlic mashed potatoes). We get a complete freebie – just bring a bottle of wine and ourselves so I should be relieved, but instead I just feel sad.
The majority of our day took place in a small exam room filled with the four of us plus various specialists on the liver team including a social worker, the pediatric hepatologist (Dr. Martinez) who I adore and a nutritionist. We also met an oncologist who may or may not see Ana. There were probably others. I can’t remember. Our day started at 5:30 a.m. when the alarm went off – and we got to the hospital at 9:15 or so, but we had to wait over an hour to be seen (our appointment wasn’t until 10 – they got us in at around 10:40.)
The team at Columbia seem really together. The team coordinator, Maria, even had some (but not all) of Ana’s information in the computer. They’re going to try to use as many of the tests that Ana already got at Westchester towards the transplant listing process. Dr. Kato will be meeting in a conference next week – hopefully Tuesday – where about 40 specialists with discuss her case and, at that point, she can be listed for transplant (well, hopefully – I think this is pending any tests she may need).
Dr. Martinez couldn’t really tell us how long the wait for a liver would be – for obvious (and gut-wrenching) reasons. She thinks possibly four to six weeks based on how high she will be on the list (again, there’s just no way to know). The hospitalization for transplant will be about ten days to three weeks, although this is just an estimate. She’ll be in the pediatric ICU (PICU) for the first couple of days and then she’ll be moved to the 4th floor for the rest of her stay. She will get a private room (we asked) because of the immunosuppressant drugs. We will be using a pharmacy that is associated with the hospital (not our old standby – the Walgreen’s in Kingston) so that her medications are all tracked and coordinated by the transplant team – which is kind of a relief because it’s sort of a mess the way they handle it at Westchester. The medication will be delivered right to our door. She may need the Lovenox shot for an additional 6 to 8 months after the surgery. This was just unbelievably discouraging news.
There are a lot of overwhelming transplant details to digest. We have a 20 page print out of how to manage food to avoid bacteria. No more salad bar for a while. I’m trying to grasp why my child has to go through this even as I’m realizing that there will never be a moment when I’m not worried about every germ, every possible sign of infection, every detail I can’t control – until she grows up. And even then – it will never end. Maybe this would’ve been more bearable if we could’ve stayed with Dr. Wu and Westchester, and the team that is familiar in the hospital we know so well. But today it’s hard to bear. I am lost, and filled with sorrow and so utterly afraid.