Title: Annika's first words to me this morning.
It's strange to be so caught up in worry for your own child when so many people are dealing with tragedy on a grand scale. Sunday morning on the medical jet from Dallas to Chicago was the first opportunity I had had to catch up on the news, as Annika was involved in some lengthy conversation with one of her paramedics and so left me time to read the paper. Of course, I have not been watching the news in the hospital room with Annika right there and old enough to understand sorrow when she sees it. So I was pretty behind on events. Needless to say, I was shocked to read the accounts and shocked to learn that help had been so slow to reach those affected.
But it's strange. Looking at Annika strapped to a gurney with monitors attached and I.V.s flowing, I realized how lucky we were to have access to this top-notch medical care. But yet, I didn't really feel all that lucky. The feeling is almost something like guilt that, despite the much more desperate suffering of others so nearby, you still feel angry and frustrated and sad that this is happening.
And reading the accounts of parents who sent their children off, or left them at hospitals, hoping that they would be better off, really touched an emotional nerve. I am missing my Frankie dearly. The very idea that sending her away from her mom and dad is somehow better for her seems insane, but it is undeniably true. We are stressed here, and busy trying to entertain Annika, who is confined to her bed. Frankie would be seriously unhappy here, unable to run around and surrounded by tension and alarms beeping at all hours. I wonder what her little 22-month-old brain is making of this sudden turn of events.
Still, I know that I sent her off to be with family who love her very much and are giving her the best care and attention. I talk to her on the telephone at least once a day, and get regular reports. How much better than the parents who are now forced to stick their kids' pictures to bulletin boards, hoping to get word. But still I cried a little last night after Frankie told me on the telephone, "Night-night. I love you!"
Today we finally got to talk to Annika's regular doctors. They are going to do an endoscopy tomorrow, with probable plans to treat any bleeding varices that they find. We had still been hoping, in our own way of denial, that perhaps all the bleeding from her bottom had been a case of some massive hemorrhoids, but Dr. Alonso cocked her eyebrow a bit and said that it was most likely a gushing varix (swollen blood vessel) that was bleeding so quickly that it was passing immediately through her system before it had time to clot.
She told us that she is anticipating that Annika will be having a surgery called a Rex Shunt
. If you read through the article linked (which, by the way, is from the hospital where Annika is currently inpatient), you will discover that it has an amazingly high success rate. But
that success rate, you will note, is cited for children "with no other underlying causes for portal vein clotting." Unfortunately, Annika does not fall into that group. This surgery has been done on only two other children here after living donor liver transplants. The first child came through with flying colors. Problem solved. The Rex Shunt failed for the second child, the lovely and sweet Jayli, who then needed another transplant and subsequently died. Thus, the doctors have been putting off the Rex Shunt with Annika, despite knowing about her clotted portal vein. We have no idea how all this is going to turn out.
So, yeah, I've got circles under my eyes. And I'm trying very hard not to throw up. I need to be optimistic for Annika's sake, and there is a part of my brain that is shouting, "Hey! This could be it! The answer to all Annika's problems. Let them go ahead and do it, already!" But you can probably guess what the larger part of my brain is saying, and it only has to whisper for me to hear it.